View Full Version : A Matter of Life or Death (a real life journal)
Breeze
09-21-2016, 04:20 PM
If you aren't a reader of my Swim Like a Champion dynasty you probably missed my recent announcement...despite the fact I've been so healthy recently I haven't seen a doctor (except for physicals) in about 4 years, I'm only 47, and a non-smoker - about a month ago I was diagnosed with Stage IV Lung Cancer.
I've been debating constantly on if I should do this journal or not...I can't decide if it will be helpful to me or if it will depress me. Plus, I'm not sure how readers would react either...I know from all the "F" Cancer threads that many people on the board have been touched by this awful disease and I don't know how a first hand account will be viewed (if it is viewed at all). After doing some reading and seeing some other people's blogs that are in a similar situation I've decided to start this and see where it leads. If you aren't interesting in following because it is too depressing, cuts too close to a pre-existing wound, or are simply not entertained, I completely understand. This isn't about getting attention or sympathy. Honestly, I'm not sure if I was healthy if I'd stop to read something of this nature.
After basically a month I've decided to start writing this because my I'll kickoff my treatments tomorrow with a Gamma Knife procedure on the brain (I mentioned stage IV right?). Obviously, there is a long delay from diagnosis to treatment which is unusual, but I'll fill in the details shortly.
Breeze
09-21-2016, 04:24 PM
June 30, 2016
I go to see the doctor with a persistent dry cough. He diagnosis me with a "mechanical" cough, basically stating that the dry air combined with some irritations (pollen, dust, etc.) in the air caused me to cough, which irritated my throat and chest which in turn caused me to cough more. Basically it created a cycle that I was unable to break. He prescribed a steroid med-pack and antibiotic and things cleared up in about a week.
Breeze
09-21-2016, 04:36 PM
August 17, 2016
At this point I started developing the same "mechanical" cough I had about 45 days earlier. Only this time I also was also experiencing a little shortness of breath and some abdominal pain, especially on the left side right below the rib cage from my back around the side and to the middle of my rib cage on the front.
He listened to my lungs and again prescribed the exact same thing he had previously. Only this time he also wanted me to get an ultrasound on my liver (which incidentally is on the right, not the left, so not sure what he was thinking)
nilodor
09-21-2016, 06:09 PM
I
I've been debating constantly on if I should do this journal or not...I can't decide if it will be helpful to me or if it will depress me. Plus, I'm not sure how readers would react either...
Second point first, I think the crowd here will be pretty supportive of your journey, lots of thoughts and prayers.
To the first point. In an attempt to make a long story short, I'll offer two opinions. I've had 9 concussions. 6 years ago I had a serious of 4 in about 2 years that I still feel the effects of to this day. In an attempt to see a neurologist I had to fill out a headache diary. Through the process of completing the diary I found out that on 340 days of the year I experienced some kind of headache. I thought I was experiencing headaches maybe once or twice a week. I stopped filling out the diary because the weight of the numbers became depressing. I think that was the right decision.
To the other side, when I went to see my GP after a minor setback he asked me if I told anyone, I said that I had, reluctantly. He said that it's important to reach out because it's a positive sign that I hadn't resigned myself to a certain future.
What I'm getting at is share what you need to, when you need to.
Good luck.
Breeze
09-21-2016, 08:30 PM
Second point first, I think the crowd here will be pretty supportive of your journey, lots of thoughts and prayers.
To the first point. In an attempt to make a long story short, I'll offer two opinions. I've had 9 concussions. 6 years ago I had a serious of 4 in about 2 years that I still feel the effects of to this day. In an attempt to see a neurologist I had to fill out a headache diary. Through the process of completing the diary I found out that on 340 days of the year I experienced some kind of headache. I thought I was experiencing headaches maybe once or twice a week. I stopped filling out the diary because the weight of the numbers became depressing. I think that was the right decision.
To the other side, when I went to see my GP after a minor setback he asked me if I told anyone, I said that I had, reluctantly. He said that it's important to reach out because it's a positive sign that I hadn't resigned myself to a certain future.
What I'm getting at is share what you need to, when you need to.
Good luck.
Thanks nilodor, we'll see how it goes...
Breeze
09-21-2016, 08:44 PM
August 24, 2016
This was the date my ultrasound was scheduled...during the week following my doctor visit my shortness of breath got much worse. To the point I was wheezing, and I had to slow my pace when walking...in fact, I actually had to stop occasionally to catch my breath.
During the ultrasound, the tech asked where I was hurting, I said the left side under the rib cage so thankfully, she ignored the doctor's order to monitor the liver only. During her scan she saw fluid in the lung (she may have actually seen a mass but wouldn't tell me). She immediately sent me back to my primary doctor to get a chest x-ray. Which I did...
The x-ray showed the entire left lung as white (basically indicating it had collapsed). At this point I was sent straight to the emergency room.
I'm not going to go into the gory details, but I was pretty quickly admitted, and my lung was drained of fluid. There was so much fluid in the lung that it completely filled two of their containers in a matter of minutes. The third basically filled over the next 2 days. The insertion of the tube was uneventful as I was drugged for it. The worst part was the coughing that re inflated the lung after the initial draining. That was over 1 hour of violent constant coughing. After the coughing spell finished, I basically slept the rest of the time.
PilotMan
09-21-2016, 10:15 PM
Breeze, I'm so sorry to hear this. I support your journal for sure. That's some brutal news to digest. I feel for you and your entire family. It's simply not fair.
Breeze
09-23-2016, 06:35 AM
Breeze, I'm so sorry to hear this. I support your journal for sure. That's some brutal news to digest. I feel for you and your entire family. It's simply not fair.
Thanks PM....
Breeze
09-23-2016, 06:36 AM
August 25, 2016
Most of the day was spent draining the lung. Some tests were run, but nothing definitive was determined...
Breeze
09-23-2016, 06:43 AM
August 26, 2016
The Doctor entered my room early in the morning and announced, "The testing on the fluid from the lung came back and the markers tested positive for lung cancer."
When I was told this, I immediately went numb. The doctor left the wife and I alone to digest this news. Almost immediately I began to think of my kids, how I wanted to see them grow up, how I needed to be there for them, how much I'd miss them and my wife. I cried, A LOT...
Following this, I had to have a PET scan and an MRI to determine if the cancer had spread beyond the lung.
The good news for the day, by the afternoon the lung had stopped draining, and I was allowed to go home.
Breeze
09-23-2016, 07:04 AM
~September 2, 2016
Went to see my oncologist Dr. Reddy to get details on what was found during all the testing. When I went in, he informed me that I have non-small cell cancer and it is mostly pleural effusion in nature (lung lining). This type of cancer is much more common in non-smokers. In addition, he stated he felt I probably had a mutation cancer, but that additional tests had to be run to determine that. HE went on to tell me that there was a spot on my brain about the size of a period on a piece of paper that would need to be taken care of. In addition, there were three tiny spots in my abdomen as well. The fact that the cancer is now dispersed through the body makes this advanced (stage IV).
There were a million questions from me, obviously:
- how did this happen I've been so healthy
- should I have recognized a symptom so it could have been caught quicker
- what are my treatment options
- what is likely to kill me
- and numerous other questions I can't even recall at this point.
He asked me some questions about my background and work history to see if I could have been exposed to something that might have triggered this, but there were no obvious indicators so basically, he has no idea why might have caused the cancer.
He told me that there probably weren't any indicators for me to noticed and that based on the spread of the cancer I've probably had it for a couple of years even though I felt healthy. He added that if my cancer is a mutation that it is very common for it to strike younger people and it often is caught until it is already stage IV.
Treatment will depend on the results of the mutation test. If I have a mutation there are drugs that will specifically attack just mutated cells, thus the side effects aren't as great. If not, I'll go into standard chemo.
What is likely to kill me, oddly enough it is the period size brain lesion. The one I currently have can be handled extremely easily, but unfortunately once cancer gets into the central nervous system (CNS), it tends to continue to pop up new and more spots, until it reaches a point that pinpoint radiation is no longer an option.
You will notice one item I did not ask was, "How long have I got?" That is a question, that I will not ask. He did volunteer that with my age and health he expects to have me around for quite a while. I don't know odds, or best/worst case scenarios, and I've avoided blogs, reports, writings that include that information. So if you decide to read and follow along with my journey, and you research this aspect of the disease yourself, PLEASE DON'T POST IT HERE - it is easy enough to go to the dark places without that albatross around my neck.
Because I have the lesion on the brain, I had to make an appointment with the radiological oncologist and a neurologist. Plus I had to schedule a follow up with the oncologist to go over the pathology report (determine if the cancer is a mutation or not).
Breeze
09-23-2016, 07:41 AM
~September 6, 2016
I meet with the radiological oncologist to go over the treatment for the lesion in the brain. Where he informed me that the MRI showed not 1 but 3 spots (again my heart sank into my stomach at this news). He said all 3 were small and could be easily taken care of. In fact, he said they would use the Gamma Knife to attack just those spots leaving the rest of the brain untouched. Then he went on to tell me how it would work.
At a very very high level, what they do is get another MRI, only this time I wear a brace around my head that they can use to map the specific spots. In order to keep the brace in place it is SCREWED TO MY SKULL! Also, when I go into MRI and Radiation, the brace is also screwed to the table to prevent me from moving.
I still needed to meet with the neurologist before I could schedule this procedure and that was not going to happen until the 13th.
Breeze
09-23-2016, 07:52 AM
September 9, 2016
The follow up with my main oncologist, Dr. Reddy. This time the pathology was back and I learned that I have and ALK Mutation. ALK Mutations occur in about %4 of all lung cancer patients. It is much more common in young non-smokers and it is more common in Asia (I've never even been to Asia...but ok).
This is good and bad news:
The good news is there are 2 ALK inhibitors that are approved and available for treatment (I believe there is a 3rd that is currently in a clinical trail). So I'll will be on one of these drugs which will limit the impact of the side effects.
The bad news - This can't be cured - There is never a full remission. Life now becomes a effort at maintenance. Taking my drugs on a daily bases and constant monitoring for effectiveness. Similar to someone with heart disease or blood pressure issues.
Also at some point the ALK targeted medication will cease to work, either because it just becomes ineffective, or because the cells mutate again.
Dr. Reddy also informed me that Emory has a clinical trail going on that I might be a candidate for and he urged me to go see Dr. Ramalingam (one of the top lung cancer doctors in the world). So I scheduled an appointment for the 13th.
Breeze
09-23-2016, 08:28 AM
September 13, 2016
I wake up, go to see Dr. MacDonald (the neurologist) only to realize I'm at the wrong office. During this morning he's in an office about half an hour away. So my stress goes way up...I try to call and let them know but they failed to switch off of after hours answering service. I got to the other office about 40 minutes late but they still took me.
When the dr. came in, I apologized for screwing up his schedule...he said not to worry about it.
After the obligatory questions of smoking, general health, etc...he brought up my brain scans to show me the spots in question. Initially, he only showed one...then he found one of the other two the radio-oncologist mentioned. Both we very tiny in basically the same location, front third, top outer edge, on opposite sides of the brain. The 3rd spot he said he didn't believe to be a lesion, but rather some vessels that have lived through 47 years of athletic life, and they don't need to treated.
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Later that same day, I went down to Emory for my meeting with Dr. Ramalingam (Dr. R). After a LONG wait. I was finally taken back. A pulmonologist that works in conjunction with Dr. R. did a pretty thorough exam, which I apparently passed, because she said that I "even now" seem to be in great shape.
Dr. R, came in and after his brief follow up questions, he started in on the clinical trial. Basically, with this trial I would be placed on the 1st ALK approved drug (which would probably have been my method of treatment anyway), but the difference here is I would also be placed on an immunotherapy drug (PB1). There two have never been used together before. The hope is the ALK targeted drug will impact the growth and spread of the disease, while the immunotherapy drug will rev up the immune system to recognize and attack the cancer cells.
After discussion with Dr. Reddy, as well as input from several other oncologists, I have decided to enter the trail. All have reported basically what I felt - there really is no drawback to this trial. Yes, by having 2 meds, my side effects will be greater, but the results could be better or better yet - could last longer.
Now I have to get the gamma knife done, then have a 2 week wash out period for the radiation to leave my system before I can start my treatments.
Breeze
09-23-2016, 10:29 AM
September 20, 2016
Follow up with the pulmonologist. X-rays of the lungs show no new fluid build up. He was extremely pleased by this, especially given that I haven't started any treatment yet. In fact, he said as long as I don't start getting shortness of breath that he doesn't need to see me again.
Breeze
09-23-2016, 11:00 AM
September 22, 2016
Gamma Knife day...The key to this day is to not only take care my two small spots, but given it has been about a month since the two we know about were found, to not have any new ones show up.
I get up at 4:30 A.M., get dressed and head to the radiologist. As I wait for the door to open I meet a guy who had Hodkins Lymphoma at 18, which he beat, then he got testicular cancer 6 years later which he beat, then about 6 years after that, he went to the doctor not feeling well, and found out he was eaten up with cancer all through his torso. He obviously had something in his brain as well because he was going for his 3rd Gamma Knife treatment.
He had such a great attitude and he knew all the nurses. I also found out when they assigned him to his room, that it was his anniversary, and the staff at the center had decorated his room for he and his wife
Upon arrival I was weighed (183 - which is down due to my changes in diet...I'll cover that more once I'm caught up on the timeline). Then I entered my room,, stripped down and put on the ridiculous gown and pants they provided. Then answered a million questions, had to repeat my name and date of birth over and over.
Finally an IV went in, and pretty quickly afterwards the joy juice. Then the neurologist and radiologist came in to attach the bracket to my head (while the nurse monitored my vital signs). They start by placing a couple of cushioned pins in your ears. Then line up the device to determine how it will fit. From here, the neurologist injected local anesthesia into two places on my forehead and two places in the back of my skull. Next the screwing started...It was pretty uneventful...some stinging in the back so more local anesthesia was added, and some real pressure in the front right (because the pin got close to the top of the eye socket). But once it was in I was fine.
Next step, MRI. So I was wheeled to MRI, where additional pieces to the head gear were added. It was odd, when the extra weight of the additional pieces were placed on the headgear, my teeth hurt. I'm sure was related to the fact my jaw was the only part of my skull that could still move freely and the weight seemed to settle there. Then I was given ear plugs for the MRI...which was a nice gesture but totally ineffective. Putting ear plugs in my ear, when I have 4 metal screws drilled into my skull and I'm going into a large magnet probably isn't going to help. The entire time I'm in the MRI (about 45 minutes), I'm praying, please don't let there be any new spots...over and over.
After the scans are reviewed by a team of 5 people (the two doctors already mentioned, 2 physicists, and the RN), I'm told that "there is nothing new...so this should only take about 30 minutes. The nurse came in and told me this his HUGE...that almost invariably a person comes in with two or three but after the MRI the day of the procedure, the total usually climbs to 8 or 9.
From here, I'm wheeled into the radiology room. The additional pieces of the headgear are added again (with the same strange sensation to the teeth). I'm rolled into the gamma ray tube similar to an MRI...and I - Fall asleep. You don't feel anything or hear anything, so I just collapsed and let the stress of the morning roll off of me.
After the treatment, they monitored me for about half an hour, then unscrewed the headgear, treated the holes with antiseptic and bandages and sent me home (where I crashed for several more hours).
Breeze
09-26-2016, 08:48 AM
September 26, 2016
Back at work today. The screw holes are still tender and I've had this odd discomfort around my skull, but no real pain, and all and all the procedure ended up being uneventful.
We will see how my stamina holds up, as I have fatigued quite a bit late in the day over the weekend.
CraigSca
09-26-2016, 09:45 AM
Thoughts and prayers with you and your family. Rooting for you from Florida. I hope journaling like this is therapeutic for you.
Breeze
09-26-2016, 10:54 AM
Thoughts and prayers with you and your family. Rooting for you from Florida. I hope journaling like this is therapeutic for you.
Thanks Craig...
digamma
09-26-2016, 11:10 AM
All my best. Will be reading.
Breeze
09-26-2016, 12:52 PM
All my best. Will be reading.
Thanks Digamma...I appreciate all the support.
MacroGuru
09-26-2016, 01:28 PM
Thoughts, PRayers, virtual hugs and I will be reading..
Breeze
09-28-2016, 07:44 AM
Thoughts, PRayers, virtual hugs and I will be reading..
Thanks MG...
Breeze
09-28-2016, 07:49 AM
September 28, 2016
Today is the day I start the screening process and sign the paperwork to join the clinical trial. I'll probably be poked, prodded, and scanned 6 ways to Sunday. The hope today is two fold.
1. Have all the tests come back within normal ranges so there is no item that would exclude me from the trial.
2. DON'T HAVE ANY NEW SIGNS OF CANCER SHOW UP, ESPECIALLY IN ANY NEW PLACES.
CraigSca
09-28-2016, 02:25 PM
Will you hear back today?
Breeze
09-29-2016, 09:59 AM
September 29, 2016
So I finished with the screening yesterday and it went better than I expected. I was thinking that because of all the tests (waiting) and traffic that it might be close to 7 before I got home, but as it turned out I was home at 5:15.
The day started with me signing up for the clinical trial, agreeing to allow them to take blood or tissue whenever they deemed necessary. As well as agreeing to not have any more children (which was odd, but the organizer said it was a requirement and that she has to get 80 year olds to sign it as well). From there it was a quick vitals check, which worked out fine:
Weight: 186 (fully dressed)
BP: 108/68
Pulse: 82
Oxygen: 96
Temp: 97.7
Then on to labs, where I had to provide a urine sample (which wouldn't have been a problem if I hadn't gone to the bathroom right before walking into the clinic). Plus blood taken - 7 full vials worth. When I saw how much they were going to take, I asked if I'd get some apple juice or a cookie after donating blood.
After labs I went to get an EKG...which would have been easy enough if I wasn't sent to the wrong location........TWICE! So initially the nurse told me to go to Clinic A, so I found the clinic in building A, which was the only thing that seemed to fit. They informed me I was in the wrong place and directed me to the testing center. I found that, logged in, and after about a 20 minute wait, was again told I was in the wrong place. I was sent this time to the regular cardiology department, which was correct. After a short wait, I was called back, where a new tech was being trained on how to do EKGs, and it took about 5 times as long to get me patched and hooked up as it did to actually run the test. The heart rhythm apparently looked good because the tech made a comment about it while it was printing.
Then off to radiology for the CT Scan. I was called back, tapped for an IV so the contrast could be added quickly, then moved to a "behind the curtain" waiting room. During my move into that waiting room, and older lady was getting into a wheelchair to be rolled out. We exchanged some funny comments and teasing then before they wheeled her off, she took my hand and prayed for me. It was a bit overwhelming...
I was taken in for the CT Scan after a short wait. They did a couple of scans before adding the dye. Then repeated the process with the dye. The tech confirmed all my organs were present and accounted for.
While I'm now finished with the screening, I (to answer Craig's question above) don't know any details and probably won't for several more days. Fingers are crossed and saying my prayers that I won't be disqualified and they won't find anything new.
CraigSca
09-29-2016, 11:05 AM
September 29, 2016
Fingers are crossed and saying my prayers that I won't be disqualified and they won't find anything new.
On it!
Breeze
09-29-2016, 05:25 PM
September 29, 2016 (part 2)
About 24 hours after my ct scan, I have broken out in a major rash. It is apparently an allergic reaction to the contrast. Thankfully I only have a rash, no problems breathing or swallowing. Right now the doctor has me taking 50mg of Benadryl every 4 to 6 hours.
Man this itches...
BYU 14
09-29-2016, 09:06 PM
First off, praying hard for you and sending all the positive vibes one can muster. Will be following your journey and rooting you on. All the best to you and your family!!
Breeze
10-03-2016, 08:42 AM
First off, praying hard for you and sending all the positive vibes one can muster. Will be following your journey and rooting you on. All the best to you and your family!!
Thanks BYU...
Breeze
10-03-2016, 08:46 AM
October 3, 2016
On Friday (Sept 30) my rash was no better, so I called in to let the Emory doctors know. After some run around including this brilliant statement by one the coordinators "You really need to let us know you are allergic to contrast before we give it to you." Really...like I knew I was going to have this type of reaction and just forgot... I was able to get a prescription for steroids. It took several days, but finally today, I starting to see the rash clear and getting some relief from the itching.
I'm still waiting to hear when I go down to Emory to start taking my Xalkori (that's the ALK inhibitor).
Following this, wish you the best, really admiring how strong you are.
I have a friend with lungs cancer too, in his case is mainly because smoking. So far after 2 years, surgery and some chemical phases he looks clean and optimistic, so you never know.
Breeze
10-04-2016, 10:50 AM
Following this, wish you the best, really admiring how strong you are.
I have a friend with lungs cancer too, in his case is mainly because smoking. So far after 2 years, surgery and some chemical phases he looks clean and optimistic, so you never know.
Thanks Icy...working on staying upbeat. Figure there is no point in being depressed, it won't accomplish anything.
Breeze
10-06-2016, 08:36 AM
October 6, 2016
My two week radiation wash out period is now over. Unfortunately, I don't know anything more about when my treatment is supposed to start. When I was at Emory for my screening process, I requested getting my day set up, but was told that they needed to work through Monique (my onboarding coordinator), and she was currently unavailable. They were going to reach out to her to get that set up though. I asked again on Friday when I was talking with the receptionist about my rash, and I followed up again yesterday and was told they were working on it at that minute. Of course, I still haven't been contacted. It's really quite frustrating, and honestly I expected more from Emory.
On a personal note (which I figure I should share otherwise this becomes more of a log of doctor's visits), a couple of days ago I had probably my first real overwhelming emotional moment while I was at work. I was listening to music on Spotify and St. Judy's Comet (https://www.youtube.com/watch?v=kTxCqbfreTA) came on. That's the song that I sang to my boys when they were babies and I was putting them to bed. I hadn't heard the song in years and it brought back so many memories and emotions for my current situation that I was overwhelmed. I really struggled for quite some time to get myself back together. I was close to just heading home it was so impactful. Honestly, just writing about the experience is difficult...
Hopefully, I'll hear from Emory today - If I do, I'll update the thread.
Subby
10-06-2016, 10:21 AM
Nothing of value to add but I just wanted to comment and let you know that your words are extremely powerful. Thank you for sharing and I hope it helps you in some small way as you fight this battle.
Kodos
10-06-2016, 12:25 PM
I'm here and hoping for the best for you, Breeze.
hoopsguy
10-06-2016, 10:25 PM
Also reading along and pulling for you. No idea how I would react in this situation, but my guess is not as well as what you have described.
How old are your boys?
Breeze
10-07-2016, 07:56 AM
Also reading along and pulling for you. No idea how I would react in this situation, but my guess is not as well as what you have described.
How old are your boys?
Hey hoopsguy,
The boys are 16 and 14. I also have a 14 year old daughter, but I didn't sing St. Judy's Comet to her (if you listen to the song you'll know why :) ). I'm hoping the Xalkori (and potentially the second phase ALK Inhibitor drug) keeps me around for a while so they can start there own life. One of the hardest things to deal with is the thought of leaving them without a father while they move through high school and into college.
Thanks for the well wishes and for reading along.
Breeze
10-07-2016, 07:56 AM
I'm here and hoping for the best for you, Breeze.
Hey Kodos, thank you...
BYU 14
10-07-2016, 08:07 AM
Hoping you get word back from Emory ASAP. I would have to think the constant waiting for results, direction, etc. has to wear on you the most. I have a lot of admiration for the strength you have shown in this thread.
Breeze
10-07-2016, 10:29 AM
October 7, 2016
Still no word on a time for my visit (though it does look like it will be on Tuesday). However, I did just follow up with my coordinator to remind her that I have to request time off for this visit and I need to let the company know when I'll be out as soon as possible. She responded with the following:
"Eligibility was just confirmed by the sponsor yesterday and a request for your schedule was made the same day. Will let you know as soon as something is posted."
So, apparently the biggest delay was the sponsor reviewing my application to be in the clinical trial. And, looking at the positive, it looks like I've been approved...
Breeze
10-10-2016, 10:14 AM
October 10, 2016
Finally have my appointment scheduled. I'll go in to start treatment on Wednesday at 10 A.M.
CraigSca
10-10-2016, 03:15 PM
Good. Wishing you the best with this new therapy.
Breeze
10-12-2016, 04:05 AM
October 12, 2016
Today is the first day of what will be my new life. I am going to start my treatments which hopefully will run for a long time. Here are my hopes:
- The Xalkori is effective for me. It is for around 80 to 85% of ALK patients.
- The Xalkori is effective for a long time. The longest my doctor has seen is 4 years (I'd take that in a heartbeat, but half that long would still be good)
- The Xalkori doesn't have significant side effects
- That my liver handles the metabolism of the drug well
- That I'm capable of taking the Xalkori (no reactions)
I think that pretty much covers it. This is a crucial day for me. If I struggle or have a reaction to the drug then the benefits of targeted treatment will be lost and I'll probably end up in standard chemotherapy, which will shorten my life expectancy significantly.
Northwood_DK
10-12-2016, 06:49 AM
Also reading and pulling for you.
Hope you get the answers you want today.
heybrad
10-12-2016, 10:53 AM
You're in my prayers Breeze. Stay strong.
BYU 14
10-12-2016, 12:42 PM
Praying for the desired outcome
Cap Ologist
10-12-2016, 12:48 PM
Praying for you!
Breeze
10-13-2016, 10:09 AM
October 13, 2016
Yesterday was a long day...had to head down to Emory after dropping the kids off at school because with traffic 10 A.M. across town is a difficult thing to judge. We ended up at Emory about 40 minutes early, but we checked in and were quickly taken into the Phase 1 treatment center, which will be my treatment location for everything (sans scans) moving forward.
Everything started as it always does with a check on my vitals:
Blood Pressure - 133/92 (ok this was extremely high, but I put it down to stress and having to drive for 1.5 hours in Atlanta traffic)
Weight - 186
Oxygen - not checked
Pulse - not checked
Next, blood was drawn for labs and sent off to be examined. In fact, we had to wait for them to be returned before we could proceed. They came back clean, so I was then given an EKG, which also checked out fine. Then the pills were delivered, and I took my first one. I did find out that I am on the strongest does they offer - 2 x 250mg. Apparently they offer 2 x 200 mg and 1 x 250 as options. I'm guessing I'll continue on my 2 x 250 as long as my body can deal with it.
About 30 minutes after taking the pill 2 things happened. First, I had a slight twinge of pain in my right ear/jaw/neck, which quickly went away. Second, I had...how to describe this...it wasn't a feeling of euphoria, it wasn't that strong, but there was definitely a bit of a buzz. Initially, I thought it was caused by the pill, but after some reflection and not experiencing the same thing after taking 2 more I believe it was actually caused by 2 things:
1. A stress relief - having gone almost 2 months from diagnosis to treatment, I was probably more stressed than I realized and by taking a pill I knew I was finally doing something about it so my stress dropped
2. Adrenaline - Having taken a pill of that strength and knowing how important it was for me moving forward, being concerned about the side effects, and similar concerns and thoughts, I believe I had a bit of an adrenaline rush.
A second EKG was done 2 hours after taking the pill, then I was released. Also had a second set of vitals taken this time my blood pressure was 118/82...
For the most part things have been good. I won't get into what has happened, I don't want to disgust anyone, but even it wasn't terrible. I am at work today, but I came in late not wanting to be trapped in the car in traffic for an extended period of time. Thankfully, the owner of the company was accommodating. I'll probably need to continue that practice for a while until I have a better understanding of what my new normal is.
One other note, the jaw pain returned last night which I thought was odd. I can also tell it is still there a bit today as well (though I can easily ignore it). I'm just not sure if this is related to the pill or just a coincidence (this is part of that not knowing what is normal anymore).
Hopefully, things continue to go well. Thanks for all the well wishes guys. They are appreciated more than you know.
Kodos
10-13-2016, 02:31 PM
Here's hoping your body reacts well to the Xalkori, Breeze.
BYU 14
10-13-2016, 06:09 PM
So awesome to hear the positive news, sending vibes things stay on this track for you!
JonInMiddleGA
10-13-2016, 06:41 PM
I'm a bit behind on things, so I'll just say my two cents briefly:
1) You may or may not recall but my wife is a lung cancer survivor, so the surreal nature of hearing the diagnosis rang several bells for me. And there really aren't any just right words I've found.
2) echoing the "journal as you feel, or don't" comments from early on. My wife still marks growing weary of talking or thinking about it as one of the biggest struggles in her situation. If that fatigue hits, do what's best for you.
3) Some recent dealings with Emory (for a third party) did kind of suggest to me that their admin stuff is a little off its game lately, compared to our experiences more than a decade ago at least. And I'm the King of letting fly about that sort of thing.
That said, even with that (and it can be legit maddening) I don't know of anywhere I'd rather be, rather have a family member be, or rather you be. Really unlike any other health care experience I've ever had, there's not just top notch doctors but some downright top notch human beings that seem to have a knack for being in the right place at the right time to let that trait come through.
Thoughts and prayers with you and your family.
Breeze
10-17-2016, 10:43 AM
I'm a bit behind on things, so I'll just say my two cents briefly:
1) You may or may not recall but my wife is a lung cancer survivor, so the surreal nature of hearing the diagnosis rang several bells for me. And there really aren't any just right words I've found.
2) echoing the "journal as you feel, or don't" comments from early on. My wife still marks growing weary of talking or thinking about it as one of the biggest struggles in her situation. If that fatigue hits, do what's best for you.
3) Some recent dealings with Emory (for a third party) did kind of suggest to me that their admin stuff is a little off its game lately, compared to our experiences more than a decade ago at least. And I'm the King of letting fly about that sort of thing.
That said, even with that (and it can be legit maddening) I don't know of anywhere I'd rather be, rather have a family member be, or rather you be. Really unlike any other health care experience I've ever had, there's not just top notch doctors but some downright top notch human beings that seem to have a knack for being in the right place at the right time to let that trait come through.
Thoughts and prayers with you and your family.
Thanks John...
Breeze
10-17-2016, 10:47 AM
October 17, 2016
This weekend marked the first time nausea set in, and I had my first vision related side effects as well. Thankfully, the nausea wasn't severe and the medication I have to counteract it worked well. As for the vision issues, they are basically peripheral vision based and it reacts to light/shade and movement. I end up seeing a trails due to movement and flashes due to changes in light & shade.
Interestingly, the vision issues cropped up every time I woke up, Saturday morning, Saturday nap, and Sunday. Also was present again this morning. So far this side effect clears up pretty quickly, so it hasn't been to impactful for me. It is also something that is supposed to clear up and not return after the first month or so.
Breeze
10-25-2016, 09:48 AM
October 25, 2016
Tomorrow I have what I will affectionately refer to as my first vampire treatment. I go into the clinic at 7:30, where they will tap my vein and take blood. Then I'll take my pill and wait around for an hour. At which point they will take my blood again. An hour later they will again take my blood...and an hour later - you get the idea. This will continue for 8 hours. The constant blood monitoring is designed to see how much the drug is impacting my system. Obviously, I need the blood tests to indicate my system is tolerating the impact of the drug.
As far as how things are going. This morning I was about this close || to getting sick (which would have been a first, though it was the second time that I came close). I have had some other side effects to deal with, but nothing that was debilitating.
CraigSca
10-25-2016, 03:44 PM
How are the vision issues?
Was going to ask yesterday how you were doing, but as Jim said, keep updating when you feel up to it.
Do they HAVE to take your blood for 8 hours, or is there an opportunity to get out before if the results are to their liking?
Breeze
10-25-2016, 03:51 PM
How are the vision issues?
Was going to ask yesterday how you were doing, but as Jim said, keep updating when you feel up to it.
Do they HAVE to take your blood for 8 hours, or is there an opportunity to get out before if the results are to their liking?
Hey Craig,
The vision issues are still present and they still just show up when I first wake up. I think it is a combination of still being tired and in the mornings I don't turn on all the lights right away which creates more light/shadow transitions. Thankfully, it isn't really a problem.
As for the blood taking...given that this is a clinical trial, my guess is the requirement of taking blood for 8 hours is written into the study, so my bet is yeah, I'll have to sit there through the whole thing. The interesting thing will be seeing how much they draw each time. If they draw 5 vials (which is what they did last time), 9 times (every hour plus the first prior to taking the drug), then I'm betting I'll end up about a pint short when it is all said and done.
Thanks for checking in, and feel free to ask questions, if I'm not up to answering, I won't be on the site to read your inquiry anyway.
CraigSca
10-25-2016, 08:04 PM
As for the blood taking...given that this is a clinical trial, my guess is the requirement of taking blood for 8 hours in written into the requirements, so my bet is yeah, I'll have to sit there through the whole thing. The interesting thing will be seeing how much they draw each time. If they draw 5 vials (which is what they did last time), 9 times (every hour plus the first prior to taking the drug), then I'm betting I'll end up about a pint short when it is all said and done.
Yeah, "being part of the requirements for the trial" makes a lot of sense, but good Lord, let's hope it's not that much! Even a single vial x 9 seems like an awful lot. Do you have a ride home?
Breeze
10-27-2016, 08:40 AM
Yeah, "being part of the requirements for the trial" makes a lot of sense, but good Lord, let's hope it's not that much! Even a single vial x 9 seems like an awful lot. Do you have a ride home?
Hey Craig,
Sorry, after I initially responded I signed out and didn't jump back in until late last night. Typically, when I go to Emory, the wife goes with me in case I don't feel up to driving home. This time, because it was going to be all day, and pretty much just blood pulling the wife went to work and the parents went with me. They took the opportunity to check out the area, eat a couple of good meals and learn the facility (look for shortcuts - which is my dad's favorite past time).
Breeze
10-27-2016, 08:58 AM
October 27, 2016
So the day started early. I needed to be at Emory at 7:30, which is about 45 miles away, and with Atlanta traffic that is easier said than done. Not wanting to risk it, we left really early and we got down to the facility about 6:15. To waste time we drove around looking for places to eat and back entrances into the facility.
Once they finally opened, the day went pretty much as expected. It started with the nurse pulling blood for my baseline labs. Which were checked before we proceeded. The labs came back fine, the doctor stated that I do have a VERY slightly elevated level in one of my liver enzymes, which is to be expected. It isn't currently high enough to be a problem, and they will continue to monitor it.
Vitals were checked:
Weight - 191 - I expected this to be higher than it has been because I've had to eat a good bit of carbs recently to combat the nausea from the medication. Also, I really pushed water intake in order to make the blood draws quicker, so I expect some of that weight is actually just water.
Blood Pressure - 123/81 - a little higher than I would like. They only took it once so not sure if it is anxiety over the day, or if the medication I'm on is increasing my blood pressure.
From there I took my pill at 8:15 and then the clock started. Blood was pulled again at 9:15, 10:15, 12:15, 2:15, and 4:15. A lot less often than I was originally led to believe. Plus, the 2 hour window later in the day, allowed me to leave and go and get a good lunch. I don't know anything about the additional blood pulls, in fact, I got the impression that they weren't even checked at Emory (could be wrong), but it seemed to me they were going to be shipped off to the facility where the study is homed.
The day was tiring, but all in all I only got stuck 1 time - so really can't complain.
CraigSca
10-27-2016, 08:04 PM
Glad you're back. Any idea when you'll hear the results? Glad to see you're keeping your appetite up - that's very important.
Breeze
10-28-2016, 08:06 AM
Glad you're back. Any idea when you'll hear the results? Glad to see you're keeping your appetite up - that's very important.
Other than a basic, "your blood work looks ----------------", I'm not sure I'll get much more. If I do I'll post it here...
Breeze
10-28-2016, 08:40 AM
October 28, 2016
I posted this in the Swim Like a Champion dynasty because it applies there as well, but figured I'd post it here for anyone that doesn't read that thread.
Earlier this week we signed all 3 kids up for the high school team, at $350/kid. That adds up really fast even before you have serious medical bills to deal with. We juggled around some money and bills and found the $1050 needed.
Today (10/28), we just got a call from the team treasurer (who is a CRC Summer League team parent). She told us that she explained our situation to the coach and they are going to refund us $350. They said they wanted to do something to help out and they had enough money to more than cover expenses. They also said we are the only family to have 3 kids on the team so they felt that the cost was pretty high when you have to pay for 3 at 1 time.
I'm completely blown away by this. I'd love to put into words how this feels, but the range of emotions is so broad I'm not sure it's possible. Obviously, there is gratitude, but it goes so much farther. I'm honored that they care enough to do this, but there is also a bit of, if not guilt or a feeling of being unworthy, something close to it. I've never been one to ask for help and it feels odd to have people just give it without solicitation.
In other news...my immunotherapy infusion will be Wednesday 11/2.
Breeze
10-31-2016, 12:04 PM
October 31, 2016
Last night was the first time my migraine symptoms cropped up since I was diagnosed with cancer. Given I have to go for my infusion on Wednesday, and I really don't want my blood work to come back out of whack, I didn't want to take any additional substances to combat the pain. I tried heat and ice, but it didn't help much. Finally, about 1:30 I gave up and took a couple of Advil (still stayed away from my prescription medicine). I probably got to sleep around 2:30. Of course, today is an early morning practice for the kids so I was up again at 4:30 getting them ready to swim.
I need a nap... :)
JonInMiddleGA
10-31-2016, 12:55 PM
I'm completely blown away by this. I'd love to put into words how this feels, but the range of emotions is so broad I'm not sure it's possible. Obviously, there is gratitude, but it goes so much farther. I'm honored that they care enough to do this, but there is also a bit of, if not guilt or a feeling of being unworthy, something close to it. I've never been one to ask for help and it feels odd to have people just give it without solicitation.
It's a very nice (understatement) gesture on their part but do try to go lightly on yourself about the unworthy/guilt/whateveritis aspect of it.
You're obviously not entirely a stranger to them (best I can tell from the swim stuff) so there IS a certain amount of ... I'll say "earned equity" for lack of a better phrase. You're up at 430a today for cryin' out loud, some graciousness on their part isn't entirely unwarranted here ;) You're still doing the right thing(s) in a tough situation, and my sense is that you'd have been on board with similar if situations were reversed.
So, yeah, don't let too much of that particular thinking linger too long, m'kay.
Breeze
11-01-2016, 08:53 AM
November 1, 2016
Tomorrow I have the last step in the initial phase of my treatment as I'll have my first infusion. The immunotherapy drug Keytruda will be administered through an IV, and this procedure will be repeated every 3 weeks. Of all the pieces of this process, this is the one that I have the most apprehension about, and this apprehension is almost exclusively about the side effects. I know generally that the most common side effects are your basic fine print stuff, but given this is a 3 week dose, I'm curious how those side effects will play out. I'm expecting more of an impact initially, then trailing off as the days go by, but we'll see.
Breeze
11-03-2016, 10:29 AM
November 3, 2016
The infusion went off without a hitch. Thankfully, there were no allergic reactions (which apparently are relatively common). The drug didn't adversely impact me in any way during the infusion, however, it has made my GI side effects more pronounced. I also learned that the immunotherapy drug can have cumulative effects. In other words, as I do additional infusions some side effects may get worse and others that don't currently exist could become problematic.
In addition, the schedule i was given, which stated I'd have infusions every 3 weeks, isn't accurate. I'm honestly not sure what the schedule will be at this point, but I do know I will go every other week down to Emory for something. The reason I don't know what that is - is because my coordinator and the nurse had different information on what will occur on the visit in two weeks. But basically is comes down to, I'll either get an infusion every other week or I will get 1 a month and follow up blood work 2 weeks later. With this cycle (this infusion actually was the start of my second cycle) I have to go back in next week for a blood draw. I think it will just be one quick one to check the impact of the drug on my system, but I have to get confirmation on that. The potential bad side effects from the immunotherapy drug can be very significant, and given that the study is to monitor how the two drugs interact and how people tolerate it, I'll be monitored pretty closely for the next few weeks.
Breeze
11-08-2016, 01:21 PM
November 8, 2016
I have an appointment tomorrow to get blood pulled. It's just a quick check to make sure the Keytruda isn't doing a number on my system.
So far other than having more frequent and longer lasting GI side effects, I haven't noticed much. Of course that doesn't mean there isn't a problem internally. Fingers crossed the results come back clean.
Hey Breeze,
Haven't been on the dynasty forum for a while, so I'm just catching up. Just read everything. Sitting here with tears in my eyes. I don't have the words, but I hope the drugs are effective and last for a while with minimal side effects. Will be following along and hoping for positive outcomes.
Breeze
11-11-2016, 11:06 AM
Hey Breeze,
Haven't been on the dynasty forum for a while, so I'm just catching up. Just read everything. Sitting here with tears in my eyes. I don't have the words, but I hope the drugs are effective and last for a while with minimal side effects. Will be following along and hoping for positive outcomes.
Hey bud, thanks for checking in. I'll take all the positive thoughts you can muster...
Breeze
11-11-2016, 11:18 AM
November 11, 2016
So I have a confession to make. Originally, I wasn't going to get into this aspect of the journey, but I'm not sure how to portray all the emotions without it.
In late 2015, the family budget got really tight. The company I work for didn't give end of year bonuses for 2 straight years, which is tough when the bonus is basically guaranteed (2013 was the first time one had not been given) and it is the thing that moves you from slightly underpaid to well compensated. This squeeze on our income led to some changes, one of which was dropping my life insurance. I had been so healthy that it seemed unnecessary, and the plan was to add it back at the beginning of 2017.
Obviously, that didn't work out, as it is now practically impossible for me to get term life, and there is no way I'm getting anywhere close to the $500,000 plan I had (to be fair I wasn't going to get a $500,000 plan this time, but probably something around $300,000). As it turns out I did just get a guaranteed policy for $25,000 at a rate the won't kill our budget. It's not nearly enough, but hopefully, when it is needed that money combined with my work paid life insurance of $25,000 and my retirement account will be sufficient enough to keep the financial burden off my family.
Breeze
11-14-2016, 10:49 AM
November 12, 2016
Not sure if anyone is aware, I know I wasn't until after I was diagnosed, but November is Lung Cancer Awareness month. It's hard to know it because there is no catchy marketing associated with it like the pink breast cancer stuff or the ALS ice water challenge. However, the Washington Post ran a good article the other day, which includes some of the treatments I'm doing, figured I'd post it here...
Immunotherapy Moves to the Front Lines in Fight Against Lung Cancer (https://www.washingtonpost.com/national/health-science/immunotherapy-moves-to-the-front-lines-in-fight-against-lung-cancer/2016/11/10/1bdb725a-a27a-11e6-8832-23a007c77bb4_story.html)
MizzouRah
11-14-2016, 08:52 PM
Like Jag... I haven't been in the dynasty forums in quite some time. Decided to pop my head in here and after reading through this, I'm praying for you Breeze and will keep you in my thoughts.
Breeze
11-16-2016, 08:53 AM
Like Jag... I haven't been in the dynasty forums in quite some time. Decided to pop my head in here and after reading through this, I'm praying for you Breeze and will keep you in my thoughts.
Thanks MR...appreciate it...
Breeze
11-16-2016, 08:54 AM
November 16, 2016
I have another trip down to Emory today. Not sure exactly what's going to occur as the information I've gotten has been different depending on whose answering. Best guess is this will be a quick blood draw to determine the impact of the Keytruda 2 weeks in. But we'll see...
Breeze
11-16-2016, 02:51 PM
November 16, 2016
Weight - 191
Blood Pressure - 109/71
Blood work came back fine. All but 2 inside normal ranges and the two outside were right on the cusp. So far it appears the drugs aren't adversely impacting my systems.
Greyfriars Bobby
11-17-2016, 07:31 PM
I haven't been on the forum here for a while, either. I just finished reading through your thread. Your optimism and forthrightness are truly inspiring.
I will keep you in my thoughts and prayers, Breeze. Be strong.
Breeze
11-21-2016, 10:47 AM
November 20, 2016
For the first time since I started treatment, my nausea was too much to take. For some reason I developed really bad acid reflux / upset stomach on Saturday night. It was to the point that I felt like my pill had gotten stuck in my throat. I made it through the night, but woke up the next morning feeling ill. I was able to quell the feeling a bit by choking down a bagel and sipping on water, but then came time for my morning pill. That just ramped everything back up.
I'm hoping this isn't a bad omen and I really hope this side effect doesn't become more common.
Breeze
11-21-2016, 10:48 AM
I haven't been on the forum here for a while, either. I just finished reading through your thread. Your optimism and forthrightness are truly inspiring.
I will keep you in my thoughts and prayers, Breeze. Be strong.
Thanks GB...
Breeze
11-23-2016, 08:34 AM
November 23, 2016
Today starts Phase 2. I go in this afternoon for my second infusion. Will be on the lookout for the dreaded cumulative side effects.
Hoping it goes smoothly so I can enjoy my Thanksgiving.
PilotMan
11-23-2016, 11:50 AM
Me too. I want you to be able to have one incredible, fantastic Thanksgiving.
:thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:
BYU 14
11-23-2016, 06:13 PM
Ditto from me as well, wishing you a very happy and enjoyable Thanksgiving.
Breeze
11-29-2016, 01:33 PM
November 29, 2016
Nausea got so bad this morning I had to turn around and go back home. No way was I going to make it through traffic to the office without getting sick. The nausea has become much more prominent in the last week to 10 days.
Tomorrow is another blood pull. Thankfully, this part of my trial is about over for a while.
BTW...Thanksgiving went great! Thanks again for the well wishes and prayers.
Breeze
12-02-2016, 12:51 PM
December 2, 2016
I got the following text today from my coordinator, "The sponsor would like to know if you have been taking Tylenol/acetaminophen"
This is a HUGE red flag. I have not been taking Tylenol because I know that it's very hard on the liver and I also know the drugs I'm taking can be hard on the liver. This question indicates my liver enzymes from the blood pull on Wednesday are off. I asked and apparently they are returning as Grade 1 high, but they are slowly climbing with each pull...
I don't know what options I'll have if this climbing continues.
Breeze
12-07-2016, 08:36 AM
December 7, 2016
I have another (and hopefully the last for a while) visit for a quick blood pull. The key today is for the blood to show reduced or at least stabilized liver enzymes. I have been working on changing my diet since I received the text about taking Tylenol. I've been really focused on eating and drinking things that are good for the liver - leafy green vegetables, apples, lemons (and other citrus), green tea, cabbage and walnuts. Grapefruit may be the best thing, but I can't have that, it interferes with the Xalkori. Fingers crossed that labs come back with positive results.
Breeze
12-08-2016, 04:12 PM
December 8, 2018
So one of the two liver enzymes came back lower, the other creeped up a bit more. I don't know if this is good or not because I wasn't told which enzyme was the concern. Regardless, the results didn't trigger any alarms because no comment was made. I'll continue with my new diet and hope for further improvement next Wednesday when I start my 3rd cycle.
I have recently decided that I'm going to purchase 3 leather bound composition style notebooks/journals, where I will start writing down my thoughts on any and all topics. Given the uncertainty of stage 4 cancer, I want to have something to leave with my kids. I hope my treatments allow me to be around for years to come, but If I'm not available to offer advice or support, maybe my words will offer some comfort or guidance. I won't tell them I'm doing it, but hopefully, it will be something they appreciate when I'm gone.
Great idea.
Glad to hear the results were pretty decent considering the red flag post.
Breeze
12-13-2016, 08:24 AM
December 13, 2016
Cycle 3 starts tomorrow. Hopefully, the liver friendly diet will once again show more stable liver enzymes, and hopefully the infusion doesn't have major side effects, because the wife and I are supposed to go to her company Christmas party that night.
CraigSca
12-13-2016, 08:45 AM
Hoping the Christmas party goes well - are you allowed to go outside the bounds of the liver-friendly diet for a night or two?
Breeze
12-13-2016, 10:26 AM
Hoping the Christmas party goes well - are you allowed to go outside the bounds of the liver-friendly diet for a night or two?
The liver friendly diet is of my own making, so I'm sure the doctor wouldn't mind. And honestly, this liver friendly diet isn't as much about denying myself any specific item, but rather eating things that are good for lowering liver enzyme production (green tea, leafy greens, apples, oranges, walnuts, etc). We are apparently ordering off the menu at a local restaurant this year so I'm sure I'll have numerous options that will fit the diet anyway...if I feel up to going I'll probably end up eating salmon.
Breeze
12-15-2016, 12:51 PM
December 15, 2016
Weight - 195.2 (again with jacket and boots so probably my typical 192 weight is more accurate)
Blood Pressure - 122/76
The infusion went fine. No real impact other than it made me a little tired. I did get some acid reflux about the time the IV was finishing up, which also happened in Cycle 2, but a little food and that feeling went away. The big news is my liver enzymes (AEs) came back within normal range. So looks like the diet is helping! Unfortunately, I didn't feel up to going to the Christmas party. Having to battle traffic to get there, not getting home until late and getting up really early to take the kids to swim practice was just too much.
CraigSca
12-15-2016, 03:03 PM
Understood on the party. Glad to hear the infusion is having minimal impact on you. Keep fighting the good fight!
JonInMiddleGA
12-15-2016, 03:40 PM
Good work on the liver enzymes.
BYU 14
12-15-2016, 08:43 PM
Great news on the Liver enzymes!!
Breeze
12-20-2016, 07:58 AM
December 20, 2016
Thanks for the well wishes, all. I was really pleased with the enzyme report from my last infusion.
On Friday (16th), I had my follow up MRI to see if any new brain lesions have formed. I thought I had posted this already, but obviously I didn't. I have to admit, going in for this on a Friday, and sitting here on a Tuesday still waiting for results is unnerving. I have to believe this is a similar feeling to someone on trial waiting for a jury to reconvene. I really don't want to go through another Gamma Knife treatment just yet so I'm saying my prayers right now. I'll post the findings once I know something.
CU Tiger
12-20-2016, 11:20 PM
Breeze just saw this.
Prayers and thoughts are with you and your family.
I'm amazed and inspired by your strength, candor and perspective.
You can beat this. One day at a time.
I'm pulling, praying and right now crying a touch for you. Your words are an inspiration.
CraigSca
12-21-2016, 07:32 AM
Any idea when you'll hear the results of the MRI?
garion333
12-21-2016, 09:07 AM
(Continue to) Hang in there!
Breeze
12-21-2016, 11:00 AM
Any idea when you'll hear the results of the MRI?
Hoped I would hear yesterday, but I didn't. I figure it will be any time now.
Breeze
12-21-2016, 11:01 AM
Thanks CU and garion...
Breeze
12-21-2016, 03:15 PM
December 21, 2016
I just got a call from the hospital. I recognized the number on my phone. As I was answering the call my heart started pounding in my chest as my anxiety rose awaiting the results of my MRI. Only problem was, it ws the business office calling to get a payment. Ugh...still waiting on results.
CraigSca
12-21-2016, 03:46 PM
Can't even imagine what you're going through, but I was skipping to the end of your statement so I could just get to the results myself. Let us know...
PilotMan
12-21-2016, 07:34 PM
Totally agree with Craig. We had our family Christmas today and you were on my mind. Stay strong brother.
Breeze
12-23-2016, 12:08 PM
December 23, 2016
Just heard back from the Dr. on the MRI. Before my Gamma Knife treatment there were 2 spots they treated and 1 area they expect was a vascular region they wanted to monitor. After the follow up MRI, 1 of the treated spots is completely gone, 1 is now very faint and not growing, and the area believed to be a vascular region shows no change which they feel confirms the vascular region diagnosis. Most importantly, there are NO NEW SPOTS! Thank God!
I will now have another 3 months until my next MRI follow up, but I'll have my follow up CT Scan on the 27th and a meeting to discuss the findings on the 4th (during my 4th cycle). Then I will find out how effective the Xalkori/Keytruda treatments have been.
Given how close to Christmas it is, I doubt I'll update this again until after the holiday, so if you are reading along Merry Christmas to you...
JonInMiddleGA
12-23-2016, 01:14 PM
Most importantly, there are NO NEW SPOTS!
Merry Christmas :)
digamma
12-23-2016, 01:29 PM
Merry Christmas. Continued best wishes.
MizzouRah
12-23-2016, 03:06 PM
Merry Christmas indeed! :)
law90026
12-23-2016, 09:12 PM
Merry Christmas
CraigSca
12-23-2016, 09:33 PM
YES, YES, YES! Awesome news! Have a nice, quiet, restful Christmas!
BYU 14
12-24-2016, 03:59 PM
Great news, wishing you and the family a very Merry Christmas!
Young Drachma
12-24-2016, 10:44 PM
Glad for the positive news. All the best to you!
hoopsguy
12-26-2016, 09:42 AM
Congrats on the recent report! Hope that you had a terrific Christmas with your family.
Breeze
12-27-2016, 06:59 AM
December 27, 2016
Thank you guys so much for the well wishes, and I did have a very nice Christmas by the way.
Today I have my follow up CT scan. This will let me know how effective the Xalkori/Keytruda has been so I'm saying my prayers for a good result. Unfortunately, I won't find anything out until the 4th, when I go back in for my next infusion.
I do have some disturbing news to report. Over the last couple of days I've had moments where there was discomfort under my rib cage on the left side.
I wouldn't qualify it as pain, but it also isn't a normal experience for me. I haven't said anything about it to the wife yet because I don't want to ramp up her anxiety during the holiday, and honestly there is nothing that will be done about it until the results of my scans are studied. This actually creates an bit of an enigma in that - if this discomfort is the cancer, and it is growing, I may not know it on this scan, because when I started the treatments all my chest pain initially went away - so it is possible the drugs killed the cancer cells initially, but they've grown back, but potentially not to the point they were when I was initially diagnosed. Meaning I guess I really won't know if things are looking positive for sure until April sometime when I'll have my 2nd follow up CT scan.
Sometimes I marvel at my own stupidity. This morning because I have the CT scan I can't eat for 3 hours before the procedure. During the night I woke up and I never really got back to sleep as I stayed in this semi-conscious twilight for about 90 minutes. During that time my mind raced through different things, one of which was the need to eat early so I could take my pill. During that stage I determined everything would be fine because I had to get up early to take the kids to swim practice and I'd make a protein shake at that time for myself so I could take my pill and not get sick. Only problem was, when I woke up, and consciously thought about my need to eat, I decided I'd wait until I got back home after dropping the kids off from swimming, which put me at home less that 3.5 hours before my appointment, leaving me to rush through making and drinking the smoothie (which of course led to several incidents of brain-freeze...:) )
Breeze
01-05-2017, 08:44 AM
January 5, 2017
Started cycle 4 yesterday, and other than having an extremely long wait for the medicine to be released from pharmacy it went just like the rest of the treatments. The big new from yesterday was the results of my CT Scan. The main doctor came down to talk with me and he reported that:
- There are no new cancer cells
- No existing cells have gotten any bigger
- The big cancer spots have all gotten smaller
So the news almost couldn't be any better. Given the treatment is working well I will continue down this road until the disease shows resistance to the medicines.
JonInMiddleGA
01-05-2017, 09:25 AM
Happy New Year indeed :)
Subby
01-05-2017, 09:37 AM
That is fantastic news! Woohoo!
Kodos
01-05-2017, 11:13 AM
Wow! Great to hear! To be honest, I often hesitate before clicking on this thread because I'm afraid about what the next update might be. But then I tell myself that you have no choice in the situation, and the least I can do is check in and try to lend you a little support if possible. Glad to hear about things heading in a good direction. :)
CraigSca
01-05-2017, 02:22 PM
YAY!
Breeze
01-23-2017, 11:49 AM
January 23, 2017
I start cycle 5 on Wednesday. This should be a pretty easy visit as I won't have to have extra blood taken or EKGs done. However, the one in mid February will be another vampire visit with blood being taken every hour.
MizzouRah
01-23-2017, 01:00 PM
Great news! :)
PilotMan
01-23-2017, 04:00 PM
Keep it up! Good to hear!
BYU 14
01-23-2017, 07:03 PM
Great news to get the year rolling right!!
Kodos
01-24-2017, 08:58 AM
:)
Breeze
01-27-2017, 08:12 AM
January 27, 2017
Well everything went off without a hitch at the infusion. In fact, my liver enzymes came back well within normal ranges, so that was a huge plus.
Did find out that I'll be having another CT scan in early February. That's about 6 weeks earlier than I expected to have it. Apparently the CT scans are every 6 weeks not every 3 months. It's a hassle, but it isn't like laying down and getting scanned for 45 minutes is difficult. My only concern is the contrast. The steroids I took prior to the last scan seemed to prevent me from having a reaction. Hopefully, they will continue to help.
Breeze
02-06-2017, 08:26 AM
February 6, 2017
Tomorrow, I have my second CT Scan since starting my treatment. I'll take my medication to prevent reactions to the iodine dye tonight and again in the morning. I'm praying the results show the medications are continuing to work on the cancer so I can maintain my new status quo. Unfortunately it will be the 15th before I know the results. I'll let you know as soon as I know something.
BYU 14
02-06-2017, 09:27 AM
Thoughts and prayers for positive results friend.
JonInMiddleGA
02-06-2017, 10:54 AM
May your meds do their mojo and you find patience while waiting for good news afterwards.
Kodos
02-06-2017, 11:05 AM
Sending good thoughts your way, Breeze.
MizzouRah
02-06-2017, 03:27 PM
Thoughts and prayers sent!
hoopsguy
02-06-2017, 11:08 PM
Best of luck with scan and results.
Breeze
02-10-2017, 07:49 AM
February 10, 2017
The scan went off without a hitch. In fact, it took longer to drive to the hospital, home from the hospital, and even fill out the paperwork than it did to get scanned. Unfortunately, I did learn that this scan isn't covered by the clinical trial...it's own my insurance and is a cool $800 I don't have. Add this bill to stack of other medical bills that we are paying off very slowly...
I called yesterday down to Emory in hopes of getting the results of the scan early so Cathy doesn't feel the need to attend (so she can take care of kids' morning routine instead). However, they won't reveal the results over the phone. I guess I'll have to wait until the 15th to hear if the medications are still working.
Thanks for the all the well wishes, prayers, and kind thoughts. They are much appreciated.
Breeze
02-13-2017, 03:42 PM
February 13, 2017
Just got a bill today from Emory. Apparently, the clinical trial I'm in covers the medications, but the administering of said medications. So after sending the cost my treatments to my insurance company, I got hit with a bill for $5555. This was a thoroughly unexpected and unwelcome surprise...
Breeze
02-14-2017, 08:09 AM
February 14, 2017
I go in tomorrow for the start of cycle 6 and my vampire session of blood testing. I'll also find out the results of my scan from the 7th. I have to admit that waiting around 8 days for the results of scan that ultimately could have a major impact on your life is extremely stressful. I'm going to request moving forward that my scans are done 3 or so days before my next visit so I don't have to deal with this long wait again.
CraigSca
02-14-2017, 08:12 PM
Can understand that. I know that labs are overstressed, but it always amazed me how long people have to wait to hear for results of test that will impact their lives to such a degree.
My prayers continue to be with you.
Breeze
02-16-2017, 08:23 AM
February 16, 2017
The results of the scan were good. No new spots, no growth of existing tumors, and the pleural lining where one of the bigger cancer spots exists has gotten thinner. So some slight improvement over the scan in December. With that in mind I'll will continue on with my current treatment of 2 pills a day and Keytruda every 3 weeks. My next CT scan will be close to my MRI at the end of March. I also requested in the future that my CT Scans be much closer in time to my infusions so I don't have to wait so long for results. I told them the 8 days this time were excruciatingly stressful. So hopefully, I won't have that to deal with moving forward.
JonInMiddleGA
02-16-2017, 08:41 AM
So hopefully, I won't have that to deal with moving forward.
Here's to that.
Rock on.
Kodos
02-16-2017, 09:31 AM
Good news. :)
Great news, happy to hear it.
MizzouRah
02-17-2017, 08:56 PM
Yes, good news! :)
MIJB#19
02-21-2017, 03:22 PM
New to the thread, I'm just posting to wish you the best of luck in your recovery, Breeze.
Breeze
02-22-2017, 02:31 PM
February 22, 2017
Just got a text from my coordinator to inform me that the keytruda (immunotherapy) drug has some new safety warnings. Apparently, taking the drug can lead to Stevens-Johnson Syndrome, Toxic Epidermal Necrolysis (that's not a pretty thing) and immune mediated myocarditis.
I'm pretty sure the myocarditis warning is due to 2 Optiva patients that died following their initial treatment with that drug, and given Keytruda is also a cancer immunotherapy drug the warning was added to it as well.
I'll continue on with the trial even with these new potential side-effects, because ultimately I figure it is worth the risk. Plus most of these new problems are reported about 14 days after the first dose, and I'll be having my 7th in a couple of weeks. Just one more thing that I need to pray about...
MizzouRah
02-22-2017, 02:56 PM
I'll continue to pray for you and hope for more positive progress.
BYU 14
02-22-2017, 04:15 PM
Keeping the good vibes coming my friend and praying you are past the danger point of the side effects indicated.
Breeze
02-23-2017, 03:43 PM
February 23, 2017
I really debated putting this in the thread...but figured if I didn't this ends up simply being a log of my visits to the doctors...
A few weeks ago one of the girls on the swim team announced at practice that her father only had a few days left to live. He was dying of cancer that had spread throughout his body (as a quick side note, he was able to recover enough to go home for now). This really hit the kids hard. You see I've been doing so well that I'm sure it's pretty easy for the kids to go about the day as if there is no problem. I'm not getting sick all the time, I'm not losing weight or my hair, and all I really need to do is take a couple of pills. They know I have cancer, we don't avoid the topic or try to hide anything, but the impact is minimal especially to them right now. This announcement sort of woke them up a bit.
Fast forward to last night. For the first time, one of the kids actually admitted that it was really bothering them. Brett, who's really struggled with pretty much everything this year, after arguing with us for a long time got to talking with the wife and during the discussion he talked about how he was depressed, how he wasn't motivated to do school work, and how he was afraid to lose his dad. He mentioned it over and over periodically throughout the conversation, even saying to Cathy, "I know he's your husband, but he's my dad, do you know what it is like to think about losing your dad."
This brings tears to my eyes just writing this, as it is the worst part of the entire diagnosis. As I said when I was first informed that I had cancer, "I want to be here for my kids..."
Obviously, this is just the first of what will probably be many more gut wrenching moments. I just pray they are stretched out over a very long period of time...
MizzouRah
02-23-2017, 05:19 PM
That's horrible... :( I thank God everyday for my health and the health of my family. I can't even imagine how hard it is for your children, let alone his/your wife.
I pray they find a cure someday.
JonInMiddleGA
02-23-2017, 09:27 PM
I can only sigh ... 'cause, honestly, I got nothing to offer that feels worth a flip under the circumstances :(
hoopsguy
02-24-2017, 06:15 AM
I've had several friends lose their father in the past few years, and that is emotional for me because it gets me started thinking about potentially losing my 72 year old father. The difference is that most of my friends are in their late 30s/early 40s and have had a far longer run than what Brett is staring in the face. My heart goes out to all of you.
Kodos
02-24-2017, 11:40 AM
Yeah, that's a heartwrenching situation. No kid should have to lose their Dad so young.
AnalBumCover
02-24-2017, 02:11 PM
As difficult this situation is for all involved, at least the silver lining here is that your son has opened up his feelings and communicated his fears rather than bottling it all in. He is and will continue to be a much better person for doing so.
Breeze
03-07-2017, 04:13 PM
March 7, 2017
Cycle 7 starts tomorrow...
Breeze
03-09-2017, 08:27 AM
March 9, 2017
The blood work came back with all readings registering as within normal limits. Thank goodness for green tea and lemons. MRI and CT scans in about 2 and half weeks...
BYU 14
03-09-2017, 09:57 AM
Great news my friend!!
JonInMiddleGA
03-09-2017, 10:43 AM
Woot !
CraigSca
03-09-2017, 12:20 PM
Wow! Great news!
PilotMan
03-10-2017, 10:31 AM
Great news Breeze! Happy to hear it!
MizzouRah
03-16-2017, 07:54 AM
Great to hear!!!
Kodos
03-16-2017, 09:35 AM
:)
Breeze
03-23-2017, 02:52 PM
March 23, 2017
I have my second MRI follow up tomorrow. The first one about 12 weeks back went well showing no new spots, one of the treated areas showing no signs of cancer and the other fading significantly following the Gamma Knife treatment. Hopefully, this one will show the second spot to be gone and no new spots!
Breeze
03-27-2017, 07:35 AM
March 27, 2017
CT Scan today...
BYU 14
03-27-2017, 08:50 AM
Sending positive vibes!
Breeze
03-29-2017, 02:36 PM
March 29, 2017
Started cycle 8 today. Also I got the result of my MRI yesterday, and today I got the report on my CT Scan.
The MRI was clean, showing no signs of any problems. I was quizzed about headaches, vision issues, tingling and numbness, but I checked out ok on all of that as well.
The CT Scan showed no new spots, no new growth and a slight reduction of the mass on the pleural lining.
So things are still looking good. I'll continue with my currently treatment for now (and hopefully for much much longer).
bbgunn
03-29-2017, 07:42 PM
Excellent! I'm really happy for you.
PilotMan
03-30-2017, 08:32 PM
Wow! That is great news Breeze! Very good to hear.
Kodos
03-31-2017, 08:11 AM
Very good report! :)
Cap Ologist
03-31-2017, 09:07 AM
Great news!
SplitPersonality1
03-31-2017, 02:11 PM
Very good news.
JonInMiddleGA
03-31-2017, 04:38 PM
:banana:
Breeze
04-18-2017, 11:50 AM
April 18, 2017
I start cycle 9 tomorrow. I've still been feeling good. In fact, I've started walking most nights to get exercise (I read somewhere that cancer patients that exercise tend to do better on treatments). In total I'm walking between 12 and 20 miles a week, typically walking 5 of the 7 days.
I am a little concerned with traffic getting to and from the Emory location as I'll go right by the section of 85 that collapsed recently. It looks like my normal exit is still open, just not sure how many people are going to be forced to get off with me now, which could create a good deal of congestion on some surface streets.
Breeze
05-09-2017, 08:13 AM
May 9, 2017
Things have been an extremely difficult lately. My health has been ok, with the exception of the stress that Brett has created. He is really struggling right now. His up and down health this year, combined with my diagnosis really has been hard on him. In fact, the wife and I believe that he is struggling with borderline depression. We have even taken him to a psychologist who it appears from his questions has the same suspicions. Making matters worse, his girlfriend (effectively his first ever) is manipulating him in a way that she appears to be the only thing in his life that is good. He has basically given up swimming, stopped doing things with his friends, and he'll now probably fail several classes - all because the only thing he wants to do is talk, text, or spend time with the girlfriend.
I start my 10th cycle tomorrow as long as my CT scan from the 5th comes back with good results.
JonInMiddleGA
05-09-2017, 10:06 AM
all because the only thing he wants to do is talk, text, or spend time with the girlfriend.
I'm reminded of what a veteran Scout leader said about how important it was for prospective Eagle Scouts to complete their requirements as soon as possible
"They gotta do it before the fumes hit"
"Fumes?
"Yeah. Car fumes and perfumes"
Breeze
05-12-2017, 08:48 AM
May 12, 2017
The scan came back with good results. I didn't get a chance to talk with the Dr. so I have to go by what I was able to determine from my copy. Apparently, the spot in my lung remains the same size, there was no mention of the thickening of the pleural lining (not sure if that was an oversight or it wasn't present in the scan). Also the pleural effusion is gone - so no more water between my pleural lining and the lung.
Also got some interesting insight into the trial. I found out that I am currently 1 of 2 people still on the trial. They are still trying to find more subjects but they are having a hard time. Also, apparently, I'm the star patient. My good response to the treatment, along with my minimal side effects has proven the two drugs can be taken simultaneously, and it has bolstered the optimism of the researchers that this may be a viable first stage treatment in the future.
Kodos
05-12-2017, 09:00 AM
Good to hear!
Breeze
05-30-2017, 12:19 PM
May 30, 2017
11th Cycle starts tomorrow. Hopefully, this will be a quick visit, given there are no extra blood draws and no scan results to go over...
BYU 14
05-30-2017, 12:54 PM
May 30, 2017
11th Cycle start tomorrow. Hopefully, this will be a quick visit, given there are no extra blood draws and no scan results to go over...
Continued good vibes buddy!!
JediKooter
05-31-2017, 10:45 PM
Oh man, just read some of your posts in this thread and I'm very happy to hear that you are giving the Big C the Big Middle Finger!
Breeze
06-01-2017, 09:54 AM
June 1, 2017
It wasn't a quick visit by any stretch, but labs continue to be good and I'll continue with my standard treatment.
CraigSca
06-16-2017, 02:16 PM
Still reading this and still rooting for you!
Breeze
06-20-2017, 06:26 AM
June 20, 2017
Last week was the rescan portion of my treatment. I had my MRI on the 12th and my CT scan on the 16th. I'll get the results of the CT on Wednesday when I go back to Emory for my next infusion, but I got my MRI results yesterday. Unfortunately, there is a new small spot on the brain. However, the spot is very small which means there are a number of things that might happen, and given the uncertainty of the situation, the doctor is currently just planning to monitor it. The only current change in my treatment due to this new spot appearing is a shortening window between scans. My next MRI will be in 8 weeks now rather than 12.
Breeze
06-23-2017, 05:55 AM
June 23, 2017
The CT scan came back clean. So while the MRI led to some concerns my treatments won't change. I'm good for another 6 weeks...
BYU 14
06-23-2017, 08:11 AM
Awesome!! Great to hear.
Very glad to hear the CT scan was clean.
Breeze
06-23-2017, 01:32 PM
Sorry I just realized that I probably was misleading with my last updated...I guess my terminology could use some work. When I said clean, I probably should have said no change. Given the bad news from the MRI I more than half expected to be told the cancer was growing. When it wasn't I was too quick to adopt the "clean" label. Basically, because no change from the previous scan means I'm still doing pretty good. In fact, I'll be thrilled to have this same scan for the next 20 years. As long as things don't get worse, I get to continue with my treatments "as is", and given that the side effects are minimal, I'm ok with that.
Breeze
07-13-2017, 06:07 AM
July 13, 2017
Started cycle 12 yesterday. Weight is up (going to need to start getting more exercise again) and blood pressure was a bit higher than normal, but still ok. The labs continue to look good as well.
Good deal, appreciate you continuing to update us.
JonInMiddleGA
07-13-2017, 02:18 PM
Rock on.
Breeze
07-24-2017, 06:32 AM
July 24, 2017
CT Scan tomorrow right before heading off on vacation. Will get the results on the 2nd when I have my next infusion.
Breeze
08-07-2017, 02:28 PM
August 7, 2017
I am in Cycle 13 now. My treatment on Wednesday was fine. Took 3 tries to tap the vein for the infusion, which was unpleasant and I have some really nice bruising on my arms to show for it, but otherwise it was fine. The results of the CT scan were good. Still no new growth and no change to the cancer in my lung. I'll continue on with the status quo.
I do have my next MRI on Friday. They will be taking a close look at the small spot on my brain they spotted 8 weeks ago. Saying my prayers that is it gone or at least not any larger. I'd rather not have to get the halo for the gamma knife screwed into my head again yet.
Eaglesfan27
08-07-2017, 02:46 PM
Wow. I never read this until now. You will be in my prayers.
PilotMan
08-07-2017, 03:28 PM
Pulling for you big time!
Breeze
08-08-2017, 07:37 AM
Thanks again guys. Appreciate the well wishes...
Kodos
08-08-2017, 08:20 AM
Here's hoping for a good result. Keep on clearing those hurdles!
Breeze
08-15-2017, 06:38 AM
August 15, 2017
The MRI results from last week showed 6 spots on my brain that will require immediate treatment. I'll be undergoing Gamma Knife surgery again within the next 2 weeks. The good news is all 6 spots are extremely small, the bad news is one of the spots is in my brainstem, which means there is a possibility of some sort of permanent damage (paralysis, loss of feeling in a part of the body, memory issues, etc.).
Moreover, this will likely end my participation in the clinical trial. While the Crizotinib has worked well on my lungs, it is known to not cross the blood/brain barrier well. Given how many spots popped up this time around, I'm expected to be pulled from my current drug and placed on the Phase 2 drug which is supposed to be better at keeping the cancer in the brain from propagating. I won't know for sure how this will play out for a while, as the two doctors have to discuss the plan on moving forward. Obviously, I'll update the tread when I know more.
PilotMan
08-15-2017, 08:14 AM
Shockingly bad news. You and your family are most certainly in my thoughts right now. I know they are suffering too and this news will be hard to handle. Hang in there.
chesapeake
08-15-2017, 08:39 AM
Very sorry to see this. Keep battling!
Eaglesfan27
08-15-2017, 03:19 PM
You and your family will be in my prayers!
MIJB#19
08-15-2017, 03:46 PM
Darn, that's a setback.
Best wishes for battling this, Breeze.
JonInMiddleGA
08-15-2017, 05:30 PM
Well ... fuck :(
Battle on.
BYU 14
08-15-2017, 08:21 PM
Damn, sorry to hear. Wishing you all the best and keep swinging brother!
Breeze
08-23-2017, 02:47 PM
August 23, 2017
I had my visit to Emory today for the start of Cycle 14, but as expected my time on the clinical trial has come to an end. The doctor explained that the appearance of 6 spots indicates the brain is "bad soil" and that without making a change the spots will start to appear with more regularity. I'm being put on the stage 2 drug for ALK mutations, but it'll be about 10 days to 2 weeks before insurance approves the change and I can start taking the drug. I'll have to finish out my paperwork and scans for end of trial information, but once that is completed I'll just be taking a drug a couple of times a day and I'll go in for regular blood work and scans (with blood work more frequent in the early days of the new drug being introduced to my system).
Looking back on my time on the trial - I was extremely pleased that the drug was initially very effective and that the side effects were minimal. However, I was hoping and praying the trial would last longer than it did.
Kodos
08-23-2017, 03:46 PM
Sorry to hear about this bad turn of events. Keep on fighting, Breeze. We're all rooting for you!
Breeze
08-28-2017, 10:09 AM
August 28, 2017
Gamma Knife surgery tomorrow at 5:30 A.M. Praying that no new spots appeared in the 2 weeks between initial diagnosis of the 6 spots scheduled to be treated and the actual treatment taking place.
Kodos
08-28-2017, 10:43 AM
We're all pulling for you, Breeze. Sending good thoughts your way.
Breeze
09-05-2017, 10:14 AM
September 5, 2017
I'm back at work for the first time since the Gamma Knife treatment. I did work from home for a few days at the end of the week, but I didn't really get out of the house until Sunday.
The treatment was exactly the same as last time. The MRI prior to the surgery uncovered 4 more small spots that had to be addressed, bringing the total lesions to 10. This was a concerning sign. I was hoping there wouldn't be anything new.
Currently, I'm ok, the screw holes are still a bit sensitive, and my scalp is still numb in places, which is annoying, but otherwise I'm doing pretty good.
I also started my new meds on Sunday. I'm now on Alectinib, which so far has been even easier to tolerate than the xalkori/crizotinib. In fact, the only thing I've noticed so far is it really drys me out. Like taking extremely strong decongestants. My sinuses are really dry and I'm not producing much saliva. During the day, this isn't an issue because I drink so much water, but at night it makes it really difficult to sleep...I'll be trying some dry mouth treatments tonight. Hopefully, they work because I need a good night sleep.
chesapeake
09-05-2017, 10:58 AM
I hope the treatment proves successful. Sorry to hear about the sleep problem on top of everything else. Just about any problem is easier to face after a decent night's sleep.
BYU 14
09-05-2017, 11:17 AM
Sending positive vibes and hoping this treatment is successful. All the best buddy!
Breeze
09-05-2017, 01:51 PM
I hope the treatment proves successful. Sorry to hear about the sleep problem on top of everything else. Just about any problem is easier to face after a decent night's sleep.
Thanks chesapeake, it's annoying, but it could be SO MUCH worse, I'm not complaining. I'll figure something out. Funny thing is, this dry mouth issue isn't listed as a known side effect.
CU Tiger
09-05-2017, 07:18 PM
In my prayers. Keep fighting and kicking it's ass.
Breeze
09-19-2017, 06:24 AM
September 19, 2017
Just a quick update. The side effects of the new meds are minimal so far. Now just praying that they are effective, and effective for a very long time.
Eaglesfan27
09-19-2017, 11:59 AM
Praying for the same for you.
MIJB#19
09-25-2017, 02:33 PM
Just dropping by to wish you the best of luck in the process, Breeze.
Breeze
10-23-2017, 07:47 AM
October 23, 2017
I know things have been pretty quiet here for a while. Thankfully, there has been very little to report. My new meds have minimal side effects, and unlike the trial, I don't interact with the doctors as much. However, I am coming up on some really important scans. The first one is tomorrow. I'll have my first CT since I changed meds. The Xalkori was working extremely well on the lung portion of my cancer, so I'm hopeful this second stage drug will do as much or more. I will have my follow up with the doctor the following week. I'll have my MRI on the 10th which will be my first following the second Gamma Knife surgery. This will show if the treatment was effective and if any new spots have appeared in the intervening time.
Scans are a stressful time because a bad report means a change in treatment and there are only so many treatments available. These scans are even more stressful because they are following the change over from the trial to the new meds. Saying my prayers the scans look good and the meds continue to work for a long time.
PilotMan
10-23-2017, 08:02 AM
Thanks for the update. You've been in my thoughts for sure since you hadn't updated for a while. New scans and tests are always stressful. Hang in there and try not to think too much about it beforehand.
Kodos
10-23-2017, 08:57 AM
Best of luck for good results on your scans. Sending good thoughts your way.
hoopsguy
10-24-2017, 05:33 AM
Good luck with the tests/results over the next few weeks.
Breeze
11-01-2017, 05:46 AM
November 1, 2017
The CT Scan results ended up being great. No indication of any cancer in the abdomen or pelvis, and the lungs continue to show no change. So no new growth and no increase in size of the existing tumor.
Next up the MRI...which I'll have in about 10 days...
Kodos
11-02-2017, 08:52 AM
Great to hear!
Breeze
11-06-2017, 11:33 AM
November 5, 2017
My MRI has been moved from Friday to tomorrow...
Also, as I believe I've mentioned previously, my new meds have cause me to deal with dry mouth. Unfortunately, this has caused a previous issue I had with my gums to get worse. Now I need to have a gum graph done and a support bracket placed behind my front teeth.
The good news is that if the doctor states it is medically necessary then health insurance will cover it, and with my max out of pocket met then I should be fine.
Problem is, there are no periodontists in network within 30+ miles, so I'll have a 20% out of pocket fee, and every periodontist I talk with wants me to pay up front and then let insurance reimburse me, and I don't have $3000 to $5000 available to pay for the procedure.
PilotMan
11-06-2017, 12:46 PM
You might be able to fight with the insurance that there were no service providers within a reasonable distance and get them to cover it as in network. It won't be easy it fat though.
Breeze
11-09-2017, 09:46 AM
November 9, 2017
My radiology oncologist just called me. The MRI showed that 8 of the 10 spots treated are completely gone. The two remaining are significantly dimmer (so probably are dying) and no new spots showed up. He described the scan as fantastic. So I'm free until my next scan in February.
Thanks again all for thoughts and prayers.
AnalBumCover
11-09-2017, 09:58 AM
This is great news. And it looks like you get a little break to enjoy this holiday season as well!
Keep up the fight, we'll continue our prayers. And together we will beat this thing.
JonInMiddleGA
11-09-2017, 10:09 AM
Woot.
PilotMan
11-09-2017, 10:13 AM
That is awesome news. So happy you have that going into the holidays! Just awesome!
chesapeake
11-09-2017, 12:57 PM
Very glad to see this great update.
Kodos
11-09-2017, 01:52 PM
Awesome!
digamma
11-10-2017, 06:37 AM
Late to this but great news!
CraigSca
11-10-2017, 02:23 PM
Hurray! Great news! Have a great Holiday season with the fam!
Cap Ologist
11-10-2017, 03:06 PM
Great news!
Fantastic news, very happy for you and the family.
BYU 14
11-11-2017, 06:18 AM
Awesome news, a great early Christmas present!!
hoopsguy
11-11-2017, 02:53 PM
Congrats, great to hear.
Breeze
01-22-2018, 04:14 AM
January 22, 2018
CT Scan time again. Saying my prayers for a good result.
MIJB#19
01-22-2018, 02:12 PM
Fingers crossed...
Breeze
01-24-2018, 06:04 AM
January 24, 2018
The CT follow up was yesterday and the scan showed no change in the spot on the lung. The radiologist did report seeing an anomaly on the liver but he was unable to determine what it was. He stated it was unclear if it was a fatty deposit, potentially precancerous legion or something else entirely. The doctor said he didn't see it when he looked at the scans. Not that he didn't think it was potentially cancerous, but that he literally didn't see what the radiologist was referring to. He also stated that he doesn't think that there is anything to be concerned about because he'd be surprised if cancer popped up in a new location right now. He stated he would expect to see the medications become ineffective with the areas that are already a problem before a new spot would appear.
So I'm good on this end for another 3 months and will have my next scan in late April. Now focused on getting a good report on the MRI in a few weeks.
digamma
01-24-2018, 10:09 AM
Keep it up!
PilotMan
01-24-2018, 10:13 AM
That is fantastic news!
chesapeake
01-25-2018, 08:53 AM
Glad to see the good report.
Kodos
01-25-2018, 10:19 AM
Great news!
MizzouRah
01-25-2018, 07:53 PM
Great news indeed!
Breeze
02-07-2018, 08:51 AM
February 7, 2018
I was supposed to get my MRI on Saturday, but I can't afford it, so it's being pushed back. Being sick sucks...
Edit: Ok borrowed a credit card from the in-laws to put the down payment on the scan, so I will have my scan this Saturday...
MizzouRah
02-07-2018, 08:33 PM
February 7, 2018
I was supposed to get my MRI on Saturday, but I can't afford it, so it's being pushed back. Being sick sucks...
Edit: Ok borrowed a credit card from the in-laws to put the down payment on the scan, so I will have my scan this Saturday...
Praying for GREAT NEWS!
Breeze
02-19-2018, 11:29 AM
February 19, 2018
I get the MRI results today...
BYU 14
02-19-2018, 12:01 PM
February 19, 2018
I get the MRI results today...
Wishing all the best my friend, positive vibes your way!
Cap Ologist
02-19-2018, 03:42 PM
Prayers for a good report!
Eaglesfan27
02-19-2018, 07:37 PM
Praying for good news!
PilotMan
02-19-2018, 08:04 PM
Pulling for a great report!
Breeze
02-20-2018, 05:53 AM
February 20, 2018
The results were good. The scan continues to show just the 2 small spots that are fading after the Gamma Knife treatment. Basically the same as my previous scan 3 months ago. The doctor was please, so I'm pleased. I'll do it again in 3 months. Thanks again for all the support.
PilotMan
02-20-2018, 07:58 AM
This makes me smile today. Very good news
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