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Posts posted by jack14

  1. On 9/20/2020 at 5:21 AM, FuriousGeorge said:

    My dad is 72 years old, and has had stage 4 local adenocarcinoma of the prostate since early 2019.  It was well controlled under the normal treatment protocols, and he was expected to have at least a half decade more to live (remote chance of being cured), until it suddenly "transformed" into smalll cell carcinoma.  As I've come to learn, it is rare, but it happens, and when it does it is at least as aggressive as SCC of the lungs, and maybe more treatment resistant.

    Without getting into the whole horrible history of his case, I can sum it up as follows:  he was an otherwise healthy 72 year old man four weeks ago, and today it took five minutes to rotate his head off of his shoulder in the morning due to the pain it caused him, and his doctors say he has days to live, because he is too sick for chemo or immune therapy.  They say this is rare, but they've seen it,  The head nurse was not sure he could survive the 15 minute ride by ambulance to his house, yesterday.

    Something strange began happening this morning, however.  Perhaps it was that we had brought him home from the hospital according to his wishes, or perhaps it was the new steroidal anti-inflammatory, or THC/CBD we added to his regimen, or perhaps it was something else, but today he suddenly became much better.  He ate more than I did today(granted, I lack appetite these days), he's taking selfies for the folks who are reaching out to him on facebook, he's flipping through netflix to watch 13-part documentary series (he got through at least 3), and trying to to get out of bed, like he could last week, and like he did without a second thought two weeks before that.

    he's still very debilitated, but suddenly, for the first time since he fell ill, he's gotten better from one day to the next.  Words can't express what this one day has meant to us, but we want more, obviously.  We are not expecting miracles, we fully understand that this could be transient, but we have never given up hope.  He's not scared to die, but he'd rather live, and suddenly he has some quality of life.

    If this continues, I'm feeling inclined to push his onc doc to take another look, and not write him off.

    To that end, I was hoping to get some advice about "last ditch" efforts for SCC patients.  The goal overall is to just get him healthy enough for chemo, and cross our fingers for a great response,.  Is there something else I could be doing?

    I have found and acquired research chemical (a SARM that is available on the grey market because body builders use it) that had a good phase ii but failed phase iii for cachexia in metastatic cancer.  I'm thinking, in coordination with the rest of my family, of administering it and hoping that combined with the THC/CBD it may give him appetite and anabolism, and maybe in a few more weeks he can be like he was in August, which would be good enough to start chemo, then...  who know?  he's got "future great responder" written all over him.


    I know that this is a lung cancer forum, and this is not exactly that, but since it is small cell carcinoma, I'm hoping someone will give me some good advice about either making him stronger in order to start chemo, or additions to chemo that may help chemo work or help mitigate chemo's harm.

    Thanks for reading.

    How is he doing?


  2. I hate hearing that Valerie. Steff and Tom are my go to people, along with many others in here. I thank God that I found them too! I know that for me, my symptoms following an  infusion of Keytruda, (seven so far), although much less than what you are endurring, seem to have lessened over time. I don't know if that is my body adjusting and getting more used to it, or the fact that I have been focusing more on staying hydrated. All the time. I drink Parents Choice or Gerbers water for babies lol. It is the purest and cleanest on the market IMO and it has naturally pure minerals added in precise amounts. It seems to have improved my kidney function too! I went from a creatinine of 1.4 to 1.2 and an eGfr of 50 to 60. I attribute that to more physical activity and hydration without consuming  treated tap water.  Anyway, hang in there,  and as Tom says, "stay the course". Oh, and you are not alone, by any measure.

  3. 8 hours ago, Tbaker said:

    Well I was in the hospital 8 days this time my tumor had be come inflamed, pushing on my ribs.. got that controlled, palliative care kind of dropped the ball (it happens) while I was there I was started radiation.  I've have 3 maybe more. 

    I also went to the UofM this week for another opinion.  

    He said, my doctor is doing what he would do as well.  

    At least they have got you back on the path. Hang in there, and like Tom always says, "Stay the Course".   The rads will likely obliterate that damn thng too!


  4. I asked my Oncology PA  about my taking this years flu vaccine, the pneumo23 vaccine, and the shingles vac. Yes, to all but shingles. She also said they only give the standard flu vac because they don't believe there is any benefit in the larger dose for their patients. I told her I would wait till next month and she said that is when they would have given it to me anyway. I plan on getting it at my PCP's as I usually do.


  5. 13 hours ago, GaryG said:

    Jack & May: That sounds like good progress  on many fronts.  I wish you continued  success   because you fought hard and deserve it plus it gives the rest of us hope.


    Thanks Gary I hope you are doing well too?

  6. Well, I got the Magic Mouthwash from the VA today. Its called Dukes formula. This hasn't got any lidocaine in it, but has hydrocortisone, benadryl, and nystatin in it. Oh and I picked up a copy of my Oncologists notes today from the hospital. They are very impressive, in that they are so thorough and correct. I expected some errors to be honest. I guess the use of a transcriber has a lot to do with that.


  7. I am humbled Michelle and Gary. Truth is, I have received many many more blessings than I deserve over the sixty nine years I have been blessed with. Only in the last decade have I began falling apart lol. I feel like an old humpty dumpty, albeit a mighty grateful one.

  8. Yes I will do that Michelle. Thankyou, I have sure had a "LOT" of practice rsearching medical matters. Thirty years in the healthcare profession as a practioner and educator. And after retiring, suffering a heart attack, heart bypass surgery, kidney stones, a juxtarenal abdominal aneurysm with open repair, a retinal detachment with several eye surgeries, and now this crap....

  9. This is the question I was going to ask. Also, I was wondering about taking the PPSV23 pneumonia vaccine (second after the PCV13) which I am past due for. I am a week and a half away from my 8th Keytruda infusion.

    I have always waited until late October for the flu shot to be sure and get through the height of the typical season. I skipped year five because of a study I read about that found some pretty convincing evidence that five vaccines in a row was linked to an increase in senile dementia.

    I just found a link that says that these vaccines(pneumonia and influenza) may actually reduce the chances.... https://www.alz.org/aaic/releases_2020/vaccines-dementia-risk.asp


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