After Eligard success is "Triple" chemo advised?

Posted by rwski79 @rwski79, Jan 24 10:11am

I am 79 and had a radical prostatectomy July 24, 2024 with Gleason 9, all positive margins not able to be removed. Two PET scans showed growth of lung nodules July-Oct 30 with no other positive cancer locations. I had an ADT Eligard injection Oct 30 that reduced PSA from .99 to .06, undetectable, from Nov. 1 to January 20, 2025. PET on Jan 20 showed lung nodules "disappeared" with no other cancer locations identified. Therefore, Eligard was successful in reducing PSA and lung nodules with no signs of cancer on PET, yet CANCER REMAINS in my system.
Concern: My oncologist has recommended the "Triple" chemo plan of 6 sessions over 18 weeks ofd Docetaxel + Darolutamide and Dexamethasone.
Has anyone had a similar diagnosis? It seems a bit drastic but I will do whatever is needed, still hoping for some quality of life for next several years. I already have some neuropathy in my feet, type 2 diabetes(controlled) and heart attack 30 years ago. Oncologist states I may have 3-5 years but with Triple treatment will likely have up to 10 years. He said "have the chemo now because after other sites are identified as cancerous it's too late for the "Triple" treatments." Really?
A second oncologist opinion offered a "trial" but no real alternative to the "triple" and wouldn't say he would concur with the "triple." Again, can anyone relate to the above scenario? Advice?
Thanks!

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I am a little surprised that they say if you had more metastasis, they could not use triple therapy. Triple therapy is used with new patients who have very advanced prostate cancer to try to stop it from advancing anymore, So that comment is puzzling.

I can understand why they are recommending this. You had nodules in your lungs that got smaller after being on ADT. That usually means they are cancerous. It sounds like they are being over careful because they’re worried that your cancer which had spread before, could spread again, any time. Chemo would at least give you the best chance of wiping out all the residual cancer at this point. There are some real benefits to that.

You say that your PSMA pet test showed no cancer, That sounds like you would need doublet therapy, adding Zytiga or a ludamide. But you are a Gleason 9, that usually means that the metastasis can come back easily.

Getting a second opinion is really important with prostate cancer. You should try to get connected with another center of excellence and get their opinion on what your best treatment is. You should have a few months at least, since your PSA is continuing to drop.

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Jeff, Thanks for responding.
My 2nd opinion included chance for a trial study at U of MN adding either Nubeqa(daralutamide) or Xtandi (enzalutamide) to already having Eligard. The trial measures cognitive functions using one of two drugs, with projected outcome that one drug would have fewer cognitive memory issues. The oncologist referring me to the study thought the "Triple Chemo" advice from another oncologist was premature given my PSA drop to undetectable .01 . My PSA was .06 a month ago, via the lab, with the "triple chemo" oncologist's recommendation.
The triple chemo frightens me and I wonder if, even though I have a stage 4, Gleason 9, it is advised to proceed sooner rather than later, if my PSA is undetectable and PET of early January shows no other metastasis and disappearance of lung nodules with Eligard alone.
Advice Please
1. Stay the course with Eligard alone
2. Add Nubeqa(darolutamide) or Enzalutamide (Xtandi) from cognitive trial - toss up/50/50 chance of either drug , could be changed up after 18 weeks of 48 week trial study.
3. Add either Nubeqa or Xtandi (without trial) and stay with "both" the oncologists for time being - the one recommending Triple, Nubeqa + Eligard+ Docetaxel and other oncologist who said he'd prescribe Nubeqa + Eligard(now have had 2nd 3mo. injection) if I decided against the trial - also felt as above, triple was premature.
4. My primary care physician also thought the triple chemo was premature.
Bottom line: I want a decent quality of life (hot flashes only now) but don't want to miss "the window" to a more complete eradication of cancer given Gleason 9 etc. and triple.
*Continue PSA tests every 3 months -
*Add Nubeqa to Eligard - what will that accomplish? Primary care and U of M oncologist both say wait on "triple", MN Oncologist says do triple or add Nubeqa alone for now...although doing that alone without triple may decrease life expectancy. UGH.
*Put on my big boy pants, do chemo and accept risks?
Am quite frightened. I know I need to choose one oncologist and protocol. Opinion please!

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That test sounds like a great option. Either of those drugs Can make a difference. Darolutamide has fewer side effects and doesn’t pass the blood brain barrier so it may create fewer cognitive problems. I wonder if they take you off ADT because ADT does affect cognitive function or are they trying to figure out how much more disfunction there is with the second drug.

It’s triple therapy not triple chemo. It includes ADT, one of the lutamides or abiraterone and chemo.

If you get chemo, you can get a cap for your head that you can put in the freezer that will stay cold while you’re being treated and will reduce hair loss. Amazon sells them. Chemo is an easier than it used to be. Yes, there are side effects but for most people, they are not a major issue.

If you were a Gleason 7 then ADT alone would probably be the only drug prescribed. That’s what they did for me and it took 2 1/2 years before it failed, and I had to start on Biclutamide You are a 9 it could recur quickly without the second drug.

If you want to try to eliminate the cancer then chemo is the next best option? There is a disparity of thought that chemo should occur very soon versus later. If you are oligometastatic they usually want to do that chemo sooner. They want to bombarded those nodules that appeared to have gone away with the chemo drug and try to reduce them to nothing. Then there is the new option to do Pluvicto Before chemo, But you don’t have any visible metastasis, so it may not really help as much, it targets PSMA and your scan didn’t show any. You need to ask a doctor about this stuff, Why chemo and what they expect it to do.
.
You need to go to a different center of excellence capable place to get another opinion.

Have both of the oncologist that you’ve talked to been a Genito urinary oncologist? Those the ones that specialize in prostate cancer. Following the guidance of a doctor like that can really make a difference compared to just going with a medical oncologist. If you can’t find one come to the Ancan.org Monday meeting and you can get an answer about a doctor to go to in your area. 2 hour Meeting starts at 5pm pacific time, get there five minutes early and you will be first to be helped.

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I had quadruplet therapy. Meaning I had triplet therapy with the addition of upfront palliative radiation to my spin and ribs. I am stage 4 denovo (high volume) which means I started at stage 4 with bone metastases to my spin, pelvis, ribs, scapula, femurs, and skull. I was immediately started on Casodex for 30 days while doing 10 radiation treatments to my spin followed by 5 radiation treatments to the ribs. After 30 days I given my first injection of Eligard and the doctors put me on Nubeqa, followed by 10 cycles of chemotherapy. I requested the additional cycles of chemotherapy. This whole idea of 6 cycles was chosen not scientifically but based on avoiding additional side effect from chemo. Some people have a rough time on chemo. I iced my hands and feet to avoid nephropathy. I never got sick from chemo but the fatigue was terrible. Regardless, I went to work every day. I choose 10 cycles because I wanted to kill am much cancer up front. I did not want to leave any cells around that could later mutate. It has been almost 2 years after chemo and I feel like I am still recovering from it. Regardless, triplet therapy worked for me. I remain undetectable after 2.5 years after my initial diagnosis. May I recommend that if it is possible - stay active. Keep going to work. Have a purpose in life regardless of the Cancer. Eat a plant based diet as much as possible, do not smoke, do no drink (ever). Exercise and lift very light weights 3 times a week. Try and maintain some muscle.

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@wooldridgec

I had quadruplet therapy. Meaning I had triplet therapy with the addition of upfront palliative radiation to my spin and ribs. I am stage 4 denovo (high volume) which means I started at stage 4 with bone metastases to my spin, pelvis, ribs, scapula, femurs, and skull. I was immediately started on Casodex for 30 days while doing 10 radiation treatments to my spin followed by 5 radiation treatments to the ribs. After 30 days I given my first injection of Eligard and the doctors put me on Nubeqa, followed by 10 cycles of chemotherapy. I requested the additional cycles of chemotherapy. This whole idea of 6 cycles was chosen not scientifically but based on avoiding additional side effect from chemo. Some people have a rough time on chemo. I iced my hands and feet to avoid nephropathy. I never got sick from chemo but the fatigue was terrible. Regardless, I went to work every day. I choose 10 cycles because I wanted to kill am much cancer up front. I did not want to leave any cells around that could later mutate. It has been almost 2 years after chemo and I feel like I am still recovering from it. Regardless, triplet therapy worked for me. I remain undetectable after 2.5 years after my initial diagnosis. May I recommend that if it is possible - stay active. Keep going to work. Have a purpose in life regardless of the Cancer. Eat a plant based diet as much as possible, do not smoke, do no drink (ever). Exercise and lift very light weights 3 times a week. Try and maintain some muscle.

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Thanks so much for your comments and advice. Did you continue Eligard and Nubeqa after triplet therapy or where you able to discontinue? Sounds like you have tackled your cancer even though you say you are still recovering from it after chemo.....fatigue and/or memory issues remain?
Making the correct decisions is very difficult for me, especially with two differing oncologist's opinions. I know it is a matter of "when" not "if" cancer returns given my Gleason 9. Even though Eligard has made my lung nodules disappear, cancer will reappear, no doubt.
I am retired but try to stay active. Thanks again for your story and advice. Much appreciadted.

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@jeffmarc

That test sounds like a great option. Either of those drugs Can make a difference. Darolutamide has fewer side effects and doesn’t pass the blood brain barrier so it may create fewer cognitive problems. I wonder if they take you off ADT because ADT does affect cognitive function or are they trying to figure out how much more disfunction there is with the second drug.

It’s triple therapy not triple chemo. It includes ADT, one of the lutamides or abiraterone and chemo.

If you get chemo, you can get a cap for your head that you can put in the freezer that will stay cold while you’re being treated and will reduce hair loss. Amazon sells them. Chemo is an easier than it used to be. Yes, there are side effects but for most people, they are not a major issue.

If you were a Gleason 7 then ADT alone would probably be the only drug prescribed. That’s what they did for me and it took 2 1/2 years before it failed, and I had to start on Biclutamide You are a 9 it could recur quickly without the second drug.

If you want to try to eliminate the cancer then chemo is the next best option? There is a disparity of thought that chemo should occur very soon versus later. If you are oligometastatic they usually want to do that chemo sooner. They want to bombarded those nodules that appeared to have gone away with the chemo drug and try to reduce them to nothing. Then there is the new option to do Pluvicto Before chemo, But you don’t have any visible metastasis, so it may not really help as much, it targets PSMA and your scan didn’t show any. You need to ask a doctor about this stuff, Why chemo and what they expect it to do.
.
You need to go to a different center of excellence capable place to get another opinion.

Have both of the oncologist that you’ve talked to been a Genito urinary oncologist? Those the ones that specialize in prostate cancer. Following the guidance of a doctor like that can really make a difference compared to just going with a medical oncologist. If you can’t find one come to the Ancan.org Monday meeting and you can get an answer about a doctor to go to in your area. 2 hour Meeting starts at 5pm pacific time, get there five minutes early and you will be first to be helped.

Jump to this post

Jeff, thanks for clarifying the terminology (triple therapy, etc.) The doctor recommending the trial is listed as a genito urinary oncologist and feels the chemo/triple plan is premature given the disappearance of lung nodules, with Eligard. The other doctor is a medical oncologist who urges the triple therapy now. My primary care doctor sides with the genito urologist - who will take PSA's every 3 months, stay on Eligard and take Nubeqa. I wasn't aware ADT causes memory issues (haven't noticed that too much) and adding Nubequa may complicate that. My foot neuropathy also complicates it all - don't want to fall, still drive my car, etc. and docetaxel may irreversibly cause neuropathy. Ugh.

Have you continued on ADT and biclutamide for a long time after the 2.5 years? Thanks for the tip regarding Ancan.or meetings. Is there someone there at the live meeting to give advice in addition to sharing Dr's in my area who may be recommended? Thanks again! Richard

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@rwski79

Jeff, thanks for clarifying the terminology (triple therapy, etc.) The doctor recommending the trial is listed as a genito urinary oncologist and feels the chemo/triple plan is premature given the disappearance of lung nodules, with Eligard. The other doctor is a medical oncologist who urges the triple therapy now. My primary care doctor sides with the genito urologist - who will take PSA's every 3 months, stay on Eligard and take Nubeqa. I wasn't aware ADT causes memory issues (haven't noticed that too much) and adding Nubequa may complicate that. My foot neuropathy also complicates it all - don't want to fall, still drive my car, etc. and docetaxel may irreversibly cause neuropathy. Ugh.

Have you continued on ADT and biclutamide for a long time after the 2.5 years? Thanks for the tip regarding Ancan.or meetings. Is there someone there at the live meeting to give advice in addition to sharing Dr's in my area who may be recommended? Thanks again! Richard

Jump to this post

I personally would go with the Genito Urinary oncologist. Medical oncologist don’t have enough time to keep up on everything going on with prostate cancer. They work on all different types of cancer so prostate cancer is just one of their things.

The thing is getting on ADT plus Darolutamide or Enzalutamide will stop your cancer from growing in almost all cases, and it could continue to reduce metastasis even more. Usually, you do not have a choice which drug you get In a clinical trial, and you will not even know what drug you get, in every trial I’ve heard of.

Ancan.org meetings have at least 3 experts on treatment, and have helped people for 15 years. You can listen to one of the meetings if you go to the website and get a feel for what’s going on. I’m sure they will also advise you to go along with a GU oncologist. There are always two or three other doctors in the meetings..

I’ve never had neuropathy of my feet with ADT and Darolutamide or abiraterone, I have felt a little swelling in my feet, but that is all. I know people that have had neuropathy so I can’t say it will not occur, It is not a frequent occurrence. The thing is, you need to get on these drugs, there are really no other options, If you want to have reduction and control of your cancer.

The memory issues are that you just can’t remember a name you can remember all the details about things, but the names are very hard to bring up. It does take some time before it takes affect. The deterioration of your muscles is even worse. You need to exercise daily, almost, at least walk daily and also go to a gym or use equipment like a gym.. I didn’t do it for a few years and could not get off the floor and after going to a gym for about four months now and I can get off the floor on my own, finally, but my muscles are really in need of improvement

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