Four years on and grateful for that. Enzalutamide stopped working earlier in the year. PSA doubling. Lesion in spine led to pathological fracture and some pressure on the spinal cord. Radiation to spine and pain relieved. Docetaxel started but discontinued due to severe allergic reaction. Nothing for a a few months apart from Degaralix and zolendronic acid. Developed heart failure which is now well regulated so oncologist looking at options. Seems only Carboplatin. Olaparib out as no faulty gene. Radium 223 out due to lymph involvement.
I’m feeling better than I have for some time so balancing feeling grim with chemo for no guaranteed benefit or accept that’s it and concentrate on QOL. Oncologist moving away from PSA monitoring to responding to my symptoms That will need a cognitive shift. I’m starting the discussion about end of life care with GP so that things are ready to go. My only frustration is that if I have chemo, the pathway for neutropenia is visiting A&E Having already spent many hours waiting, I’m not sure I want to go through that. Perhaps I’ll give carboplatin a go nonetheless. Still feeling blessed and grateful and finding magic in the mundane.
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FortyWinks
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As this article says, "It is FDA-approved for castration-resistant men with painful bone metastases, who do not show evidence of visceral metastases on a CT or MRI (lymph node metastases are allowed)." prostatecancer.news/2021/02...
Always defer to your encylopaedic knowledge of PCa treatments.
Sadly in UK however, where FortyWinks is, Xofigo is only available to patients who fit NHS parameters set by UKGov. No arguing with UKGov right now, as they are cash strapped.
My dad did qualify for NHS Xofigo, but then regrettably broke his leg, his health tankted, and he's been put on palliative care. However, I was at Dad's consultant meeting where they discuseed guidelines for Radium 223 use in UK, and they are strict. Will only give Xofigo if limited to bone mets.
NHS interpret guidelines strictly. Not because the consultants don't care, but because the NHS is broke (due to UKGov defunding) and because all NHS regions say Xofigo is used to treat "bone mets" "after chemo and ADT" have failed, that's what NHS consultants have to stick with. No room for interpretation with NHS. You can try private care in UK and see if they interpret differently, but NHS consultants stick with above. This is where my dad was supposed to be treated. NHS will only use Xofigo for PCa bone mets.
You or they misunderstand the issue. Xofigo only treats bone metastases, but the question is whether NHS will allow Xofigo for patients that have both bone metastases and lymph node metastases. The indications that NHS accepts, only precludes its use if there are visceral metastases present, not lymph node metastases.
Maxone posted this clinical trial today. Might be worth discussing with your oncologist. It's a big roll of the dice as phase 1. In London but will also be in Cambridge. Otherwise, have you been checked for a BRCA2 gene or any other genes. I would ask them to check for more than BRCA but may need to go private. Important discussion with your oncologist.
Thank you. Will look at gene testing again. I live quite some distance from most research centres so trial have not been on my radar. Will check this one out though.
Thank you, good to hear that has helped you. As it happens, I’ve got a telephone appointment on Monday to start the process. I will feel more confident once I understand what’s available and that I can tap into it when needed.
Good for you and remember they work for “ you “ lol. If you don’t feel physically comfortable enough, don’t delay / be shy about letting them know. You or your wife’s/ partner’s head feeling stressed or bummed out, let them know. Their one and only sole job is making your life the best it can be. They have a BIG toy box of resources and personnel to get you there , they are experts at helping. They do it many times a day …. pancreatic cancer, breast cancer. Etc …. They know how to make you smile and feel pretty good. Hit them up, get those guys to work on you for a change. My palliative Dr crushed my worse head game from Kaiser. Kaiser literally hates handing controlled opiates and will put every roadblock and delaying tactic in your face , every month. Over and over and over. I hated wondering if I would spend the first few days of every month being blocked by Kaiser and spending several days writhing in pain or withdrawal and anxiety. It was very demoralizing - depressing. Pallitive care kicked that problem to the curb in impressive style. No worries any more, no more days of withdrawal. Smooth sailing now. All of this damages my wife’s head / emotions. What wife wouldn’t ? They literally “ jumped “ at the opportunity to help her too. Nolo problemo. None of us 4s have any illusions ( most anyway ) , no need to suffer en route lol tho. Just say’in.
Your description of Kaiser and opiates is perfect. Could not agree more. I was fortunate to be referred to the Kaiser Oral Chemo pharmacy group. They follow me very closely, call regularly and knock down the barriers for pain control as well as overall health issues. Top Notch! It's all about QOL.
My palliative care and hospice are both covered by my government insurance policy by Kaiser. Was DXed to hospice when first found. But been able to back out of hospice to palliative since being DXed due to good performance on Lupron Xtandi.
I still pay about $200 a month in retirement. My nearly 6 years cancer care at Kaiser has cost them slightly over $1,000,000 usd , so far
It’s old government “ high option “ standard medical similar to mail handlers. Differences were deductible and how much dental, hearing aids or not etc. I’ve sometimes got a $15 co-pay on a few things. OPM stopped offering it several decades ago. When I retired I was one of the few people , in the V.A. , that still had it because I was on the old retirement plan and did not convert over to the 401K system when it was optional. I think I have some Medicare too but I’ve never used it fars I know.
we are all going your route, after 26 years I am now close behind you. When I get to the point where there is no quality of life left, I will depart as palliative care in my book is just a big coffin
Rock on until you cannot ! Then it is ok to stop in your terms not the cancers making the last call!!
We have a plan. Like friends have done. Two bottles of Cointreau, some good pain meds (saved since major orthopedic surgery) and “Geronimo” off the rear of a very big ship. Yippee!
Costs too much to get on a very big ship. ( I'm taking a cruise in Dec. Ouch.) And I refuse to be fish food. Think I'll watch Jaws tonight. I already got a king size bed. To dream, to dream, that's the rub. Or a nightmare. OMG. It's j-o-h-n! And Dolly!
How about Cabazitaxel ? I’ve had Docetaxel 9 years ago and now on the other one . Must say less side effects. I also got metastases in my lymph nodes . First PET psma scan after three sessions was positive , some tumors shrunk and no new ones , psa and af going down .
Thanks for sharing your recent history. You have battled hard and through so much. Stay strong. I loved hearing that you find magic in the mundane. Keep up that positivity and joie de vivre.
I'm not sure what your allergic reaction was like with docetaxel, but I had a very difficult time getting through my treatments. On my first treatment, 5 minutes in my face went flush, heart rate and blood pressure rose quickly and the muscles in my back started hurting intensely. They stopped the treatment immediately and gave me more steroids and morphine. After 30 minutes, they started the chemo back at a much slower pace/drip. This went on all 10 of my treatments, but by the 3rd one or so we had a system worked out. My chemo was started at a very slow pace about 1% for 15 minutes, then increased to 10% and then I would have my reaction, though more mild. Morphine was already on hand and after 30 minutes, the chemo was started back at 10% then increased to 50% for the rest of the treatment. What should have taken about 2 hours took me about 5 1/2 but I was responding and my PSA went from 17 down to 1.6 so it was worth it to me. I only had my allergic reaction at the beginning of treatment, after the reaction and break, once treatment was started back I was fine.
Immediate reaction much as you describe. Stabilised and continued at a slower rate. All given. Second time, same reaction. The protocol for me was to stop and abandon docetaxel. Sounds as if things vary. My understanding is that it is the drug medium that causes the reaction for some. Thank you for sharing your experience.
I'm sorry you had that experience. I was told something like that as well. The agent mixed with the docetaxel caused the reaction. I was so doped up after the reaction that I felt like I was at a Pink Floyd concert.
In the UK, emergency hospital care is through the Accident & Emergency department. You wait along side major trauma, heart attacks, strokes and children with a pea up the nose. I guess that pretty universal. Monday to Friday 9 - 5 we have a service called Same Day Emergency Care (SDEC) that our primary care doctor can refer in to. Still some waiting buta much better environment and care. I just need to make sure I don’t get unwell at other times.
If you still have enzalutamide and would go to Xofigo, you could try to take enzalutamide again with it as following link suggest.
Look for: "Second-line hormonal therapies
It has long been known that androgen deprivation therapy (ADT) sensitizes prostate cancer cells to radiation therapy. Could a more powerful type of hormonal therapy work even better? ..."
Thanks for sharing your path at this time. There's benefit from reading about your experiences, even though I'm not at that point. I admire the way you're handling it, and I wish you the best.
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