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Old 09-21-2016, 05:20 PM   #1
Breeze
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Join Date: Oct 2002
Location: Northern Suburbs of ATL
A Matter of Life or Death (a real life journal)

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.

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Old 09-21-2016, 05:24 PM   #2
Breeze
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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.
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Old 09-21-2016, 05:36 PM   #3
Breeze
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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)
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Old 09-21-2016, 07:09 PM   #4
nilodor
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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.
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Old 09-21-2016, 09:30 PM   #5
Breeze
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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...
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Old 09-21-2016, 09:44 PM   #6
Breeze
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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.
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Old 09-21-2016, 11:15 PM   #7
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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.
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Old 09-23-2016, 07:35 AM   #8
Breeze
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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....
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Old 09-23-2016, 07:36 AM   #9
Breeze
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August 25, 2016

Most of the day was spent draining the lung. Some tests were run, but nothing definitive was determined...
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Old 09-23-2016, 07:43 AM   #10
Breeze
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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.
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Old 09-23-2016, 08:04 AM   #11
Breeze
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~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).

Last edited by Breeze : 11-08-2016 at 05:13 PM.
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Old 09-23-2016, 08:41 AM   #12
Breeze
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~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.
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Old 09-23-2016, 08:52 AM   #13
Breeze
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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.
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Old 09-23-2016, 09:28 AM   #14
Breeze
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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.


---------------------------------------------------------------------

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.

Last edited by Breeze : 09-23-2016 at 09:30 AM.
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Old 09-23-2016, 11:29 AM   #15
Breeze
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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.
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Old 09-23-2016, 12:00 PM   #16
Breeze
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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).

Last edited by Breeze : 11-08-2016 at 05:17 PM.
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Old 09-26-2016, 09:48 AM   #17
Breeze
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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.
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Old 09-26-2016, 10:45 AM   #18
CraigSca
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Thoughts and prayers with you and your family. Rooting for you from Florida. I hope journaling like this is therapeutic for you.
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Old 09-26-2016, 11:54 AM   #19
Breeze
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Thoughts and prayers with you and your family. Rooting for you from Florida. I hope journaling like this is therapeutic for you.

Thanks Craig...
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Old 09-26-2016, 12:10 PM   #20
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All my best. Will be reading.
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Old 09-26-2016, 01:52 PM   #21
Breeze
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All my best. Will be reading.

Thanks Digamma...I appreciate all the support.
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Old 09-26-2016, 02:28 PM   #22
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Thoughts, PRayers, virtual hugs and I will be reading..
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Old 09-28-2016, 08:44 AM   #23
Breeze
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Thoughts, PRayers, virtual hugs and I will be reading..

Thanks MG...
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Old 09-28-2016, 08:49 AM   #24
Breeze
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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.
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Old 09-28-2016, 03:25 PM   #25
CraigSca
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Will you hear back today?
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Old 09-29-2016, 10:59 AM   #26
Breeze
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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.

Last edited by Breeze : 09-29-2016 at 11:03 AM.
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Old 09-29-2016, 12:05 PM   #27
CraigSca
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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!
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Old 09-29-2016, 06:25 PM   #28
Breeze
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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...
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Old 09-29-2016, 10:06 PM   #29
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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!!
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Old 10-03-2016, 09:42 AM   #30
Breeze
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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...
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Old 10-03-2016, 09:46 AM   #31
Breeze
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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).
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Old 10-03-2016, 04:36 PM   #32
Icy
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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.
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Old 10-04-2016, 11:50 AM   #33
Breeze
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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.

Last edited by Breeze : 10-04-2016 at 11:50 AM.
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Old 10-06-2016, 09:36 AM   #34
Breeze
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Location: Northern Suburbs of ATL
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 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.

Last edited by Breeze : 10-06-2016 at 11:24 AM.
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Old 10-06-2016, 11:21 AM   #35
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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.
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Old 10-06-2016, 01:25 PM   #36
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I'm here and hoping for the best for you, Breeze.
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Old 10-06-2016, 11:25 PM   #37
hoopsguy
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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?
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Old 10-07-2016, 08:56 AM   #38
Breeze
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Originally Posted by hoopsguy View Post
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.
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Old 10-07-2016, 08:56 AM   #39
Breeze
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I'm here and hoping for the best for you, Breeze.

Hey Kodos, thank you...
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Old 10-07-2016, 09:07 AM   #40
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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.
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Old 10-07-2016, 11:29 AM   #41
Breeze
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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...
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Old 10-10-2016, 11:14 AM   #42
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October 10, 2016

Finally have my appointment scheduled. I'll go in to start treatment on Wednesday at 10 A.M.
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Old 10-10-2016, 04:15 PM   #43
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Location: Not Delaware - hurray!
Good. Wishing you the best with this new therapy.
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Old 10-12-2016, 05:05 AM   #44
Breeze
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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.
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Old 10-12-2016, 07:49 AM   #45
Northwood_DK
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Also reading and pulling for you.

Hope you get the answers you want today.
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Old 10-12-2016, 11:53 AM   #46
heybrad
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You're in my prayers Breeze. Stay strong.
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Old 10-12-2016, 01:42 PM   #47
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Praying for the desired outcome
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Old 10-12-2016, 01:48 PM   #48
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Praying for you!
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Old 10-13-2016, 11:09 AM   #49
Breeze
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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.

Last edited by Breeze : 11-08-2016 at 05:23 PM.
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Old 10-13-2016, 03:31 PM   #50
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Here's hoping your body reacts well to the Xalkori, Breeze.
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