My dad's prostate cancer turned into small cell carcinoma of the prostate, and now his doc says he has days to live.

[FuriousGeorge]

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.

[GaryG]

So sorry to hear about your dad. While no advise in this situation is full proof unless one had first hand experience, you might seek a  second opinion. You have to send  your dad's records to a different institution  and even your oncologist might help with process if it is not his specialty.

Best of luck.

[jack14]

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?

 

[LUNGevityKristin]

Thinking about you and your dad.  How are you doing?

[FuriousGeorge]

Thank you all for the good wishes.

My dad has defied expectations, and today is not only one day past the longest life expectancy he was given, but he has also actually started to clearly improve for the first time since he was originally admitted, two weeks before that.

It’s a meandering path, but the trend is undeniably positive.  I sometimes wonder how this could be happening, given what transpired in the previous days, and what we were told, but we are just so grateful for more time with him, at home, where more than one person can visit him at a time.

He asked to leave the hospital, saying he did not want to die there, and we brought him home 15 days ago. The head nurse was not sure he’d make it home at that time.

When he got home, he needed oxygen, and could not walk or feed himself. Now, he can get into a walker and go from point A to B, albeit slowly. Yesterday, he spontaneously gained back range of motion in his arms, lifting them above his head to stretch himself out.

I’d estimate, based on the Kornofsky Performace Scale, he may be 50 out 100 now, where he could not have been much more than a 10 out of 100 when he left the hospital, and was probably 80 when he was first admitted.

I mention the Performance Scale because his oncologist suggests he’d need to be a 60/100 to start immunotherapy, and a 70/100 for chemo. The former would probably not work all that well, and the latter not all that long, but he wants to get there, and of course we do too, because we would cherish any additional quality time, and he might even be one of those great responders.

I’m still shocked by how quickly he lost ability in the one day between being first admitted and re admitted to the hospital. The last day of his first admittance he was able to walk 4 times around the oncology ward on his own. 36 hours later or so (which would be about 3 weeks ago), he was bedridden, riddled with pain, stiff, and largely immobile. Now, he might be able to make it around the oncology ward once, with the help of a walker.

[BridgetO]

Wow, it's great to hear about your dad's amazing improvement! Maybe being at home lifted his spirits and inspired him to give it his best shot. It's not unusual for people in hospice to exceed, and sometimes even far exceed, their prior life expectancy. Enjoy all the quality time you can together.

Bridget O

[LouT]

George,

I'm glad to hear about the improvement and while (like others) I can't explain it, I would just accept and go with it.  Do what you can to help this improvement and when he has reached a stage where he can take on some treatment see what happens at that point.  Please keep us updated as he progresses.

Lou