Good morning, I am new to this forum and am thankful for having found it. I am trying to learn as much as I can about my husband’s diagnosis and pray that we are making the best decisions for his treatments. To this point we have not sought out a 2nd opinion and have wholeheartedly trusted in the treatment regimen he has been on. But now there are new decisions to be made and it is overwhelming. I would be so appreciative of any feedback I can get from all of you who are also fighting this fight.
My husband’s cancer journey began in April 2019 when he began to experience urinary issues. 57 yo with initially high risk cT4, cN1, cM0, Gleason 8 (4+4) prostate adenocarcinoma with pre-treatment PSA 58.8 and 11/12 cores positive. Started on Firmagon/Xtandi ADT in 08/2019 with the Firmagon being changed to Lupron shortly after. He was treated with a course of external beam radiation therapy 79.2 Gy in 44 fractions to the prostate, seminal vesicles, and pelvic lymph nodes, completed on 03/30/2020. PSA began to climb back up 07/2020 to 0.88. CT Scan and Bone Scan done on 07/30/20 were good compared to December 2019, “ interval decrease in size of previously seen borderline enlarged abdominal and pelvic lymph nodes, now within normal limits for size, consistent with favorable response to therapy. Overall, NO EVIDENCE of nodal or metastatic disease involving the chest, abdomen, or pelvis on the current scan”. However next PSA check four months later, on 11/24/20, showed PSA of 8.12 so the doctor ordered another CT and Bone Scan which revealed increased uptake in the left posterior acetabulum, the left ischial tuberosity, and the trochanter of the left femur, all suspicious for metastatic disease. There was also an indeterminate small focus of increased uptake in inferior sternal manubrium which the RO said she wasn’t as concerned about because it didn’t appear on the CT. So after a visit to the RO, we were told that SRT is not an option because of the location, however palliative radiation would be an option to alleviate the pain (which he has a lot of in that hip).
So now finally to my question. My husband is scheduled to begin a round of Immunotherapy (Provenge) which is scheduled to begin tomorrow (2/2/21). After which, his doctor is proposing either of the following two treatments. (1) Blood was drawn to see if he would qualify for a clinical trial involving a drug called Niraparib as follows: A Phase 3 Randomized, Placebo-controlled, Double-blind Study of Niraparib in Combination with Abiraterone Acetate and Prednisone Versus Abiratone Acetate and Prednisone for Treatment of subjects with Metastatic PC. (* What concerns us about this treatment option is the placebo element). If he does not qualify for the Clinical Trial or if he chooses not to participate in that, the 2nd treatment proposed is Radium 223 (*Question here is; being that this drug goes directly to the bone, and that is where the metastasis seems to be at this time, would this be a better option at this time?) It is our understanding that if the Clinical Trial drug does not work, we can always go to the Radium next, but not the other way around. It was explained that the intent of the Clinical Trial was to determine if the drug was effective as a first line of treatment before Chemo and others.
I apologize for the long entry, just wanting to include as much information as I could. We are not sure how to proceed and I guess it all boils down to if he even qualifies for the Clinical Trial but then wondering if Radium 223 is the next best choice or something else. Wondering if we should also seek out a 2nd opinion from a Cancer Center. Thank you all and I wish everyone well in this journey.
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Doradart
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You wrote that he took Firmagon/Xtandi ADT. So apparently Xtandi stopped working because of the rise in the PSA value. There is a cross-resistance between Xtandi and Abiraterone, so Abiraterone will not work well following Xtandi. Therefore I think this trial is not a good alternative. Probably they will exclude him anyway because they are aware of the cross-resistance.
So you have to choose Radium/Xofigo. This treatment does not lower the PSA value. You may have to get a Chemo first.
Niraparib could help with the control of the cancer if the cancer has mutations such as BRCA 1 or 2, ATM , CHECK 2 , PALB etc. If these mutations are not present most probable the cancer will not respond to Niraparib.
Before doing Xofigo, you could discuss performing an Axumin or a PSMA PET/CT scan to be sure there are not lesions outside the bones. Xofigo will treat bone metastases only and it is not indicated if there is evidence of visceral metastases.
1) PARP inhibitors only seem to be effective in men who have the BRCA mutation. I assume he has had a germline test of it by now, but he can still have a biopsy with one of his bone metastases genomically tested. If he does have a somatic BRCA mutation, niraparib is a good idea. However, if he has a BRCA mutation, he can get olaparib or rucaparib without chancing a clinical trial.
2) Xofigo is certainly a good idea. Perhaps email the following links to the oncologist for his comments.
d) However, there is a safety concern if combined with abiraterone or enzalutamide. That combination should not be used outside of a clinical trial, where a bone-strengthening agent must be used with it.
e) if you are near Johns Hopkins, there is an interesting trial of Xofigo and BAT. BAT may slow down cancer in the lymph nodes in some cases, and Xofigo only works in bone, of course. So the combination may be complementary (if it works at all):
As a Stage 4 metastatic prostate cancer patient, I hope you will go get a second opinion. I have two great doctors and it has been a huge blessing to get the opinion of two doctors prior to trying to decide on the various treatments required to contain the aggressive form of the cancer that I seem to have.
The treatments you have described so far seem reasonable given my own experience over the past 6 years (diagnosed at 54 years), but I think you would serve yourself well by going to one of the research focused centers. My second opinion doctor is located at Memorial Sloan Kettering in NY. There are other research centers across the country. I haven't had Provenge but am getting ready to start a PARP inhibitor similar to niraparib but I had to have genetic testing of my biopsy to verify that it has a genetic mutation such as BRCA - as others have said if your tumors don't have a genetic deficiency this type of medicine won't be effective. I started out on chemo and Lupron when first diagnosed and have been on Lupron the entire time. I used Xtandi and had radiation and this knocked down the PSA for more than a year and then I did the Radium 223 treatments after PSA started rising again. It bought me about a year before the PSA started rising again. I didn't have many side effects from the Radium but I realize we are all different. I would be glad to talk to you or your husband and share any information I can offer, but I have been impressed by the information that this site can provide. God Bless you on your journey!
The MAGNITUDE trial of niraparib + abi + pred I understand has had the blind lifted and all participants get the niraparib. The only authority I have is my oncologist who has just enrolled me (in Australia) and he assured me of that. Check with your onco on this. Very recent news. As others have said, BRCA mutation is necessary.
Strongly recommend 2nd opinions. You may choose most any MO whether in your system or not. Nothing to lose. They may just reinforce your present course or suggest better alternatives.
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Good morning. First and foremost I want to thank everyone who responded to my post. I am grateful to all of you for sharing your knowledge, insight, and personal experiences and for your recommendations.
George completed his last Provenge treatment last Friday. He tolerated the treatment very well except for the expected fatigue.
We received the results of the Diagnostic Genetic Testing and George does not have a BRCA mutation. The Invitae Multi-Cancer Panel test evaluates 85 gene(s) for variants. The test did identify one Varient of Uncertain Significance in the PTCH1 gene.
We are scheduled to meet with MO tomorrow to find out what comes next. We understand that PARP Inhibitor treatment is no longer an option as there are no BRCA mutations. I am assuming that Xofigo is what will be recommended as the next course of treatment.
Before starting on Xofigo, are there any other tests or any other treatments that we should discuss with George's MO tomorrow?
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