I have been following this forum for a couple of years now, and have learned so much from all of you. But this is my first time to post...I knew this time would eventually come, but somehow it still caught me off guard.
Dad is now 75; he was diagnosed with stage IV metastatic prostate cancer December 2019 with high tumor burden of extensive bone and lung METS, despite feeling decent. We were told his cancer is "aggressive and advanced." He trialed one round of chemo with Docetaxel but had too many side effects to continue. He started and continued monthly Firmagon for 6 months; then took one year of ADT vacation. He then started estradiol patches in July 2021, which worked til about January/February 2022. His PSA has always been relatively low; at diagnosis it was just 4.96; and currently with radiographic evidence of disease progression it is at 2.0 and not increasing rapidly (which I understand is not necessarily a good thing). He just had repeat scans done on May 6, 2022 showing "widespread progression; increase in size and number" for both bone and lung METS, with his PSA still at 2 and testosterone at 6. The MO didn't come out and say it, but I gather we are at castrate resistance at this point. The MO offered basically 3 treatment options, as Dad states he really is not interested in considering any additional attempts at chemo:
1) Zytiga + steroid and stay on the estradiol patches
2) Referral to radiation oncology for Xofigo (or similar drug?) and stay on estradiol patches
3) Sign up for clinical trials in Denver (we live an hour north of Denver, CO)
As far as staging, this is what I can find in his medical history:
His mutations are: PIK3CA, PTEN, and RAD21; the MO stated this means he is not a candidate for Provenge or a PARP inhibitor. I tried to put as much of his info in my bio as well.
We meet with both radiation oncology and the MD over the clinical trials tomorrow. I don't yet know which clinical trials are available in our area that he would be a candidate for. Not sure what to do at this point. Dad looks to me to advise him on next steps, and has from the beginning; I'm happy to do it but also terrified of making the wrong decision and costing his life, as I understand that sequencing of treatments is very important at this stage. Dad has survived 2.5 years with minimal treatment, so I suppose we are quite lucky he is still with us and doing well given the severity of his disease. He has very little pain, which baffles the doctors, but he is taking 3 capsules of an RSO/CBD oil cocktail every day for pain management and it seems to be working wonderfully without side effects. I have a 4 year old son who adores him, and just had another baby boy 11 weeks ago...I really want their PaPa to be around for a couple more years with halfway decent QOL if at all possible.
Any suggestions, advice, encouragement is greatly appreciated.
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Bmvg02
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You've really helped your father a lot with his disease and there is much more to come as the disease changes. A few suggestions:
(1) I see you've biopsied tissue for genomics. But I recommend you discuss another biopsy for histology and IHC. You may have to send the tissue to the Wang Lab at Duke. The IHC analysis might include (depending on the amount of tissue): AR (androgen receptor), PSA, PSMA, MSH2, MSH6, STEAP1, PD-L1, chromogranin A (CGA), neuron-specific enolase (NSE), synaptophysin (SYP), DLL-3, CD56, Somatostatin (SST)
(2) I understand why a PARP inhibitor is useless, at least as a monotherapy. But I don't understand why you've ruled out Provenge. In fact, combining Provenge with Xofigo seems to be synergistic
(3) I understand why your father wants to avoid chemo, but in the following trial, they were able to lower the dose from 75 mg/mm2 to 60 mg/mm2 by giving Xofigo also:
Thank you for your reply. As far as I know, biopsy for histology has not been done so I will ask the MO about this. I had hoped dad would be able to try provenge but the MO is saying he is not a candidate but hasn't indicated why...could it be the high tumor burden or the lung METS? Dad feels decent and does not seem to be very symptomatic at this point, occasional pain but reports it is very tolerable. Dad also saw the radiation specialist today (I was unable to accompany him to that appointment), and dad stated the radiation specialist suggested not to go forward with xofigo because it would do nothing for the lung mets. I am really getting frustrated because it seems that I cannot get any real guidance from the MO as to what is the best next step. He just gave us those 3 options (zytiga versus xofigo versus clinical trial) and told us to pick one by our next follow up, which is May 23rd. It seems he is offering these options mutually exclusive from one another as well and I do not know why because I have heard of men combining therapies for treatment. Because dads cancer is so aggressive i feel the need to make an informed decision ASAP, but it just seems like all of the doctors/specialists are just telling us what will not work versus what would be most beneficial to try next. I feel I am coming up with more questions than answers at this point. I have heard of the jevtana versus taxotere so I will bring that up with dad again, thank you for that suggestion!
It's true that Xofigo will do nothing for the lung metastases. And usually, insurance will not cover it if there are metastases in any organs. But if his MO recommended it, he probably will write it up to talk only about the bone metastases.
If he starts on Zytiga now, he will qualify for Pluvicto when Zytiga fails. (His bad reaction to chemo qualifies him)
I would guess your Father already received Salvage SBRT? I'm not sure how far you can continue to go with SBRT but spot detection and treatment, especially using the new MRI Realtime Guided (Viewray MRIdian) might possibly still have use? A couple articles I read recently that may be of interest:
Complete PSA Response Following Stereotactic Ablative Radiotherapy for a Bony Metastasis in the Setting of Castrate-Resistant Prostate Cancer
Stereotactic Body Radiotherapy for a Sacral Metastasis Clarified by Diffusion-Weighted Whole-Body Imaging With Background Body Signal Suppression in a Patient With Castration-Resistant Prostate Cancer
Thank you for the suggestion/information. Dad has never had SBRT. It has never been suggested by his MO. At diagnosis his cancer was already stage 4 with extensive bone and lung mets and his MO is seeming to suggest that his treatment options at this newly castration resistant stage are very minimal, although over the last 2.5 years he has only had the following treatments: one round of docetaxel, firmagon injections, estradiol patches, and focused radiation to a large bone met on his hip for pain relief. I really just do not know what we should do next as far as treatment options, maybe time for a new MO, but this is our 3rd one and it is frustrating searching for one that will give us the guidance we need right now.
Yes as T_A pointed out there is no reason not to pursue Provenge as he qualifies for it being reimbursed. Can be synergistic with Xofigo Ra223 if he decides to go that route. But is clearly beneficial on its own in the “real world” experience. Essentially no side effects with it. Zytiga plus low dose prednisone would also be a good possibility at this juncture and does not diminish QOL in most patients.
Every time I see the word LUNGS my Keytruda button lights up. I fought my Lung melanoma with Keytruda and I think I'm ahead of the game. (Notice, never say won..... you only won when you're done).......
Thank you for sharing this pearl of wisdom! Researching keytruda for PCa now and will bring it up to the new MO during our consult next week. I'm so thankful to learn of potential new treatments that I otherwise wouldn't have thought to research!
Immunotherapy is the wave of the future....... many members have tried it with some success. Do a search on "immunotherapy" from your home page. If you don't know how to do a search, let me know.....
Thanks for sharing and fighting with your father. It must be difficult as you are supporting your young family. Stay strong but I hope you find some time for you!
Thank you for the kind words. I try to stay as strong and as positive as I can for my dad and for my boys, but it is hard some days, and sometimes I do feel fear creeping in. My dad is the real superstar and I strive to be like him...even faced with aggressive stage 4 Pca, he exudes faith and positivity. I hope and pray treatments continue to advance to longer survival and better QOL for all men facing advanced disease.
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