I have Cancer :/ -- still doing well

[jerryskids 5,206]

10 hours ago, Fireballer said:

LOVE hearing this Jerry.  I don't think I've ever been happier for a complete stranger!

Thanks!

To all, on a related note, I have a dilemma on the Keytruda page.  In a discussion about GI issues somebody said their oncologist suggested probiotics for colitis.  Hmm, sounds interesting, good gut bacteria seems like a good thing.  I google and sure enough it can help with colitis.  But then I look up probiotics with Keytruda and... eesh, I find a study which shows a 70% REDUCTION in Keytruda effectiveness.  

So I'll pass on that, but my question is:  do I say something on the page?  I don't know this person at all, and the admin seems adamant about NOT providing medical advice.  It's certainly possible that this particular oncologist not only knows this but has identified a probiotic which doesn't have this negative effect, but my (now somewhat large) experience with the medical community is that in general they don't know d1ck about diet.  I'm thinking of sending just this person a PM, but I'm leaning to just keeping my trap shut.

Thoughts?

[MTSkiBum 1,594]

44 minutes ago, jerryskids said:

Thanks!

To all, on a related note, I have a dilemma on the Keytruda page.  In a discussion about GI issues somebody said their oncologist suggested probiotics for colitis.  Hmm, sounds interesting, good gut bacteria seems like a good thing.  I google and sure enough it can help with colitis.  But then I look up probiotics with Keytruda and... eesh, I find a study which shows a 70% REDUCTION in Keytruda effectiveness.  

So I'll pass on that, but my question is:  do I say something on the page?  I don't know this person at all, and the admin seems adamant about NOT providing medical advice.  It's certainly possible that this particular oncologist not only knows this but has identified a probiotic which doesn't have this negative effect, but my (now somewhat large) experience with the medical community is that in general they don't know d1ck about diet.  I'm thinking of sending just this person a PM, but I'm leaning to just keeping my trap shut.

Thoughts?

I would send them a link to the study via pm as long as that study is from a reputable site. 

[Pimpadeaux 2,267]

12 hours ago, Bert said:

Don't worry jerry he is so bad with a nine iron he couldn't hit Stacy Abrahams and Mama June standing side by side.

I can't argue with that. I suck at golf, but I can drink a lot of beer while doing it.

[jerryskids 5,206]

36 minutes ago, MTSkiBum said:

I would send them a link to the study via pm as long as that study is from a reputable site. 

Thanks, in particular for the "reputable site."  It is reputable, but as I went back and re-read it, at the end it says the study had not been published in a peer-reviewed journal yet.  Here is the link to the article which links the study, if interested:

https://www.healthline.com/health-news/probiotics-linked-to-poorer-response-to-cancer-immunotherapy-in-skin-cancer-patients

That was 2019 though.  There were a ton of authors on the study if you click through to it, including scientists from the companies which make these drugs, but I didn't look to see if it was ever peer reviewed.  Also as you keep scrolling down, there are in fact development activities on a probiotic which attempts to mimic the gut microbiome of people who respond well to immunotherapy.

So I will just shut up and not provide medical advice.   

[MTSkiBum 1,594]

It is difficult to draw conclusions based on this study, I am unsure if it would be true for other types of cancer, etc.

 

The conclusion is over my head.

 

https://www.abstractsonline.com/pp8/#!/6812/presentation/4578

 

Conclusion: AD of the GM varies by response regardless of treatment type. While preliminary, this data points to the idea that the GM in melanoma patients may be negatively influenced by probiotics and could be targeted by dietary manipulation. Larger prospective and interventional studies are needed to assess the relationships between host lifestyle factors, the GM and response to melanoma therapies

[jerryskids 5,206]

4 minutes ago, MTSkiBum said:

It is difficult to draw conclusions based on this study, I am unsure if it would be true for other types of cancer, etc.

 

The conclusion is over my head.

 

https://www.abstractsonline.com/pp8/#!/6812/presentation/4578

 

Conclusion: AD of the GM varies by response regardless of treatment type. While preliminary, this data points to the idea that the GM in melanoma patients may be negatively influenced by probiotics and could be targeted by dietary manipulation. Larger prospective and interventional studies are needed to assess the relationships between host lifestyle factors, the GM and response to melanoma therapies

Yeah, that was the study.  Clearly the data is not provided, and it is over my head as well.  It did say in the results:

Report of probiotic (42%) and antibiotic (29%) use at baseline was associated with lower AD (p=0.02). 

That sounds bad... anyway, another variable is, as you point out, this focused on melanoma, and probably a specific type.  Keytruda while used for melanoma is used for others as well including mine (squamous cell carcinoma).  Just too many variables to play doctor on the internet with other people.

Moving away from that, I find the whole concept of the GM (gut microbiome) fascinating.  It appears that the real conclusion is that a diverse, healthy microbiome is an important factor in positive results.  So the question is how to maintain/improve that, which I am trying to do by increasing the fiber in my diet.

The fascinating part is:  why is that a factor?  We tend to think of our brain controlling our bodies, but there are several other systems which have control, and in fact those systems affect the brain (moreso than vice versa).  The GM is one such system.   

[Bert 1,091]

11 hours ago, Pimpadeaux said:

I can't argue with that. I suck at golf, but I can drink a lot of beer while doing it.

That's really the most important!

[Bier Meister 1,514]

🩺

[Artista 460]

Great to hear scans look good! I've pm'd info that could be an issue before saying bring it up with your onc. 

On the breast cancer board, we can talk about anything. There's a disclaimer in some forums that says to always consult your medical doctor starting something new.

 

[jerryskids 5,206]

It's been a while since I updated this, which I haven't done because everything has been good.  Until now.  Had my quarterly scan today, and there is a new nodule in my lung.  It's small, 4mm, and it needs to be at least 10mm (1cm) to biopsy.  

I met the PA as scheduled (not the Onc); she gave me the "well, it's small, and we don't know what it is, so we'll watch it (meaning, do another scan in 12 weeks as scheduled).

Me:  "What else could it be?"

Her: "Well, umm, maybe Valley Fever?"

I requested to meet with the Onc vs. her on my next scheduled infusion date (7/14) and she complied; that new appointment has been confirmed.  I'll have a chat with him saying: presuming it is cancer, what are our options? He implied last year that there were other options if the initial treatment didn't work, so I'm cautiously optimistic.  And if conventional options stop working, I think I've mentioned that he is also tied into the research community so there may be some options there.

Mostly this is a kick in the nuts to my (over)confidence -- I've had good scans for almost a year, and in my head my treatments had whacked everything and I had beat the odds and was just going through the motions of more treatments.  Now I know that will never be the case.   

[Bier Meister 1,514]

[WhiteWonder 2,172]

damn, sorry to hear that, and sorry to hear the PA had lousy bedside manner.  I get it, regardless of the size, given your history, I would say the same thing... what else could it be?

I've lost family members to different cancers yet I dont know the answer to this....  Why is the response to just watch it? Is it because any kind of treatment, if its not cancerous, would be detrimental to your body? I guess im asking, what is the harm is starting treatment asap, regardless of how small it is?... or are you still getting regular treatments?

[jerryskids 5,206]

4 minutes ago, WhiteWonder said:

damn, sorry to hear that, and sorry to hear the PA had lousy bedside manner.  I get it, regardless of the size, given your history, I would say the same thing... what else could it be?

I've lost family members to different cancers yet I dont know the answer to this....  Why is the response to just watch it? Is it because any kind of treatment, if its not cancerous, would be detrimental to your body? I guess im asking, what is the harm is starting treatment asap, regardless of how small it is?... or are you still getting regular treatments?

Great question, which to my understanding you answered yourself.  The immuno I'm currently on has few side effects, so you can do it longer term.  Chemo beats the hell out of you so you can only do so much of it, although maybe there are stronger batches and/or other cocktails I could take which would have a more permanent approach.  But eventually the cure is worse than the disease.  Similarly, radiation was great for my throat because that was just muscle, but it does a lot of damage.  So you can play whack-a-mole with individual tumors like the one I now have, but to radiate the entire lung like they did that side of my throat would severely damage the functionality of the lung.

You've touched on something I started to type in my previous response but back-buttoned because it was maybe too negative for what I know now but... this is how I presume it ends.  You exhaust all treatments to the point where they would kill you, or make you wish you were dead, and yet it comes back again.  I'm not there emotionally and don't plan to go there if I can avoid it, because like I said there may be other treatments if needed down the road and I'm just speculating at this point.

[WhiteWonder 2,172]

3 minutes ago, jerryskids said:

Great question, which to my understanding you answered yourself.  The immuno I'm currently on has few side effects, so you can do it longer term.  Chemo beats the hell out of you so you can only do so much of it, although maybe there are stronger batches and/or other cocktails I could take which would have a more permanent approach.  But eventually the cure is worse than the disease.  Similarly, radiation was great for my throat because that was just muscle, but it does a lot of damage.  So you can play whack-a-mole with individual tumors like the one I now have, but to radiate the entire lung like they did that side of my throat would severely damage the functionality of the lung.

You've touched on something I started to type in my previous response but back-buttoned because it was maybe too negative for what I know now but... this is how I presume it ends.  You exhaust all treatments to the point where they would kill you, or make you wish you were dead, and yet it comes back again.  I'm not there emotionally and don't plan to go there if I can avoid it, because like I said there may be other treatments if needed down the road and I'm just speculating at this point.

That all makes sense and is kind of what I figured. As someone who hasn’t been through it, it’s easy for me to say “well, let’s treat this thing while it’s small”

[BunnysBastatrds 1,920]

On 2/10/2022 at 10:27 AM, MTSkiBum said:

It is difficult to draw conclusions based on this study, I am unsure if it would be true for other types of cancer, etc.

 

The conclusion is over my head.

 

https://www.abstractsonline.com/pp8/#!/6812/presentation/4578

 

Conclusion: AD of the GM varies by response regardless of treatment type. While preliminary, this data points to the idea that the GM in melanoma patients may be negatively influenced by probiotics and could be targeted by dietary manipulation. Larger prospective and interventional studies are needed to assess the relationships between host lifestyle factors, the GM and response to melanoma therapies

 To many variables imo. Glad you’re doing better my friend.  

[Strike 3,979]

Sorry to hear Jerry.  It seems pretty small now so I'm hoping it turns out to be a false alarm.  Looking forward to hearing about your next appt.

[vuduchile 1,941]

[jerryskids 5,206]

50 minutes ago, WhiteWonder said:

That all makes sense and is kind of what I figured. As someone who hasn’t been through it, it’s easy for me to say “well, let’s treat this thing while it’s small”

Oh, I agree that I want to treat it as early as possible.  A year ago when the first metastasis popped up, by the time they got around to doing the second scan (CT, the first was a PET, I'll skip the difference) it had already grown to > 1cm.  Even then they wanted to wait and watch; I said thanks but I'd rather be aggressive sooner than later.

My next appointment is in 3 weeks with the Onc; I'll have this same discussion with him.  Knowing now that there are only so many bullets in the treatment gun, I'll be more receptive to a wait and see approach, at least until the next scan.  Plus the day after the appointment I'm going on a two-week vacation which I'd prioritize over a few week earlier treatment, so even if he were willing to do something sooner, I'd wait until August.  A few weeks won't make a significant difference in a treatment working or not.

[DonS 3,067]

Fuuuuccccckkkkkk.  Make this new tumor your b1tch just like the previous one. 

[Voltaire 4,560]

 

[Old School 360]

Well hell. Again the uncertainty of the discovery and the waiting for a clear answer is frustrating. 
You’ve kicked ass up to this point and I expect you to continue doing so.

[wiffleball 4,642]

You know I'm always wishing the best man. I mean you know when I'm not looking at p*** or well that would just be weird. Thinking about you while I was looking at p*** and well...

God damn,  this got awkward.

[jerryskids 5,206]

Thanks all.  Even wiff.   

It occurred to me in the middle of the night that I do have that other nodule that's just been sitting there doing nothing for a year, so maybe this is another one of those.  Not much I can do besides meet with the onc in 3 weeks and ask what the options are if it proves to be malignant, which still seems like the probably scenario.  Presuming they don't accelerate any scans, the next scheduled scan (around mid September) will be a wee bit stressful.  

[Thornton Melon 544]

Wow. Good luck, skids. Hoping it's nothing 

[wiffleball 4,642]

6 hours ago, jerryskids said:

Thanks all.  Even wiff.   

 

I thought it was funny.

[jerryskids 5,206]

Possible good news, I just tested positive for Covid with one of the free at-home tests from the gubment.  Symptoms are a 100 fever and I've been coughing all day (I was worried it was due to the tumor).  I actually have a "real" test at Mayo tomorrow, because I'm scheduled for a colonoscopy on Tuesday.  Odds are they'll cancel the procedure, presuming I test positive.

Why possible good news?  Because sometimes Covid can cause a pulmonary nodule.

Quote

One of the many faces of COVID-19 infection: an irregularly shaped pulmonary nodule

• Sevtap Arslan & 
• Emre Ünal 

Insights into Imaging volume 12, Article number: 48 (2021) Cite this article

• 57k Accesses

• 1 Altmetric

• Metricsdetails

Dear editor,

We read with great interest the educational review article titled ‘COVID-19 pneumonia: the great radiological mimicker’ by Duzgun et al. [1] in the November 2020 issue of Insights into Imaging. We agree with the authors that COVID-19 infection may mimic other airspace disorders on imaging. It is well known that the most common computed tomography (CT) finding of COVID-19 pneumonia is bilateral ground-glass opacity (GGO) with accompanying consolidation. However, the differentiation of COVID-19 infection with other disorders may not be straightforward due to various imaging findings. The incidence rate of irregular shaped solid nodules on CT scans of patients with COVID-19 infection has been reported as 3–12% in the literature [2,3,4]. We would like to share a challenging case of COVID-19 pneumonia presented with unusual imaging findings.

A 57-year-old smoker male patient presented to the emergency department with a 4-day history of cough and joint pain. His past medical history was unremarkable except for chronic kidney disease. Physical examination revealed abnormal lung sounds. The subsequent blood tests demonstrated lymphopenia (700/µl) and elevated level of C-reactive protein (10 mg/l). Chest CT was performed following polymerase chain reaction (PCR) test positivity for COVID-19 infection. An irregularly shaped solid nodule 2 cm in diameter was found in left upper lobe of the lung along with the CT findings compatible with COVID-19 pneumonia (Fig. 1a, b). Primary lung cancer could not be excluded with the imaging findings per se, in a smoker patient. According to the Fleischner Society 2017 guidelines [5], percutaneous transthoracic core needle biopsy was planned after the quarantine period ended. On pre-procedure CT scan, the nodule appeared to be decreasing in size with associated subpleural lines (Fig. 1c). Percutaneous biopsy procedure was avoided, and a follow-up CT was recommended. The follow-up CT scan obtained after 3 months revealed complete resolution of the nodule (Fig. 1d).

In conclusion, CT is an indispensable tool in patients with clinical suspicion of COVID-19 infection. Imaging plays a significant role in the diagnosis and also evaluation of treatment response in COVID-19 infection. However, COVID-19 infection may result in various imaging findings since it is the great radiological mimicker as reported by Duzgun et al. [1]. Despite being rare, solitary pulmonary nodules with irregular margins are one of the many faces of COVID-19 infection. In the presented case, a pleural tag which gives rise to suspicion of organizing pneumonia was also observed on CT [6]. Spontaneously regressing solitary pulmonary nodule may be associated with organizing pneumonia which has been shown to occur secondary to COVID-19 infection [7].

https://insightsimaging.springeropen.com/articles/10.1186/s13244-021-00987-7#:~:text=Despite being rare%2C solitary pulmonary,faces of COVID-19 infection.

With any luck the nodule is from Covid pneumonia.

That being said, what is the current state of the art for OTC treatment of Covid?  I'm probably not going to get any confirmed diagnosis or related prescription until tomorrow at the earliest, more likely Monday on the prescription.  I take Vitamin D daily, plus got some sun today although not much.  Also took some ibuprofen.  TIA.   

[jerryskids 5,206]

2 hours ago, wiffleball said:

I thought it was funny.

No worries, I laughed.   

[Reality 2,710]

I haven't checked in on this thread for quite a while, apologize for that. Hopefully this latest thing isn't really a thing and you have 35 more years.

Thinking about you on a brutally hot evening in southern Indiana. Hoping I get 35 more years as well. 

[jerryskids 5,206]

7 minutes ago, Reality said:

I haven't checked in on this thread for quite a while, apologize for that. Hopefully this latest thing isn't really a thing and you have 35 more years.

Thinking about you on a brutally hot evening in southern Indiana. Hoping I get 35 more years as well. 

No worries, this place is where I feel I can say stuff I don't otherwise say.  Nobody in my family (besides my wife) knows about the new nodule yet.  One of my daughters is visiting her boyfriend for a week, and the other has 3 friends in town in NJ for the week, so I don't want to bother them at the moment, especially since I don't really know anything yet.  But I've stated before that my family was pathetically unhealthy in sharing such health info, so I tend to err on the side of sharing it.  I'll probably let them know next week.  My son is just chilling in his house as far as I know, but I don't want to tell him when I don't tell the girls.

I've got another thing to consider -- the youngest daughter is kicking ass at her fashion internship in NYC.  We found out that the head designer said she is the best intern she's ever had, and she wants to try to keep her.  Folks there have talked to her about transferring to Parsons or FIT (the two top fashion schools in NY), but since she is a year from graduating that doesn't make sense.  Anyway, she will be having discussions in the next few weeks with the company about next steps when the internship ends (7/15), including maybe coming back out there in a year, and I don't want her thinking I'm imminently dying and having that negatively influence her discussions about her career.  So I'm inclined to wait until my 7/14 meeting with the onc at least before springing the possibility of bad news on them.

[Reality 2,710]

4 minutes ago, jerryskids said:

No worries, this place is where I feel I can say stuff I don't otherwise say.  Nobody in my family (besides my wife) knows about the new nodule yet.  One of my daughters is visiting her boyfriend for a week, and the other has 3 friends in town in NJ for the week, so I don't want to bother them at the moment, especially since I don't really know anything yet.  But I've stated before that my family was pathetically unhealthy in sharing such health info, so I tend to err on the side of sharing it.  I'll probably let them know next week.  My son is just chilling in his house as far as I know, but I don't want to tell him when I don't tell the girls.

I've got another thing to consider -- the youngest daughter is kicking ass at her fashion internship in NYC.  We found out that the head designer said she is the best intern she's ever had, and she wants to try to keep her.  Folks there have talked to her about transferring to Parsons or FIT (the two top fashion schools in NY), but since she is a year from graduating that doesn't make sense.  Anyway, she will be having discussions in the next few weeks with the company about next steps when the internship ends (7/15), including maybe coming back out there in a year, and I don't want her thinking I'm imminently dying and having that negatively influence her discussions about her career.  So I'm inclined to wait until my 7/14 meeting with the onc at least before springing the possibility of bad news on them.

It's a delicate balance, I'm sure they'd appreciate being in the know though. Sounds like you've got some great kids and I wouldn't expect anything less.

I feel ya though, I've got a soon to be sophomore who is pre med biology major who runs track for USI, 400 and 4x400, he's already top 10 in school history in both. The school announced this year they are moving to D1. It's crazy, my daughter, who also finished her master's in May, is a supervisor in the health care payment posting department at the company she works for who's destined to have a 3 letter title that starts with C. I'm bragging a bit but, we're all very fortunate, they are the way they are because of the groundwork we (the collective we) laid from the day they were born. 

They are smart kids who care about their pops greatly, let them know what's going on. My point is, I'm feeling a bit vulnerable tonigh because of your situation but, hope things work out in the best possible way for you.

[jerryskids 5,206]

I just had my latest scans, and good news:  the new nodule is unchanged.  Well, the radiology report said maybe a smidge bigger, but at that size it barely registers on the scan so the Onc is going with "no change."  While nothing is guaranteed, IMO this significantly improves the odds that it is NOT cancer.  Recall that I have that other nodule, a little bigger actually, that shows up as unchanged for the past year and a half.  

I'll still be a little nervous at my next scan in December, because it is always nerve wracking, but I'll be a little less nervous than this time around.  Hopefully it stays another consistently unchanged nodule.

Looks like you are stuck with me a little while longer.   

[BeenHereBefore 1,333]

23 minutes ago, jerryskids said:

I just had my latest scans, and good news:  the new nodule is unchanged.  Well, the radiology report said maybe a smidge bigger, but at that size it barely registers on the scan so the Onc is going with "no change."  While nothing is guaranteed, IMO this significantly improves the odds that it is NOT cancer.  Recall that I have that other nodule, a little bigger actually, that shows up as unchanged for the past year and a half.  

I'll still be a little nervous at my next scan in December, because it is always nerve wracking, but I'll be a little less nervous than this time around.  Hopefully it stays another consistently unchanged nodule.

Looks like you are stuck with me a little while longer.   

Great to hear.

[Pimpadeaux 2,267]

21 minutes ago, jerryskids said:

I just had my latest scans, and good news:  the new nodule is unchanged.  Well, the radiology report said maybe a smidge bigger, but at that size it barely registers on the scan so the Onc is going with "no change."  While nothing is guaranteed, IMO this significantly improves the odds that it is NOT cancer.  Recall that I have that other nodule, a little bigger actually, that shows up as unchanged for the past year and a half.  

I'll still be a little nervous at my next scan in December, because it is always nerve wracking, but I'll be a little less nervous than this time around.  Hopefully it stays another consistently unchanged nodule.

Looks like you are stuck with me a little while longer.   

I always cringe when I see this thread bumped, because there is a solid chance of bad news 

And it was heartbreaking to see you're going to live a little longer.

#alsonotreally

Great news! 

[WhiteWonder 2,172]

28 minutes ago, jerryskids said:

 

Looks like you are stuck with me a little while longer.   

So more time to beat you like a drum in the IBL?

 

[Strike 3,979]

Great news Jerry.  Thanks for the update!

[Big Blue 06 195]

This is fantastic news, I’m glad things are looking good for you!

[wiffleball 4,642]

Damn Jerry I've heard about those nodules. Blow is a little bit of a PSA that should help you at least not feel quite as alone or freakish:

 

https://www.google.com/search?q=pitch+perfect+nodes&oq=pitch+perfect+no&aqs=chrome.1.0i512l2j69i57j0i512l6.8759j0j7&client=ms-android-tmus-us-revc&sourceid=chrome-mobile&ie=UTF-8#kpvalbx=_zIIhY8_mKNarqtsPvaWtqAw_36

 

[jerryskids 5,206]

8 hours ago, Pimpadeaux said:

I always cringe when I see this thread bumped, because there is a solid chance of bad news 

And it was heartbreaking to see you're going to live a little longer.

#alsonotreally

Great news! 

Thanks!  I've learned, particularly when it is good news, to not write my updates like a creative writing essay with the big cliffhanger at the end.   

[jerryskids 5,206]

5 hours ago, wiffleball said:

Damn Jerry I've heard about those nodules. Blow is a little bit of a PSA that should help you at least not feel quite as alone or freakish:

 

https://www.google.com/search?q=pitch+perfect+nodes&oq=pitch+perfect+no&aqs=chrome.1.0i512l2j69i57j0i512l6.8759j0j7&client=ms-android-tmus-us-revc&sourceid=chrome-mobile&ie=UTF-8#kpvalbx=_zIIhY8_mKNarqtsPvaWtqAw_36

 

I love that entire franchise.   

The two broadcasters at the competitions are particularly hilarious.   

[bostonlager 2,465]