I have Cancer :/ -- still doing well

[wiffleball 4,629]

For the love of God Jerry, do not talk to BeenHere. 

[Artista 460]

Good to hear chemo isn't terrible for you. Many question if they have to do the last one cuz it's so bad. I'm pretty sure it's because you continued doing your thing while some people expect to be sick and therefore become sickly. Best wishes for good news on your next scan!

[jerryskids 5,152]

1 hour ago, Artista said:

Good to hear chemo isn't terrible for you. Many question if they have to do the last one cuz it's so bad. I'm pretty sure it's because you continued doing your thing while some people expect to be sick and therefore become sickly. Best wishes for good news on your next scan!

Thanks.  I know it isn't rational but I'm disappointed I don't feel worse; my mind associates bad side effects with the chemo killing many cells in the body including the cancer.  If it isn't giving me mouth sores etc., is it attacking the cancer?  They say that there isn't a correlation, but "they" say a lot of things.

I continue to sense that the onc team seems satisfied with stable reports.  I constantly remind them that I want to be as aggressive as possible.  I'm not shooting for "satisfied" or "stable".  I'm shooting for "fock yeah man!" and "gone."   

[wiffleball 4,629]

4 minutes ago, jerryskids said:

Thanks.  I know it isn't rational but I'm disappointed I don't feel worse; my mind associates bad side effects with the chemo killing many cells in the body including the cancer.  If it isn't giving me mouth sores etc., is it attacking the cancer?  They say that there isn't a correlation, but "they" say a lot of things.

I continue to sense that the onc team seems satisfied with stable reports.  I constantly remind them that I want to be as aggressive as possible.  I'm not shooting for "satisfied" or "stable".  I'm shooting for "fock yeah man!" and "gone."   

Are you taking more holistic approach? Nutrition, diet, supplements Etc?

[Artista 460]

11 minutes ago, jerryskids said:

Thanks.  I know it isn't rational but I'm disappointed I don't feel worse; my mind associates bad side effects with the chemo killing many cells in the body including the cancer.  If it isn't giving me mouth sores etc., is it attacking the cancer?  They say that there isn't a correlation, but "they" say a lot of things.

I continue to sense that the onc team seems satisfied with stable reports.  I constantly remind them that I want to be as aggressive as possible.  I'm not shooting for "satisfied" or "stable".  I'm shooting for "fock yeah man!" and "gone."   

I get that but I found some people years out who didn't have terrible ses. I think part of it is the healthier you are going in the ses may not be so bad. 

[jerryskids 5,152]

17 minutes ago, wiffleball said:

Are you taking more holistic approach? Nutrition, diet, supplements Etc?

Yes:

- Nutrition -- doing keto.  It's not about weight loss, which is an unfortunate side effect in my situation.  But as mentioned above, my cancer in particular feeds on sugar, fairly exclusively if I recall.

- Cannabinoids -- yep, just posted about it

- Vitamins -- No, I stopped them when this started.  Most of the benefits are with respect to antioxidants, which are great in PREVENTING cancer but bad at CURING cancer because they help protect cancer cells like they do regular cells.  At least that's the prevailing guidance, and even on that note there is conflicting data:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6111235/

- Food supplements -- yeah, I need to eat a lot of fat and protein to even maintain weight, so I put collagen peptides in my coffee, and my wife makes a variety of protein shakes we affectionately call "fat bombs."  

Maybe I'm doing nothing or even making it worse, but I consider myself the smartest person in most rooms (actually a running joke I had with the ENT surgeon described back in October 1010), and it (1) continues to amaze me how little the industry knows about the influences of such factors, and (2) makes me feel like I'm doing something proactive.  I mean come on, we know squamous cell carcinoma loves sugar, does it seem unreasonable to deprive it of sugar?   

[wiffleball 4,629]

Look into probiotics. 

 

But what do I know

[jerryskids 5,152]

1 minute ago, wiffleball said:

Look into probiotics. 

 

But what do I know

I forget the deal with probiotics; I certainly believe in the power of healthy bacteria and the stomach biome system, but I forget if there was an issue like with the vitamin info above, and/or with supplements.  I'll have to look into it, thanks for the info. 

On that note, I suspect that system is much healthier now that I'm not drowning it in alcohol daily.  It's never too late to help yourself, wiff.   

[Artista 460]

14 hours ago, jerryskids said:

I forget the deal with probiotics; I certainly believe in the power of healthy bacteria and the stomach biome system, but I forget if there was an issue like with the vitamin info above, and/or with supplements.  I'll have to look into it, thanks for the info. 

On that note, I suspect that system is much healthier now that I'm not drowning it in alcohol daily.  It's never too late to help yourself, wiff.   

I took probiotics because chemo destroys the cells in your stomach lining. They are in the same category as hair. Helps with nausea too.

[tikigods 76]

Sorry I went fast-forward to the last page to make sure you were still alive and kicking. 

Have you blamed Obama yet? 

AlsoIHopeYouAreDoingBetter

 

[jerryskids 5,152]

6 hours ago, tikigods said:

Sorry I went fast-forward to the last page to make sure you were still alive and kicking. 

Have you blamed Obama yet? 

AlsoIHopeYouAreDoingBetter

 

Not dead yet!  Also I would never blame Obama for anything, that would be racist, do I look like a mouthbreather?  Well I'm not, literally, since I am a neck breather now.  

Also long time, hope all is well.   

[tikigods 76]

On 9/4/2021 at 3:57 PM, jerryskids said:

Not dead yet!  Also I would never blame Obama for anything, that would be racist, do I look like a mouthbreather?  Well I'm not, literally, since I am a neck breather now.  

Also long time, hope all is well.   

At least you can legally gamble now. Things are coming up Millhouse 

[jerryskids 5,152]

Drip drip drip... here for my last chemo!!!  Getting my happy juice now (Benadry). Got a new scan in 3 weeks, if it goes well (same or better) we'll continue the Keytruda, I'm approved for a year total by insurance.  Keytruda us already scheduled.

I asked the doc what are the decision criteria, he said the above, and if things get worse, he smiled reassuringly and said we would discuss options.  It must suck to have a job where you routinely tell people they are going to die.

Speaking of options, there is an mRNA cancer study which is extremely promising.

https://www.iflscience.com/health-and-medicine/biontech-mrna-cancer-treatment-moved-to-human-trials-after-huge-success-in-mice/

It's in phase 1/2 human trials.  Basically it works with immuno (similar to my Keytruda) but is only being tested on hail mary patients.  The actual study linked in the article says my particular cancer is being tested. I'm not there yet, but if I do get there ima ask the onc about jumping in.  I think I've mentioned he is tied in to the research community.

On the topic of first world problems, I forgot my iPad charger. Plan was to watch the Ryder Cup and more Breaking Bad.  I can try on my phone, but I don't have that charger either (by design, I didn't plan to use it that much). I have an older charger as does the hospital, but the new ones are different.  Apple's gonna Apple.

 

[fandandy 3,311]

44 minutes ago, jerryskids said:

On the topic of first world problems, I forgot my iPad charger. Plan was to watch the Ryder Cup and more Breaking Bad.  I can try on my phone, but I don't have that charger either (by design, I didn't plan to use it that much). I have an older charger as does the hospital, but the new ones are different.  Apple's gonna Apple.

 

Damn, I'm sorry to hear this, skids.

[Artista 460]

Congrats on your last chemo, and best wishes with the scans! Takes awhile for chemo to get out of your system so keep drinking up. That's great insurance approved Keytruda for a year. Usually it's a fight. 

[jerryskids 5,152]

14 hours ago, Artista said:

Congrats on your last chemo, and best wishes with the scans! Takes awhile for chemo to get out of your system so keep drinking up. That's great insurance approved Keytruda for a year. Usually it's a fight. 

Thanks.  I certainly plan to keep the hydration up regardless; I had been since this whole thing started (well, on the feeding tube I stuck lots of water in the tube).

There was a bit of a fight with insurance on Keytruda.  They initially only approved 4 treatments, and we had to go back for more.  I was expecting only a few more treatments to be approved, and was surprised they gave me the year.  They also complained about paying for a genetic test which... was what showed that Keytruda should be effective.  I think we are past that.

I'm at the point where if I'm explicitly asked for something, I'll contact them and say "hey, just checking, do you still need this?"  Because the notification comes by snail mail which is already slow, but with my house move and address changes has been somewhat outdated info.  If I'm not explicitly asked and it is just a notification, I presume it is handled unless I get a bill, which has yet to happen.

The bigger battle is going to be over my long term disability.

[Artista 460]

3 hours ago, jerryskids said:

Thanks.  I certainly plan to keep the hydration up regardless; I had been since this whole thing started (well, on the feeding tube I stuck lots of water in the tube).

There was a bit of a fight with insurance on Keytruda.  They initially only approved 4 treatments, and we had to go back for more.  I was expecting only a few more treatments to be approved, and was surprised they gave me the year.  They also complained about paying for a genetic test which... was what showed that Keytruda should be effective.  I think we are past that.

I'm at the point where if I'm explicitly asked for something, I'll contact them and say "hey, just checking, do you still need this?"  Because the notification comes by snail mail which is already slow, but with my house move and address changes has been somewhat outdated info.  If I'm not explicitly asked and it is just a notification, I presume it is handled unless I get a bill, which has yet to happen.

The bigger battle is going to be over my long term disability.

Have you tried applying for SSDI?

[jerryskids 5,152]

2 hours ago, Artista said:

Have you tried applying for SSDI?

Not yet but I plan to look into it.  My finance guy thinks I would have a good chance but he isn't an expert.

[Artista 460]

5 hours ago, jerryskids said:

Not yet but I plan to look into it.  My finance guy thinks I would have a good chance but he isn't an expert.

I think you do. If you aren't approved off the bat then you can lawyer up or go in front of a judge. I know cancer patients who got it. Just need to persist. It pays higher than Social Security and you get Medicare. When you reach 67 or whatever the age is for your year of birth, they'll move you to SS but with your SSDI amount. SSDI basically is min of 1 year no way can you work. And it could go retroactive for backpay. You just need very detailed good notes from your docs.

Once approved they'll do a review from time to time for your latest status. Some get it every year, 3 years, 5, 7 or never. They can tell you once you get your letter of approval. 

[jerryskids 5,152]

11 hours ago, Artista said:

I think you do. If you aren't approved off the bat then you can lawyer up or go in front of a judge. I know cancer patients who got it. Just need to persist. It pays higher than Social Security and you get Medicare. When you reach 67 or whatever the age is for your year of birth, they'll move you to SS but with your SSDI amount. SSDI basically is min of 1 year no way can you work. And it could go retroactive for backpay. You just need very detailed good notes from your docs.

Once approved they'll do a review from time to time for your latest status. Some get it every year, 3 years, 5, 7 or never. They can tell you once you get your letter of approval. 

Thanks for the info, I appreciate it.  Looking at the online site, the good news is that on paper I should qualify.  The bad news is that I qualify because my life expectancy is low.  So I've got that going for me.

[Artista 460]

3 hours ago, jerryskids said:

Thanks for the info, I appreciate it.  Looking at the online site, the good news is that on paper I should qualify.  The bad news is that I qualify because my life expectancy is low.  So I've got that going for me.

You have over a year of medical records. Send it all even if it doesn't look like much info on the document. 

[wiffleball 4,629]

Hang tough. But cry, scream, shout if you need to. Got a hell of a lot of people pulling for you. They'll understand more than you can hope or  imagine.

[tikigods 76]

I finally read the whole thread. 

You are one brave mfker 

[jerryskids 5,152]

7 hours ago, tikigods said:

I finally read the whole thread. 

You are one brave mfker 

Thanks.  I've been more honest with the board than with most folks IRL it seems.  I just posted on FB about my last chemo; my brother texted me this morning something like "I thought you were done with the lung stuff?"  I've played up the good results from the last scan; if I were being honest I'd have said "well at least this scan was pretty good so it probably will be a little while before it kills me."  Which statistically is the likely outcome.  

Nevertheless I'm choosing to live my life like I'll be around for a while, and I don't really want my brother staring at me wondering if I'm going to die that day, I'd rather kick his ass golfing and give him a hard time about it.   

Also I'll be plenty nervous in the days leading up to the next scan, but honestly at this point I'm somewhat confident that I'll get decent to good results this time as well.   

[tikigods 76]

6 hours ago, jerryskids said:

Thanks.  I've been more honest with the board than with most folks IRL it seems.  I just posted on FB about my last chemo; my brother texted me this morning something like "I thought you were done with the lung stuff?"  I've played up the good results from the last scan; if I were being honest I'd have said "well at least this scan was pretty good so it probably will be a little while before it kills me."  Which statistically is the likely outcome.  

Nevertheless I'm choosing to live my life like I'll be around for a while, and I don't really want my brother staring at me wondering if I'm going to die that day, I'd rather kick his ass golfing and give him a hard time about it.   

Also I'll be plenty nervous in the days leading up to the next scan, but honestly at this point I'm somewhat confident that I'll get decent to good results this time as well.   

I’m sorry this happening to you. You’re doing a good job putting on a brave face and trying to focus on the wins. 

You’ve always been a good person to people on the board. Prayers to your health.

[jerryskids 5,152]

Drip drip drip… had my first infusion post-chemo, so we did Keytruda only, which is only 30 minutes.  So I didn’t have time to update here.  More importantly… the scan results were good and similar as before:  two of the three gone, the third stable.  Possibly extremely good, which I’ll explain:

TL;DR — it’s possible that the remaining tumor isn’t really a tumor, based on my internet expert analysis.

The initial metastatic tumor in my lung was found by a PET scan and confirmed with a biopsy, let’s call that Tumor A.  Understandably, they wanted a biopsy to confirm it was cancer before putting me through chemo.  A follow up CT scan found two other tumors deemed “too small” to show on the PET scan, but those were never biopsied, let’s call those B and C.  In my next (July) scan two of the three were gone and the other was deemed stable.  This latest scan had the exact same result.  

I had thought back in July that the biggest one, Tumor A, was the one still around, albeit smaller.  But today I went back over the past results and it appears that the largest one was one of the two gone.  Tumor C is still around and has measured within 1-2 mm difference on the 3 CT scans.

What does that mean?  Well, only A was biopsied.  So the largest (A) and one of the smaller (B) have been gone since July, but C is still around and basically the same size.  Since they are presumably all metastasized from the same cancer, they should all have the same genetic makeup (here I play a doctor) so presumably would have similar reactions to the treatments.  It therefore seems odd to me that C is sticking around unchanged.

Far be it from me to question the work of radiologists (OK I lie), but at the end of the day they are looking at black and white photos and making calls on what different blobs are.  The PET scan lights up blobs from high sugar consumption; only A lit up from that.  A CT scan uses a different mechanism but is higher detailed.  I actually asked a while back about the discrepancy and the answer was “the other two were too small to be seen in the PET but not in the CT,” but… not seen at all?  They are still eating sugar, right?  

An Occam’s Razor explanation for all of this is that C is not cancer, or technically some little blob that didn’t come from the mother blob.  Tumor A did (biopsy), B is unknown (who cares, it is gone).  So I may have no active tumors in me.

These are the exercises I go through to maintain my positive attitude.   

End TL;DR

Back to reality:  it is probably still cancer and just “stable.”  But even if I am better at oncology and radiology than the highly trained pros who do this for a living, the cancer is presumably still in my body, maybe not formed into an identifiable tumor but lurking around, waiting like Michael Myers on Halloween to come out and wreak more havoc.  And with current technology it will likely still kill me, although I may hold on longer than many.  So we’ll stick with the Keytruda every 3 weeks and I’ll get my next scan in mid January.  I’ll be interested to see how that scan goes on Keytruda-only.

But like I said I’m an optimist so I’m in a hella good mood right now.   

 

[wiffleball 4,629]

Its not a Toomah! 

 

Thanks for the update. 

 

 

Congrats on the anniversary and the good news. You rock.

[5-Points 2,715]

29 minutes ago, jerryskids said:

Drip drip drip… had my first infusion post-chemo, so we did Keytruda only, which is only 30 minutes.  So I didn’t have time to update here.  More importantly… the scan results were good and similar as before:  two of the three gone, the third stable.  Possibly extremely good, which I’ll explain:

TL;DR — it’s possible that the remaining tumor isn’t really a tumor, based on my internet expert analysis.

The initial metastatic tumor in my lung was found by a PET scan and confirmed with a biopsy, let’s call that Tumor A.  Understandably, they wanted a biopsy to confirm it was cancer before putting me through chemo.  A follow up CT scan found two other tumors deemed “too small” to show on the PET scan, but those were never biopsied, let’s call those B and C.  In my next (July) scan two of the three were gone and the other was deemed stable.  This latest scan had the exact same result.  

I had thought back in July that the biggest one, Tumor A, was the one still around, albeit smaller.  But today I went back over the past results and it appears that the largest one was one of the two gone.  Tumor C is still around and has measured within 1-2 mm difference on the 3 CT scans.

What does that mean?  Well, only A was biopsied.  So the largest (A) and one of the smaller (B) have been gone since July, but C is still around and basically the same size.  Since they are presumably all metastasized from the same cancer, they should all have the same genetic makeup (here I play a doctor) so presumably would have similar reactions to the treatments.  It therefore seems odd to me that C is sticking around unchanged.

Far be it from me to question the work of radiologists (OK I lie), but at the end of the day they are looking at black and white photos and making calls on what different blobs are.  The PET scan lights up blobs from high sugar consumption; only A lit up from that.  A CT scan uses a different mechanism but is higher detailed.  I actually asked a while back about the discrepancy and the answer was “the other two were too small to be seen in the PET but not in the CT,” but… not seen at all?  They are still eating sugar, right?  

An Occam’s Razor explanation for all of this is that C is not cancer, or technically some little blob that didn’t come from the mother blob.  Tumor A did (biopsy), B is unknown (who cares, it is gone).  So I may have no active tumors in me.

These are the exercises I go through to maintain my positive attitude.   

End TL;DR

Back to reality:  it is probably still cancer and just “stable.”  But even if I am better at oncology and radiology than the highly trained pros who do this for a living, the cancer is presumably still in my body, maybe not formed into an identifiable tumor but lurking around, waiting like Michael Myers on Halloween to come out and wreak more havoc.  And with current technology it will likely still kill me, although I may hold on longer than many.  So we’ll stick with the Keytruda every 3 weeks and I’ll get my next scan in mid January.  I’ll be interested to see how that scan goes on Keytruda-only.

But like I said I’m an optimist so I’m in a hella good mood right now.   

 

Keep kickin it's ass Jerry! 

 

[DonS 3,063]

Fock cancer. Fock it in the stupid ass. You got this. 

[Voltaire 4,550]

How do you feel phyiscally compared to pre-cancer? What I'm getting at specifically, when I saw you mention golfing, I statred wondering if you are still capable of doing the hiking and the judo at similar levels as you were doing before or has this drained some amount of energy from you that makes it hard?

[Artista 460]

Glad to read the scans look good. Yowza, that's some serious analysis! Bet they don't get that often. I didn't analyze like you but I had researched a whole lot more than others around me that my docs were impressed. 

 I know when they found suspicious nodules that couldn't be biopsied in my lungs, I had CT scans 2 or maybe 3x a year (can't remember now) for 2 years. No change = all clear at 2 years. Continued best wishes to you!

[jerryskids 5,152]

17 hours ago, Voltaire said:

How do you feel phyiscally compared to pre-cancer? What I'm getting at specifically, when I saw you mention golfing, I statred wondering if you are still capable of doing the hiking and the judo at similar levels as you were doing before or has this drained some amount of energy from you that makes it hard?

Physically I’m not what I was, and may never quite be, at least from the surgery.  That gave me a laryngectomy which makes me breathe through a hole in my neck, which alters my breathing and general ability to get max oxygen for hard cardio work.  Although, I was training and in shape to do the 4.2 mile Pat’s Run (Pat Tillman foundation charity) in April, but I got floored by vertigo.  So maybe that isn’t a huge limiter.  The bigger surgical issue was when they sliced my left pec mostly off and jammed it into my throat for reconstruction.  I used to be able to do workouts with 200 pushups; now I can’t do one (well, maybe I could but it would be ugly).  I can do elevated (angled) pushups, and I have bands which I use.  I need to do do that, as well as flexibility exercises, more than I do. 

Chemo in May just added to the fun.  While I handled it well, it takes a lot out of you.  My focus shifted from “working to get close to pre-cancer fitness” to “just try to keep generally active.”  

I’ve been doing the hiking, but shorter distances and (much) lower inclines.  I’m lucky that the part of the mountain I just moved by has lots of trail options.  I do want to work towards a trip to Utah in the spring to Zion and maybe some other parks. 

The martial arts, I had retired long before the cancer.  I had toyed with getting into Jiu jitsu (grappling style) which I know I would enjoy, plus my son does it.  But with my above physical limitations I can’t do it.

[jerryskids 5,152]

14 hours ago, Artista said:

Glad to read the scans look good. Yowza, that's some serious analysis! Bet they don't get that often. I didn't analyze like you but I had researched a whole lot more than others around me that my docs were impressed. 

 I know when they found suspicious nodules that couldn't be biopsied in my lungs, I had CT scans 2 or maybe 3x a year (can't remember now) for 2 years. No change = all clear at 2 years. Continued best wishes to you!

Thanks.  I got the actual reports this morning, and I misspoke when I called them tumors: the report calls them “nodules” like you did.  So I suspect that I will be on a plan like you described, and in a few years if nothing changes they may say “eh, guess that wasn’t cancer after all.”  The best thing about it was that I thought the remaining nodule was (a reduced version of) the initial tumor which was biopsied, but it isn’t.

[jerryskids 5,152]

Had my quarterly scans last week.  I'm due for an update anyway so here goes:

TL;dr -- Scans are good/stable.  Tummy is upset and one blood cell count is bad, probably both due to immunotherapy and, oddly, both may be a good sign that it's working.

Long version:

Last week was scan week; 11 out of 12 weeks I live in somewhat blissful ignorance that I may be dying, then the 12th week I stress out about the upcoming scans.  Tuesday of that week I also noticed some additional GI challenges.  In hindsight things haven't exactly been great in that department but something seemed... a little different, enough that I noticed.  A little more nausea than I've had, even during chemo.  It would come and go around noon, last maybe an hour or two.  I tried to correlate it to food intake but wasn't successful.  Bloodwork and scans were Thursday, with doctor visit Friday.  They don't post the scan results right away but they do the bloodwork, and as I looked through it I noticed a reading out of whack:  something called eosinophils was 3X out of range, in the past it was always well in range.  Nobody is really sure what they do but they are made in the bone marrow and can indicate various problems, like certain fungal infections (prolly not in my case) or blood cancers...  umm, might it have spread to my blood?  A further study I found discussed two people on Keytruda who had high measurements; again they didn't know why but in the end they took them off of Keytruda.  Also not a great option, as the treatment seems to be working.

So we head to the the doctor visit Friday.  Doc walks in all happy, shows the scan results, they are good again.  One little 4mm cyst/whatever that they see every time and never changes, otherwise all clear.  I was not to be deterred from being Eeyore though and said "but Doc, what about my Eosinophils?!"

Basically he said it's probably nothing, stop worrying, did I mention your scans are great you blithering idiot?  We'll watch them and see how it goes.

It did seem wrong to not be happy with those scans, but I just couldn't shake this eosinophil thing.  Until Saturday, when my wife googled around.  She is better at searching than I am, and she found two interesting studies.  One showed that it was eventually discovered that high readings are quite common in Keytruda patients; 22% in a large study.  And those with higher readings tended to have better outcomes (i.e., lived longer).  A second analysis showed that side effects like my GI issues (also not uncommon) are correlated to efficacy, double bonus!

So Saturday morning we finally exhaled (metaphorically) and hugged each other that things were looking good.   

[DonS 3,063]

great news! 

[Strike 3,934]

Thanks for the update.  Glad things look good

[GobbleDog 815]

Tell your doctor you want a pig blood transplant.

[wiffleball 4,629]

32 minutes ago, GobbleDog said:

Tell your doctor you want a pig blood transplant.

Just go down on a menstruating Roseanne. 

[Thornton Melon 542]

  Good to hear, jerry. But come on, you and your wife did more than just hug each other, right? 

[Artista 460]

Great news, great start to the new year!