My husband's next oncologist appointment is tomorrow. PSA is at 74. It has been a roller coaster ride since March 2017. Prostate removed with many complications in hospital. Was there for 2 weeks, which should have been 2 days. Was weak for several months after. Follow up appointment 3 months later and PSA was .045.Urologist said radiation wasn't needed. Since the Urologist was a 4 hour drive in London Ontario we changed our Urologist to 1 hour away. That was a big mistake. He didn't seem to care and he took my husband off Eligard saying it wasn't needed. Husband's PSA kept rising, slow but sure. Urologist still didn't have a plan. We fired him and went with another Urologist who starting the ball rolling on a plan, including recommending an Oncologist. Now we had a specialist that cared and a bone scan and CT scan were order. Cancer had metastasis to the bones. Husband was put on Xtandi and his PSA started going down after a month. He was stable for 15 months. Xtandi stopped working. Chemo was next. He had 10 sessions. Some side effects, otherwise handled it pretty well. Cancer was stable for 4 months. He did have a few sessions of targeted radiation. PSA started climbing again and next was Radium 223. Cancer stable for 3 months. PSA started climbing again. He was put on Abiraterone along with Prednisone 4 months ago. PSA is rising each month. So Oncologist said two options left, a clinical trial she is trying to get him in at Princess and hospital or Chemo. She hopes a trial is available and if he qualified for it that would be the next step. If not, it's Chemo again, 10 sessions.
We are hoping and praying for a clinical trial, even though it would mean traveling 2 plus hours each way.
Sorry for long post.
Just asking for your experience in any clinical trial from a very concerned wife.
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Docker53
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I agree with a doctor, but I think you have more options. I am not sure if that is suitable for him. It is a good discussion with the doctor, and we go from there.
1) Is he qualified for Pluvicto?
2) Get a PSMA PET Scan and find the top 5 largest mets and radiate them and reduce the risk immediately
3) Debulking surgery removes the tumors as much as doctors do and immediately reduces the risk.
4) He did tell you to do another round of chemo that is actually "cabazitaxel." I think it has good outcomes as well. Do not have side effects in comparison to Docetexal
5) Can he participate in AMG 509 clinical trials? This is immunotherapy, and it has also produced good results.
6) Participate ADC Clinical trials
7) After Chemo, he started Abiraterone; he could start Xtandi or Nubeqa again. There are many studies available that it can fly back after chemo.
Thank you so very much for your response. It is great advice. I have heard good things about immunotherapy from others. This is the trial we are hoping Princess Margaret will accept him.
He did have genetic testing and all was good.
We will post the clinical trial recommendations from the Oncologist after our appointment withher tomorrow.
He had a bone scan and CT scan a few weeks ago and the results were posted on line on his My Chart. Bone scan showed some new activity in ribs and spine, however CT showed no new activity and all looked good. Showed no change from his previous CT scan back in March.
I'm hoping that he can go back on Xtandi again because it kept him stable for over 15 months.
Possibly, the chemo after Xtandi reset sensitivity to it- it may be worthwhile to try again. Or combine with Jevtana. I don't think Canada has approved Pluvicto, but if his cancer is only PSMA+, he may be able to get it on a clinical trial. But he has already had a lot of radiation from Xofigo, so that is a consideration. Let us know which clinical trials they propose.
Docker53 - I read all your posts and your husband's medical bio. It's kind of overwhelming. Seems to be a urologist-driven (at the beginning) "one thing after another" approach. I didn't see a clear path based on the big clinical trials - and yet you persist to find the best way forward yourself. More strength for you! I will offer my prayers for your success together to stabilize and tamp down this assault on your husband.
So sorry for all your problems. Your case sounds a lot like my husband's. Complications from surgery (2014)--11 days in hospital with acute kidney failure, months of recovery due to arrogant surgeon and missed dx for seroma followed by muscle loss and weakness....as well as not being told to be vigilant since he "got it all." That gave my husband's PCa 4 yrs. to get a stranglehold on his body until 2018 when a kidney stone led to ER and dx of 1st recurrence. Switched doctors/hospital with specialists . 1st put on Lupron shots and PSA went down slightly but not enough so Bicalutamide was added...also didn't help and scans showed mets to bones. Was sent to Medical Oncologist who gave options...chose Xtandi+Lupron due to fewer side effects for his heart. MO told us that the drugs work until they simply don't because the cancer eventually outsmarts them all. Xtandi worked from then until late 2022 when his until then undetectable PSA started creeping up, but during those years he suffered many side effects---edema that led to 2 night hospital stay on IV diuretics, restless leg syndrome, extreme fatigue, etc., so his dose was constantly being adjusted up and down. The PSA started doubling and tripling and the MO offered chemo, radiation and/or bisphosphonate therapy but after questioning her said they'd offer only a few more months and could land him in the hospital. He stopped all treatment at that time because the SEs were worsening and he was done. The MO provided a prognosis then of about 1 yr. w/o treatment and after palliative and hospice care, died this past April. A lot depends on your husband's tolerance level to various treatments and what he's willing to endure for an unknown amount of time. We already had Living Wills in place and decisions made when he had been feeling better but knew what would eventually come. His last year in home care with me were made much more comfortable with the help of the palliative/hospice team members, better drugs, no more doctor/hospital visits and family nearby. Was it hard? Absolutely....hardest thing I've done/experienced....but I wouldn't trade it for a hospital and strangers. My husband was 78 and he knew that all the treatments offered at the end would not change his dx and made his choice so he could have control and not keep feeling worse due to treatments and their multiple side effects. There were never any easy decisions during his cancer treatment, from surgery on, but I told him I would research and monitor everything, including all tests/scans/bloodwork results/meds and doctor appointments, and be honest with him about it all, but all decisions in the end would have to be his with me supporting anything he chose. He made his choice and I helped him all I could to achieve what he found comfort with. I don't know if any of this helps you but you and your husband need to do this together. God bless you both!
Thank you. First and foremost, I'm sorry for the loss of your husband. I can't imagine. God Bless you as well. Like you were, I intend to be with my husband to the very end. He will be 80 in January. We are in this together.
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