I met with a new MO today for a second opinion. I've been taking Erleada/Lupron for almost four years with few side effects (for which I'm grateful). I'm aware that my results have been very good and I wasn't looking for advice regarding a change in my care....I just wanted to have a second doctor to go to when things change for the worse.
I came away discouraged. I knew that there are other types of hormone therapy I could switch to when my PC becomes resistant to Erleada. The discouraging part was that once patients become resistant to one form of hormone treatment, only about 20% respond well to another....and even then it's typically only for a matter of months. Further, he said that once I'm resistant to Erleada, it's likely that the next step would be chemo, or chemo plus a different type of hormone therapy. I didn't realize that chemo (which I'm not looking forward to) is probably my next step. (He did emphasize that treatments evolve all the time with PC, so these things could easily change in the next year, or so.)
Does he have it right? The success rate for another form of hormone therapy is only around 20% and my next step (after Erleada) is likely to be chemo?
I'm not a negative thinker, but I do like to have realistic expectations....even though I might not be able to affect them.
Thanks.
Ron
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NorYug
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Allen, I did say that I wasn't looking forward to chemo, not that I wasn't planning to go ahead with it. I don't know much about it, but my impression is that the chemo for PC is not as bad as for some other types. In any case, I'm pretty good about following recommendations of doctors I trust. Now, I have two MO's I like.
Thanks for your response. I really appreciate your many contributions to this board.
Thanks for clarifying. The effectiveness of chemo is all about the timing. It is most useful when the cancer is most actively growing. Few realize how much it stops and prevents pain. No fun for a couple of weeks after infusions, but it really improves long-term QOL.
I'm pretty tolerant of pain/discomfort. Frankly, I mostly hate the idea of losing my hair....but you gotta do what you gotta do. I know there are things that can help with ice/cold packs, but I haven't read much about them until the time comes.
Hi, Ron - my husband had chemo (docetaxel) - we iced hands and feet, and no trace of neuropathy (which can be permanent). Would highly recommend doing it. Hair will grow back! Also, look into fasting before and during infusions - lots of info out there. Lessens side effects, is more lethal for cancer cells. Good luck with everything.
IMHO it makes sense to look ahead, as you are doing.....on the other hand, don't be consumed by that and miss out on the good result you are now having !!!!!!!!!!!!!!!!!
Ron. I had Radiation Therapy for 3.5 months and also had Zytiga and Lupron at the same time. I remained on Zytiga and Lupron for 2 years. I have been off Zytiga and Lupron for a year now and still remain undetectable on my PSA tests every 3 months. My prostrate dancer was aggressive and stage 4 but caught early. Everyone is different and there are many different protocols. I would continue to seek another option and see if something else comes up as an alternative during those discussions. Best of Luck!!
HaakonR, both MO's I've talked to say the same thing....since my Erleada/Lupron are working so well, why would I change anything. It seems to me that since my PSA has been undetectable for over two years, it might make sense to stop them to see what happens. If the PSA starts to rise again, I could just restart them. I'm jealous.
I'm probably going to be getting a PET PSMA scan soon and have been wondering if that could show extremely low (or no) cancer which might warrant stopping the hormone therapy. Frankly, my side effects are very tolerable, but I hate to be continuing the very strong meds if not really needed.
I think that is a good direction for you. As I mentioned, and everyone is different,. I have been off now a year and still undetectable. No more Lupron or Zytiga. And as you said. If PSA rises too high you can always go back on. I am now 14 months off all meds and still undetectable.
I don’t know….I think guys here mostly say chemo for PC is not as bad as it is for other types.
Frankly, I have a pretty good life with a wonderful family. I don’t think they’d pressure me toward chemo if it was really nasty, but they would be disappointed if I didn’t suck it up and deal with it even if it only gave us six extra months together….as long as they were a decent QOL
I was on Erleada for a year. Before that Bicludimide for months. After a three monthErleada shot failed. Three weeks later started monthly Lupron and Nubeqa daily.Now over two years later my PSA is<0.02 and testosterone <.12.
Nubeqa is an oral chemo but works!
Only side effects I have is decreased energy. But as many have stated gym time, exercise and keep active off sets that. Not in any way easy but I do it as do others.
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