This article says ALP flare initially... - Advanced Prostate...
This article says ALP flare initially may mean more aggressive therapy should be done
That's a 28 year old article so at the time the flare may have been the only way to determine who had bone metastases. Today that would be revealed by early imaging and the standard care would be to begin with triplet therapy, which is definitely more aggressive therapy than what was available when the article was written.
Hi again. 😊
Dad is 83 so the MO’s not advising chemo upfront. But Tall Allen says that’s the best to do. Keeps me so conflicted as the doctors here just dismiss it and say doublet therapy is enough. One MO said at this age forget chemo and another MO said it would be overkill.
I would agree with TA. I wish my dad did chemo up front as that was when he was strong enough. I know I have shared my dad's story but 18 months after widespread metastatic prostate cancer at initial diagnosis he is really frail and ADT is no longer working and now chemo isn't a great option.
Hi again 🤗
Sorry to hear about the very hard time you are going through. It is heart breaking to just read it. How old is your dad ?
Are you planning to do any of the lu-177 etc ?
My dad is 81. Was 79 when diagnosed. We are meeting with oncologist and palliative care over the next ten days and will have a psma scan. I am not thrilled with any of the choices and Pluvicto doesn't seem to be all that it is cracked up to be. Additionally, I read that for over 75 the average number of doses are 2-4 before it is stopped. The question is with my dad is he better off staying on Zytiga and blocking some of the cancer, but not all, that will be the conversation, but looking at how frail ADT and if course the cancer made my dad I wish we did something different at the start.
🙁
Your MO had not offered the chemo option ? Was he in decent health when he was diagnosed ? He has been on xtandi I think and is now on Zytiga ?
My dad's case was a little unique. He was diagnosed in the ER with stage 4. The oncologist started him immediately on bicalutamide and lupron telling us that he hoped to have it work for 6-12 months before moving on to next ADT. He then started Xtandi a d failed that quickly. He was due to start Zytiga at first but because it came with the steroid the pharmacist oncologist changed the order as my dad has galcoma and is legally blind in one eye and limited vision in the other. He later told us that my dad would have died by Christmas had we not started original therapy when we did. But outside of the debilitating back pain had we done a triple therapy at the start it would have been when my dad was strongest. At some point we believe my dad had a small stroke, and was diagnosed with vascular dementia, he has mild cognitive impairment. For most patients they will never be as strong as they are today. But quality of life should have been a discussion up front and wasn't. Read "Being Mortal" chapters 5-8 right away.
It depends on if your father is healthy enough to tolerate and benefit from chemo. No one here can determine that. Two oncologists have said that it is not appropriate for him. That carries a lot of weight.
Ok - When I diagnosed in 2019 i was in india and I asked for CHEMO upfront and MO said NO than I asked for radiations than MO said. I was not even prescribe single medicine for three month after Orchiectomy. First medicine for bicalutamid for 3 months that's all
Three years no medicine because PSA was under control and now its retuning so i am working for next treatment. I was convinced in 2019 in way that i need all the options in future so do not use right now.
What was your initial diagnosis. Did you have bone mets ? So all you did was Orchiectomy and later bicalutamide ?
Yes. I did had bone mets and immediate Orchiectomy and later started bicalutamide for 3 months
Yes I do not know the Gleason score. I follow the mets count from PSMA Pet scan. AHD, gujarat
How many bone mets you had at diagnosis
You mean Ahmedabad ?
Ya i do not know the count .
Are you Indian or American ?
Indian
Staying in usa ?
Yes now continue treatment in USA
Ok. I wish you many more healthy years 😊
I've heard, for what it's worth, that an initial rise in ALP is good IF it then begins to fall and falls steeply. That was the response I had. I hope that's correct, but certainly do not know for sure.
Thanks. How come you are only on lupron within bone mets ? Was it a low Gleason ?
No, high Gleason. In 2018 the immediate addition of Zytiga was new; my oncologist did not leap on it.
As time passed I got six other opinions. Those docs were split on whether to add at those later dates because PSA was under control. So I just stayed on Lupron. I have asked my MO repeatedly about adding Zytiga or Xtandi, but he's resisted it. PSA has doubled recently over 18 months, so we're (I'm) trying to figure out where to go.
I'm so much into Humor that I forget what and to whom I posted to in a serious vein (ignore quip) or in giving advice.
So just to let you know, my M.O. at MSK had be continue my many years of Lupron but replaced my many years of Casodex with Nubeqa (as of April 2023). Now (06/21/2024) my PSA has been the lowest (. 0.41) it's been since 12/10/2014 when it was 0.46. So apparently something is working, and I thought you may want to discuss this "success" with your M.O.
The only issue I have regarding the Nubeqa is, I now have a problem every time I write words containing the letter "Q" followed by the letter "U"..
Good Luck, Good Health and Good Humor.
j-o-h-n
Hang on. I'm checking my non-serious veins. Yes, I think they'll take maybe one shot of Lupron...
Seriously, I'm going to mention Nubeqa. He'll probably resist because it is only for non-metastatic patients. But I'll bring it up. Does Medicare cover it if you're metastatic?
For how long for you have a rise in ALP before it fell
My recollection is that it begin to rise not long after (maybe months) I began Lupron and then began to decline 3-6 months later. By the 2 year mark after starting Lupron, ALP had hit levels below the low end of the normal range, and had remained there for about 4 years.
I can get you more exact dates if you need, but my ALP has been excellent after that initial rise.
Thanks. Just got dad’s reports now. ALP fell from 325 2 months ago to 57 today 🙏🏻
