A Matter of Life or Death (a real life journal) - Page 5

Breeze · 08-23-2017, 03:47 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, 04:46 PM

Sorry to hear about this bad turn of events. Keep on fighting, Breeze. We're all rooting for you!

Breeze · 08-28-2017, 11:09 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, 11:43 AM

We're all pulling for you, Breeze. Sending good thoughts your way.

Breeze · 09-05-2017, 11:14 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, 11:58 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, 12:17 PM

Sending positive vibes and hoping this treatment is successful. All the best buddy!

Breeze · 09-05-2017, 02:51 PM

Quote:

Originally Posted by chesapeake

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, 08:18 PM

In my prayers. Keep fighting and kicking it's ass.

Breeze · 09-19-2017, 07:24 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, 12:59 PM

Praying for the same for you.

MIJB#19 · 09-25-2017, 03:33 PM

Just dropping by to wish you the best of luck in the process, Breeze.

Breeze · 10-23-2017, 08:47 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, 09:02 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, 09:57 AM

Best of luck for good results on your scans. Sending good thoughts your way.

hoopsguy · 10-24-2017, 06:33 AM

Good luck with the tests/results over the next few weeks.

Breeze · 11-01-2017, 06:46 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, 09:52 AM

Great to hear!

Breeze · 11-06-2017, 12:33 PM

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, 01:46 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, 10:46 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, 10:58 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, 11:09 AM

Woot.

PilotMan · 11-09-2017, 11:13 AM

That is awesome news. So happy you have that going into the holidays! Just awesome!

chesapeake · 11-09-2017, 01:57 PM

Very glad to see this great update.

Kodos · 11-09-2017, 02:52 PM

Awesome!

digamma · 11-10-2017, 07:37 AM

Late to this but great news!

CraigSca · 11-10-2017, 03:23 PM

Hurray! Great news! Have a great Holiday season with the fam!

Cap Ologist · 11-10-2017, 04:06 PM

Great news!

JAG · 11-10-2017, 09:39 PM

Fantastic news, very happy for you and the family.

BYU 14 · 11-11-2017, 07:18 AM

Awesome news, a great early Christmas present!!

hoopsguy · 11-11-2017, 03:53 PM

Congrats, great to hear.

Breeze · 01-22-2018, 05:14 AM

January 22, 2018

CT Scan time again. Saying my prayers for a good result.

MIJB#19 · 01-22-2018, 03:12 PM

Fingers crossed...

Breeze · 01-24-2018, 07:04 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, 11:09 AM

Keep it up!

PilotMan · 01-24-2018, 11:13 AM

That is fantastic news!

JAG · 01-25-2018, 05:15 AM

Excellent news.

chesapeake · 01-25-2018, 09:53 AM

Glad to see the good report.

Kodos · 01-25-2018, 11:19 AM

Great news!

MizzouRah · 01-25-2018, 08:53 PM

Great news indeed!

Breeze · 02-07-2018, 09:51 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, 09:33 PM

Quote:

Originally Posted by Breeze

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, 12:29 PM

February 19, 2018

I get the MRI results today...

BYU 14 · 02-19-2018, 01:01 PM

Quote:

Originally Posted by Breeze

February 19, 2018

I get the MRI results today...

Wishing all the best my friend, positive vibes your way!

Cap Ologist · 02-19-2018, 04:42 PM

Prayers for a good report!

Eaglesfan27 · 02-19-2018, 08:37 PM

Praying for good news!

PilotMan · 02-19-2018, 09:04 PM

Pulling for a great report!

Breeze · 02-20-2018, 06:53 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, 08:58 AM

This makes me smile today. Very good news

08-23-2017, 04:46 PM	#202
Kodos Resident Alien Join Date: Jun 2001	Sorry to hear about this bad turn of events. Keep on fighting, Breeze. We're all rooting for you! __________________ Author of The Bill Gates Challenge, as well as other groundbreaking dynasties.

08-28-2017, 11:43 AM	#204
Kodos Resident Alien Join Date: Jun 2001	We're all pulling for you, Breeze. Sending good thoughts your way. __________________ Author of The Bill Gates Challenge, as well as other groundbreaking dynasties.

09-19-2017, 07:24 AM	#210
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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. Last edited by Breeze : 09-20-2017 at 08:34 AM.

09-19-2017, 12:59 PM	#211
Eaglesfan27 Hall Of Famer Join Date: Nov 2002 Location: New Jersey	Praying for the same for you. __________________ Retired GM of the eNFL 2007 Super Bowl Champion Philadelphia Eagles (19-0 record.) GM of the WOOF 2006 Doggie Bowl Champion Atlantic City Gamblers. GM of the IHOF 2019 and 2022 IHOF Bowl Champion Asheville Axemen.

09-25-2017, 03:33 PM	#212
MIJB#19 Coordinator Join Date: Oct 2000 Location: Maassluis, Zuid-Holland, Netherlands	Just dropping by to wish you the best of luck in the process, Breeze. __________________ * 2005 Golden Scribe winner for best FOF Dynasty about IHOF's Maassluis Merchantmen * Former GM of GEFL's Houston Oilers and WOOF's Curacao Cocktail

08-23-2017, 03:47 PM	#201
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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.

08-28-2017, 11:09 AM	#203
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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.

09-05-2017, 11:14 AM	#205
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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.

09-05-2017, 11:58 AM	#206
chesapeake College Starter Join Date: Apr 2007 Location: Arlington, VA	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.

09-05-2017, 12:17 PM	#207
BYU 14 Coordinator Join Date: Jun 2002 Location: The scorched Desert	Sending positive vibes and hoping this treatment is successful. All the best buddy!

09-05-2017, 08:18 PM	#209
CU Tiger Grizzled Veteran Join Date: Nov 2006 Location: Backwoods, SC	In my prayers. Keep fighting and kicking it's ass.

10-23-2017, 08:47 AM	#213
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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.

10-23-2017, 09:02 AM	#214
PilotMan Head Coach Join Date: Oct 2002 Location: Seven miles up	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. __________________ He's just like if Snow White was competitive, horny, and capable of beating the shit out of anyone that called her Pops. Like Steam? Join the FOFC Steam group here: http://steamcommunity.com/groups/FOFConSteam

10-23-2017, 09:57 AM	#215
Kodos Resident Alien Join Date: Jun 2001	Best of luck for good results on your scans. Sending good thoughts your way. __________________ Author of The Bill Gates Challenge, as well as other groundbreaking dynasties.

10-24-2017, 06:33 AM	#216
hoopsguy General Manager Join Date: Oct 2000 Location: Chicago	Good luck with the tests/results over the next few weeks.

11-01-2017, 06:46 AM	#217
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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...

11-02-2017, 09:52 AM	#218
Kodos Resident Alien Join Date: Jun 2001	Great to hear! __________________ Author of The Bill Gates Challenge, as well as other groundbreaking dynasties.

11-06-2017, 12:33 PM	#219
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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.

11-06-2017, 01:46 PM	#220
PilotMan Head Coach Join Date: Oct 2002 Location: Seven miles up	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. __________________ He's just like if Snow White was competitive, horny, and capable of beating the shit out of anyone that called her Pops. Like Steam? Join the FOFC Steam group here: http://steamcommunity.com/groups/FOFConSteam

11-09-2017, 10:46 AM	#221
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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.

11-09-2017, 10:58 AM	#222
AnalBumCover College Starter Join Date: Nov 2002 Location: La Mirada, CA	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.

11-09-2017, 11:09 AM	#223
JonInMiddleGA Hall Of Famer Join Date: Nov 2000 Location: Behind Enemy Lines in Athens, GA	Woot. __________________ "I lit another cigarette. Unless I specifically inform you to the contrary, I am always lighting another cigarette." - from a novel by Martin Amis

11-09-2017, 11:13 AM	#224
PilotMan Head Coach Join Date: Oct 2002 Location: Seven miles up	That is awesome news. So happy you have that going into the holidays! Just awesome! __________________ He's just like if Snow White was competitive, horny, and capable of beating the shit out of anyone that called her Pops. Like Steam? Join the FOFC Steam group here: http://steamcommunity.com/groups/FOFConSteam

11-09-2017, 01:57 PM	#225
chesapeake College Starter Join Date: Apr 2007 Location: Arlington, VA	Very glad to see this great update.

11-09-2017, 02:52 PM	#226
Kodos Resident Alien Join Date: Jun 2001	Awesome! __________________ Author of The Bill Gates Challenge, as well as other groundbreaking dynasties.

11-10-2017, 07:37 AM	#227
digamma Torchbearer Join Date: Sep 2001 Location: On Lake Harriet	Late to this but great news!

11-10-2017, 03:23 PM	#228
CraigSca Pro Starter Join Date: Jul 2001 Location: Not Delaware - hurray!	Hurray! Great news! Have a great Holiday season with the fam! __________________ She loves you, yeah, yeah, yeah, yeah! She loves you, yeah! how do you know? how do you know?

11-10-2017, 04:06 PM	#229
Cap Ologist College Prospect Join Date: Nov 2003 Location: Flower Mound, TX	Great news!

11-10-2017, 09:39 PM	#230
JAG Grizzled Veteran Join Date: Nov 2000 Location: St. Paul, MN	Fantastic news, very happy for you and the family.

11-11-2017, 07:18 AM	#231
BYU 14 Coordinator Join Date: Jun 2002 Location: The scorched Desert	Awesome news, a great early Christmas present!!

11-11-2017, 03:53 PM	#232
hoopsguy General Manager Join Date: Oct 2000 Location: Chicago	Congrats, great to hear.

01-22-2018, 05:14 AM	#233
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	January 22, 2018 CT Scan time again. Saying my prayers for a good result. Last edited by Breeze : 01-23-2018 at 10:24 AM.

01-22-2018, 03:12 PM	#234
MIJB#19 Coordinator Join Date: Oct 2000 Location: Maassluis, Zuid-Holland, Netherlands	Fingers crossed... __________________ * 2005 Golden Scribe winner for best FOF Dynasty about IHOF's Maassluis Merchantmen * Former GM of GEFL's Houston Oilers and WOOF's Curacao Cocktail

01-24-2018, 07:04 AM	#235
Breeze Grizzled Veteran Join Date: Oct 2002 Location: Northern Suburbs of ATL	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.

01-24-2018, 11:09 AM	#236
digamma Torchbearer Join Date: Sep 2001 Location: On Lake Harriet	Keep it up!