I have Cancer :/ -- still doing well

[Voltaire 4,560]

Add me to the list of  for the good news, jerry.

[RaiderHaters Revenge 3,585]

Awesome Jerry. Meant to follow up with you. Let me know if there is anything else I can do to help you out brother

[jerryskids 5,206]

1 hour ago, RaiderHaters Revenge said:

Awesome Jerry. Meant to follow up with you. Let me know if there is anything else I can do to help you out brother

Appreciate it man, you’ve been very helpful.  I’ll follow up on PM.  

 

[Hardcore troubadour 12,653]

Great news.

[MDC 5,892]

On 7/21/2021 at 11:06 PM, jerryskids said:

Thanks all. The scan results are… good!  There were 3 nodules back in early April:  11, 4, and 6mm.  The 4 and 6mm are now gone, at least to the extent a CT can see it.  The 11mm was classified as “stable.”  Since the treatments started 6+ weeks after the previous scan, I’m thinking it had gotten larger in that time, so the current “stable” is actually a reduction in size.  Regardless, the doctor was quite happy with the results, which indicate that the treatments are working.

I need to keep in mind that “working” means somewhere between “managing” and “reducing” but most likely not “completely eliminating.”  I’m not sure they’ll ever give me that status.  And I’ll have fear every time I get a scan.  But for now, I am not on the “6 months to live” list.

I did have a very low white blood cell count, so they are skipping chemo this round (tomorrow) and just doing the immunotherapy.  In three weeks we’ll go back to both, as it appears to be working.

It’s typical to remember the bad news and forget the good, and I’ve certainly had small victories in this journey, but I think this is the first major good news I’ve gotten.  

Real glad to hear it.  

[kutulu 1,548]

On 7/22/2021 at 11:42 AM, kutulu said:

Can't wait to celebrate the good news with your wife 

Just to close this loop, she was really excited 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[naomi 343]

Great to hear this! 

[Old School 360]

Positive news is good. 

[WhiteWonder 2,172]

glad to hear the good news 

[jerryskids 5,206]

Drip, drip, drip… here for my, umm, 5th infusion?  Or is it 4?  We skipped the chemo last time because my neutrophil count (immune cells which fight infection) was low.  This is the 5th immuno, 4th chemo.  BTW @Artista, I mentioned Neulasta to battle the white blood cell problem with the doctor and I am getting it today, so thank you very much.  On the one hand I’m glad but on the other I’m wondering why I needed to come up with this solution.   

I also started a stricter keto diet today.  It is well-established that the type of cancer I have (squamous cell carcinoma) loves to eat sugar for energy.  I was going to wait until all of the chemos were done, to try to maintain weight easier, but I read something yesterday that showed benefit to keto during actual treatments so I said Fock it, no time like the present.  Things like this I can control, and even being Mayo I’m continuously amazed at the lack of knowledge regarding nutrition.  I really want to kill this shiot, not just be “stable.”

On a related note, the timing of this worked out well, as we close on our house next Thursday (movers deliver stuff Friday) and I should be in pretty good shape to sit there and tell people where to put things.  This weekend we’ll just relax as there isn’t much we could do anyway.   

[Bier Meister 1,514]

[Bert 1,091]

[wiffleball 4,643]

Thumbs up to Jerry having the Cancer? You guys are Diicks!

 

Jk

[jerryskids 5,206]

21 minutes ago, wiffleball said:

Thumbs up to Jerry having the Cancer? You guys are Diicks!

 

Jk

It's 5 oclock somewhere.  Thanks and enjoy!   

ETA:  I just realized that the east coast was already past 5 when I posted this.  

[OldMaid 1,838]

Awesome news, Jerry. I’ve been scared to check in here for fear of bad news.  Never been happier to be wrong.  

[jerryskids 5,206]

4 minutes ago, OldMaid said:

Awesome news, Jerry. I’ve been scared to check in here for fear of bad news.  Never been happier to be wrong.  

Thanks! Most of our efforts this week revolved around working with insurance companies; the main thing was health (BCBS) which seems to like to slow play approvals for my immuno (Keytruda).  Near as I can tell I've got a blank check with chemo, but that will eventually end and Keytruda can be taken for years safely and effectively.  Today's infusion wasn't scheduled until yesterday (similar for Covid test, blood work, and pre-infusion meeting w/PA)  I really, really did not want another week (3 days at least) wait associated with pushing this out until next week.

I also learned today, or perhaps more inferred from the PA, that there is theoretically no physical limit to the number of chemo treatments I could safely get, if I'm tolerating them well enough.  Earlier statements from the doc made me think that 6 total was the limit, practical limit anyway, by which time my body would likely be a mess.  Knock on wood that hasn't been the case yet.  So perhaps the full infusions extend into Q4?  Like I said, let's just git 'er done this time arounds!  

[Frozenbeernuts 1,652]

Keep the good news coming Jerry

[wiffleball 4,643]

1 hour ago, OldMaid said:

Awesome news, Jerry. I’ve been scared to check in here for fear of bad news.  Never been happier to be wrong.  

.. which is weird, because you do it so much.

[Boots11234 107]

Jerry been following your story. Sorry brah. You mentioned nutrition and keto. I’ve done extensive reading on cancer and diet as I wanted to learn more about fasting and keto. I’m no dr but agree about going keto. Cancer needs two things, glucose and protein to live.  A PET scan is just a scan looking for areas that have high concentrations of sugar as cancer loves sugar. Do a search on fasting and chemo. I read a 36 hour fast before treatment makes it much more tolerable. Also Jason Fung has a fairly new book out about cancer, diet and fasting. He’s a huge proponent of fasting for type 2 diabetes cure. Good luck. 

[wiffleball 4,643]

Fasting ultimately pretty much cures everything. Of course, so does holding your breath for like 5 minutes.

[Boots11234 107]

1 minute ago, wiffleball said:

Fast and pretty much cures everything. Of course, so does holding your breath for like 5 minutes.

Being a douche doesn’t however. Now go gargle some gasoline while smoking. 

[wiffleball 4,643]

6 minutes ago, Boots11234 said:

Cancer needs two things, glucose and protein to live.  

You'll have to cut out candy and sperm from your diet. 

[wiffleball 4,643]

2 minutes ago, Boots11234 said:

Being a douche doesn’t however. Now go gargle some gasoline while smoking. 

Smoking is a carcinogen. 

 

Geez, you're a horrible doctor.

[OldMaid 1,838]

25 minutes ago, wiffleball said:

.. which is weird, because you do it so much.

And yet I agree with so much you say.

[OldMaid 1,838]

1 hour ago, jerryskids said:

Thanks! Most of our efforts this week revolved around working with insurance companies; the main thing was health (BCBS) which seems to like to slow play approvals for my immuno (Keytruda).  Near as I can tell I've got a blank check with chemo, but that will eventually end and Keytruda can be taken for years safely and effectively.  Today's infusion wasn't scheduled until yesterday (similar for Covid test, blood work, and pre-infusion meeting w/PA)  I really, really did not want another week (3 days at least) wait associated with pushing this out until next week.

I also learned today, or perhaps more inferred from the PA, that there is theoretically no physical limit to the number of chemo treatments I could safely get, if I'm tolerating them well enough.  Earlier statements from the doc made me think that 6 total was the limit, practical limit anyway, by which time my body would likely be a mess.  Knock on wood that hasn't been the case yet.  So perhaps the full infusions extend into Q4?  Like I said, let's just git 'er done this time arounds!  

Keep fighting the fight! Your positive attitude about the whole thing is amazing as well. Hopefully, you’ll be cancer free soon!

[jerryskids 5,206]

17 minutes ago, Boots11234 said:

Jerry been following your story. Sorry brah. You mentioned nutrition and keto. I’ve done extensive reading on cancer and diet as I wanted to learn more about fasting and keto. I’m no dr but agree about going keto. Cancer needs two things, glucose and protein to live.  A PET scan is just a scan looking for areas that have high concentrations of sugar as cancer loves sugar. Do a search on fasting and chemo. I read a 36 hour fast before treatment makes it much more tolerable. Also Jason Fung has a fairly new book out about cancer, diet and fasting. He’s a huge proponent of fasting for type 2 diabetes cure. Good luck. 

Thanks, I'll check out that book.  Intermittent fasting is fairly popular now; interestingly, the doctor/blogger who turned us onto it years ago is losing his mojo for it, but others are certainly picking it up and advocating.  Several times in the article they alluded to Keto "providing many/most of the benefits of fasting while largely maintaining weight.  As @wiffleball mentioned, people have noticed significant cancer improvement from starvation, but that has a practical limitation.  

[Boots11234 107]

10 minutes ago, jerryskids said:

Thanks, I'll check out that book.  Intermittent fasting is fairly popular now; interestingly, the doctor/blogger who turned us onto it years ago is losing his mojo for it, but others are certainly picking it up and advocating.  Several times in the article they alluded to Keto "providing many/most of the benefits of fasting while largely maintaining weight.  As @wiffleball mentioned, people have noticed significant cancer improvement from starvation, but that has a practical limitation.  

I’ve done 7 day fasts in the past and do IM as well as a 48 hour fast every week. Follow keto, OMAD and have lost 43 pounds IN 5 months. Feel great. 

[Voltaire 4,560]

Sonantic gives Val Kilmer AI voice after battle with throat cancer - The Washington Post

It seems as if Val Kilmer has the same sort of cancer you do, Jerry. I didn't know that. What's interesting is that because of his voice being recorded during his movie career, technological breakthroughs have allowed him to get it back. I don't suppose that you have old recordings of yourself Jerry of, if not, know of an actor that sounds similar?

i have to say the recording sounds pretty damn good. Were I not listening so closely, I may not have heard any polished editing sounds. They're like 99.5% there. This is the upside of deep fake technology.

[wiffleball 4,643]

3 hours ago, Voltaire said:

Sonantic gives Val Kilmer AI voice after battle with throat cancer - The Washington Post

It seems as if Val Kilmer has the same sort of cancer you do, Jerry. I didn't know that. What's interesting is that because of his voice being recorded during his movie career, technological breakthroughs have allowed him to get it back. I don't suppose that you have old recordings of yourself Jerry of, if not, know of an actor that sounds similar?

i have to say the recording sounds pretty damn good. Were I not listening so closely, I may not have heard any polished editing sounds. They're like 99.5% there. This is the upside of deep fake technology.

Dude, you should totally do James Earl Jones!!

[jerryskids 5,206]

2 hours ago, Voltaire said:

Sonantic gives Val Kilmer AI voice after battle with throat cancer - The Washington Post

It seems as if Val Kilmer has the same sort of cancer you do, Jerry. I didn't know that. What's interesting is that because of his voice being recorded during his movie career, technological breakthroughs have allowed him to get it back. I don't suppose that you have old recordings of yourself Jerry of, if not, know of an actor that sounds similar?

i have to say the recording sounds pretty damn good. Were I not listening so closely, I may not have heard any polished editing sounds. They're like 99.5% there. This is the upside of deep fake technology.

Wow, thank you so much Voltaire!  Yes, I was aware that Kilmer had had a laryngectomy; in fact I had seen pictures of him wearing the same HME (heat moisture exchanger) device as I do.  I was not aware of the documentary they mentioned, but I will definitely watch that. And I was not aware of this technology.

Seems like this is text-to-talk on steroids.  Back before the surgery, I made videos for each of my wife and 3 kids, each about 2 minutes.  I wanted them to have a last message from me in my "original" voice.  At the time in the back of my mind I thought "hmm, I wonder if I should record more, just in case it is useful some day.  But I didn't know what to do and punted on that idea.  In hindsight that probably wasn't smart, I could have at least read a book or something. 

This is possibly an important step in my idea of recreating my voice as I actually speak it.  "Speak" could mean a lot of things, but probably involves moving my mouth to form words.  Off the top of my head, perhaps a detailed model of the inner workings of my mouth which understands how I move things to generate the differ sounds of speech.  Think percussive sounds initially, in fact the word "percussive" is a good one:  p, k, s, v, all distinct mouth motions and sounds.  Then something senses those movements and passes my AI voice through them to generate the appropriate sounds.

Anyway, thanks again! 

 

[jerryskids 5,206]

6 minutes ago, wiffleball said:

Dude, you should totally do James Earl Jones!!

Well, I already sound more like him than anyone else...

I was just going to add something to my response to Voltaire but I'll do it here:  I showed the article to my wife and she pointed out that from an improved communication perspective, the voice doesn't need to be exactly mine.  Which led me to saying that I could use the voice of a hunky actor who makes her horny.   

[wiffleball 4,643]

4 minutes ago, jerryskids said:

Well, I already sound more like him than anyone else...

I was just going to add something to my response to Voltaire but I'll do it here:  I showed the article to my wife and she pointed out that from an improved communication perspective, the voice doesn't need to be exactly mine.  Which led me to saying that I could use the voice of a hunky actor who makes her horny.   

I understand that Cumberbund Dumblebiitch or something like that is like the prime voice to have right now.  

 

You could be Smaug! 

[Voltaire 4,560]

30 minutes ago, jerryskids said:

Wow, thank you so much Voltaire!  Yes, I was aware that Kilmer had had a laryngectomy; in fact I had seen pictures of him wearing the same HME (heat moisture exchanger) device as I do.  I was not aware of the documentary they mentioned, but I will definitely watch that. And I was not aware of this technology.

Seems like this is text-to-talk on steroids.  Back before the surgery, I made videos for each of my wife and 3 kids, each about 2 minutes.  I wanted them to have a last message from me in my "original" voice.  At the time in the back of my mind I thought "hmm, I wonder if I should record more, just in case it is useful some day.  But I didn't know what to do and punted on that idea.  In hindsight that probably wasn't smart, I could have at least read a book or something. 

This is possibly an important step in my idea of recreating my voice as I actually speak it.  "Speak" could mean a lot of things, but probably involves moving my mouth to form words.  Off the top of my head, perhaps a detailed model of the inner workings of my mouth which understands how I move things to generate the differ sounds of speech.  Think percussive sounds initially, in fact the word "percussive" is a good one:  p, k, s, v, all distinct mouth motions and sounds.  Then something senses those movements and passes my AI voice through them to generate the appropriate sounds.

Anyway, thanks again! 

 

It really makes my day learning that you heard it from me first.

[Artista 460]

@jerryskids Yeah I'm surprised they didn't think of Neulasta shot to boost your wbc production. You're always at high risk for infections while on chemo so you'd think it'd be part of the protocol. Glad you're getting it. Best wishes on your move to your new place and to hitting cancer free status soon! 

[jerryskids 5,206]

2 hours ago, Artista said:

@jerryskids Yeah I'm surprised they didn't think of Neulasta shot to boost your wbc production. You're always at high risk for infections while on chemo so you'd think it'd be part of the protocol. Glad you're getting it. Best wishes on your move to your new place and to hitting cancer free status soon! 

Thanks on all counts!  Question on Neulasta:  My heart rate has been high since my infusion last Friday (usually around 50 overnight, now more like 60-62, I wear an Oura ring to measure my sleep).  For past chemos I’ve had a high heart rate the first night which I attribute to the steroids and/or general body wackiness, but by the next night I’ve been back to normal.  The only difference is adding the Neulasta.  Have you heard of this?  Looking at the side effects on the web I don’t see it mentioned.

On the house, we closed today, I’m sitting on a folding chair as I type.  

[Artista 460]

27 minutes ago, jerryskids said:

Thanks on all counts!  Question on Neulasta:  My heart rate has been high since my infusion last Friday (usually around 50 overnight, now more like 60-62, I wear an Oura ring to measure my sleep).  For past chemos I’ve had a high heart rate the first night which I attribute to the steroids and/or general body wackiness, but by the next night I’ve been back to normal.  The only difference is adding the Neulasta.  Have you heard of this?  Looking at the side effects on the web I don’t see it mentioned.

On the house, we closed today, I’m sitting on a folding chair as I type.  

I had bone pain se but have heard of fast heart rate, though not common in my group of peeps at that time. I'd report it to your doc asap. Maybe you are allergic to it or something. Fast heartbeat should only be a se of working out. 

[jerryskids 5,206]

2 hours ago, Artista said:

I had bone pain se but have heard of fast heart rate, though not common in my group of peeps at that time. I'd report it to your doc asap. Maybe you are allergic to it or something. Fast heartbeat should only be a se of working out. 

Thanks.  I'll shoot them a message tomorrow.  Other than the heart rate I feel fine though, so it's not an emergency.   

[RaiderHaters Revenge 3,585]

keep an eye on your mail Monday, I was without a car til this morning

 

[wiffleball 4,643]

Have you thought about going to saint Jews? Not Saint Jude's, that's for kids. Saint Jews treats cancer but you only have to pay wholesale prices.

 

... and watch Schindler's list while on chemo. 

[jerryskids 5,206]

Drip, drip, drip… on infusion #6, chemo #5.  Fun miscommunication with the nurse; I asked what the first drips were and she said anti-nausea and steroid in parallel, and we still had Benadryl and Pepcid to go.  She gave me the nausea/steroid meds and very soon I’m feeling… quite happy.  I mentioned it to her and said I haven’t noticed that in the past from these meds.  She said oh, I stuck the Benadryl in the steroid bag, does it feel like that?  Why yes, yes it does!    

Met the PA before treatments; it occurred to me that I haven’t met the Oncologist since he and I discussed my good scan results.  Perhaps I went to a lower DEFCON status where I don’t need him.  Anyway, I sent her an email before the meeting asking to discuss the plan moving forward, she said she saw it and talked to the doc, and we can do scans in 3 weeks and decide.  It seemed like “decide” meant keep with the Keytruda or ??? But not keep with the chemo.  I told her that I’d rather get the 6th chemo before the scan since I’m handling them fairly well, she said she would talk to the doc and let me know next week.  I just want to kill as much of this stuff as can be done.

On that note, I had already been taking CBD, but I found the following article which basically got some hella good results with CBD and the exact treatments I’m getting for the exact cancer I have.  So I reckon I’ll keep up with it.   

https://www.nature.com/articles/s41598-020-77674-y#Fig1

Quote

Cannabidiol enhances cytotoxicity of anti-cancer drugs in human head and neck squamous cell carcinoma

Scientific Reports volume 10, Article number: 20622 (2020) Cite this article

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• Yoon Young Go, 
• Su Ra Kim, 
• Do Yeon Kim, 
• Sung-Won Chae & 
• Jae-Jun Song 

Abstract

Cannabidiol (CBD) has anti-tumorigenic activity. However, the anti-cancer effect of CBD on head and neck squamous cell carcinoma (HNSCC) remains unclear. The cytotoxicity of CBD on HNSCC was analyzed using cell survival and colony-forming assays in vitro. RNA-seq was used for determining the mechanism underlying CBD-induced cell death. Xenograft mouse models were used to determine CBD’s effects in vivo. CBD treatment significantly reduced migration/invasion and viability of HNSCC cells in a dose- and time-dependent manner. HNSCC mouse xenograft models revealed anti-tumor effects of CBD. Furthermore, combinational treatment with CBD enhanced the efficacy of chemotherapy drugs. Apoptosis and autophagy processes were involved in CBD-induced cytotoxicity of HNSCCs. RNA-seq identified decreased expression of genes associated with DNA repair, cell division, and cell proliferation, which were involved in CBD-mediated cytotoxicity toward HNSCCs. We identified CBD as a new potential anti-cancer compound for single or combination therapy of HNSCC.