Gentlemen, I can't tell you how much your encouragement and advice have meant to me. This site has truly helped me get through the struggles after my initial diagnosis and now I need your help again. I had my RP on 1/26 and now I need to make a treatment choice. As you all know, this is not like picking out a color to paint a room. I'm stage VI and my life literally depends on the choices I make going forward. This doesn't just impact me, it impacts my whole family. Anyhow, I've got two possible avenues to choose from.
The first one is a clinical trial at John Hopkins with Dr. Pienta. The trial is for men who have metastatic disease and who have had an RP. The treatment would be 2 years of Lupron injections every 3 months. Chemotherapy would start at the same time and would consist of IV infusions of Taxotere every 3 weeks for 4 to 6 cycles with daily oral administrations of Casodex. Six to eight weeks after chemo ends, radiotherapy would begin. Dr. Pienta said this should eradicate the disease. The only con is that I have to wait until I can get an 8-week post-op PSA and if that PSA is .2 or less then I cannot be in the trial. A couple of other things - 1) the trial is not free and I do not know yet if insurance will cover it. 2) even if I do get in, my treatment would not start until March 26th - almost two months from now.
The second option is Dr. Amato in Houston. This is the doctor who treated gourd_dancer (Mike?) who was diagnosed with stage IV 14 years ago and now has an undetectable PSA, normal testosterone levels, and has been off all medications for the last 7 years. Dr. Amato responded to my email same day and is wanting me to come this week or first of next week to see him. The treatment he used on Mike, and I'm assuming it would be the same, is Lupron injections every 3 months for 2 years with Casodex starting after chemo. Chemo would be Ketoconazole and Doxorubicin for weeks 1, 3, and 5 and Estramustine and Docetaxel for weeks 2, 4, and 6. No treatments during weeks 7 and 8. Not sure if radiotherapy is included or not.
There is my conundrum. I'm at a fork in the road and I don't know which way to go. I'm leaning toward Dr. Amato though because with him there are no precluding factors that would keep him from treating me and the treatments would start much sooner.
Dale, They both seem like excellent choices, however with the response GD had from Dr Amoto, It would be hard for me not to follow in his footsteps if I were in your shoes. Dr Amoto, Is IMO one of the very best. The fact that he contacted you right away, just like he did with GD says a lot as well. I wish you the best, Dan
There are peaks and valleys with this disease and hitting the window at the most opportune time is critical. That is when disease is weak and not castrate resistant. Sounds like that is where you are at now. Both options are aggressive so both are good choices. The good thing about chemo is it will get to cancer that both surgery and radiation cant. That would include circulating tumor cells. Your postoperative PSA may possibly come in at undetectable so don't rule that out just yet. I am for saving the radiation for a later date should it deem necessary. It is possible you may not even need it. Its always good to have a card left to play should cancer rear it's ugly head again. Amato is not afraid to step out of the boundaries and that is the type of doctor needed to beat this. He would be a great addition to anyone's team.
I concur with a systemic approach with Dr. Amato that will get to any stray terrorist cell lurking wherever in your body. I was offered radiation and deferred as I'd rather have chemos again - did 15 Taxotere sessions in 2015 and 30 months ADT (Lupron/Casodex) with last shot on 03/31/2107 and PSA now ticking up - but that was in the plans
Dale339, thatbis a very hard one as both seen agressive (which I favor). The problem I have with trials is that you are running a 50:50 chance that you will be in the control group. In addition, on a trial their focus is on the results, not necessary curing you. On the other hand, with Dr. Amato, his focus will be to keep you alive. For that reason I look to trials as more or less for use when everything else has failed. I am a bit surprised that neither is offering you Zytiga to go with the Lupron and the fact , at least for the trial, that they are saving radiation till the end.
Please know that my comments are from a fellow warrior, not a MD. There are probably plenty of people here that would favor the trial. For point of reference, my cancer was Stage 4A where it spread to the pelvic area. I have surgery, 38 rounds of radiation and Lupron with Zytiga added later.
In any case, welcome to the group! I probably should of started with that. Please know that you are part of our family. You will always have brothers and sisters to lean on here. Remember that people like us we have to stick together!
Dale339, I’d go Amato ,Personally ,I wouldn’t want to wait. At least you have choices. With a strong will to live and yes with some suffering.You should be a round for some time to love and enjoy your family. Good luck in riding this coaster!!!!!
Hey Dale:
Sorry about all the problems you are having and the difficult decisions you have to make. I read your post and if I understood correctly you have:
1- hormone sensitive metastatic PC
2- with local extension
3- lymph node metastasis in the pelvis
4- Negative standard scans (bone and I assume CT scan with contrast) (These test have very low sensitivity to detect metastasis and in today's medicine are probably worthless).
About your prostatectomy.
Most of the biopsies were 90% cancer indicating that the cancer was close to the periphery of the prostate and most of the biopsies had cancer indicating it was present in both sides.
Having these findings they went ahead with the prostactetomy without doing any imaging study such as multiparametric MRI, or some type of PET/CT scan to determine how much the cancer had extended outside the prostate and if there were metastasis or not.
If they had done a PET/CT with Ga 68 or 11C acetate, most probable they had decided not to do surgery. My understanding is that when biopsies show a cancer in both sides and superficial (more than 50/60 % of the biopsy positive for cancer) it is better to do imaging studies and then plan and execute radiotherapy with or without final radioactive seed insertion.
It is also my understanding that prostatectomy does not offer a survival benefit when compared with radiotherapy. I may be wrong since protocols change frequently and fast.
About how to proceed.
1- Most probable you need to have a PET/CT study, preferible with GA 68 PSMA to determine if there are metastasis beyond the pelvis or the lymph nodes and if the cancer is PSMA positive.
2- My impresion is that because of the local extension you need to have :
- Radiotherapy (IMRT or similar to pelvis and prostate fossa)
- Because the local extension and the lymph nodes metastasis you need to have ADT.
Recent studies showed that adding chemo or abiraterone (zytiga) to the ADT (with lupron or similar) offers a survival benefit.
it is not clear to me that doing ADT+Chemo is better than doing ADT+abiraterone.
There are clinical studies doing ADT with enzalutamide (look for prostate cancer and enzalutamide in clinicaltrials.gov).
I believe you have to discuss in detail with your doctors if doing ADT+chemo will be really better than doing ADT+abiraterone or enzalutamide. If they agree that there is not mayor difference in survival you could avoid the negative effects of chemo.
3- If you get a GA 68 PSMA (UCLA has a study) and
-your cancer is PSMA positive and
-after the radiotherapy a repeated GA 68 PSMA PET/CT show metastasis (if there were in other parts of your body)
- you could be a candidate for Lutetium 177 PSMA treatment which could be done in Germany or in the USA (look for prostate cancer and Lutetium 177 at clinicaltrials.gov).
In summary:
-ADT , since you are young please discuss with your doctor about using degarelix vs lupron because the cardiovascular problems associated with Lupron
- + Radiotherapy
- + Abiraterone or enzalutamide vs chemo.
Please keep up posted, best of luck and anything, please let me know.
Raul
Actually, I do not have hormone-sensitive PC. I was just diagnosed in early January (this year) and I had my prostate removed on 1/26. I'm getting my catheter out tomorrow.
Dale , Hormone sensative means you have not stopped responding to hormone deprivation, and considering that you have not done Androgen Deprivation Therapy (ADT) to reduce testosterone, You would still be considered hormone sensative until you fail ADT.
Raul has provided excellent advice. How far would you have to travel to see Dr. Amoto?
Ah, my bad. For some reason, when I read that my brain read it as hormone resistant. Thanks. For now, my next milestone is getting this catheter out! 🙂
in reply to
Overall, I agree with Raul's advice. I would always prefer a solid, proven treatament plan over a trial. Trial or tried? The goal of a trial is to a become a proven treatment.
Surprisingly, I'm doing much better. I did Kegel exercises all the way home from Atlanta. Once home, I sat on the couch and did them until I went to bed. Laying in bed and watching TV, I did them until I fell asleep. I got up in the middle of the night and went to the bathroom and I also got up this morning and went to the bathroom. I stayed dry throughout the night and I only had very minimal leakage when I got out of bed to go to the bathroom, so things are improving rapidly (thank you, Lord). I go back in two weeks to get another PSA and a PET scan. Hoping the PSA is undetectable and the PET scan doesn't show any metastasis to distant sites. Either way, since my disease was so aggressive and so extensive, I'm moving forward with aggressive treatment as soon as possible (starting chemo and hormone therapy).
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All The Best Wishes, 
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