Husband PSA up from 1.2 July 24 to 2 Nov 24 to 3.8 Jan 25.(See bio) Bone scan and CT in July 24 showed nothing much but Jan scans now showing mets to one rib, pelvic bones and femur - possibly spine too as he has had 2 compression fractures in 6 months. On abi/pred plus decapeptyl. Had spinal MRI yesterday no results yet. So the next tx here (UK) is chemo. Pluvicto not available until after chemo and this would be out of pocket. RA-223 they will only do after chemo and not alongside (funding rules I think). not BRCA so cannot have parp in UK. Question is whether he goes for chemo. His bloods are apparently not great but good enough for chemo. He is very frail. Has cognitive issues with very poor short term memory and slow processing and this is progressive too and getting worse. He is mobile but walks with difficulty.. He is very fatigued and dozes a lot. His one joy in life is his baby granddaughter, though he only sits here of his knee. He has a phobia of vomiting. So chemo potentially could mean 6 months of difficult QOL. - no hugging the baby and more fatigue likely. Onco says median gain is 3 months extra survival - though I'm not sure where that stat comes from. Of course it's 3 months on top of unknown. He has no pain right now, but life's not great. So, to do chemo or not is a tough decision. He is looking to family to help I think as he can't really process the decision. I am aware that chemo can help pain but that's not where he is right now. He is not of an 'anything to survive' mindset. He is 78 . He is getting PET/CT of brain soon to see what might be causing cognitive decline. I am minded to wait for results before he decides chemo or not. One question I have is - If he goes for a couple of cycles and stops due to SEs is that a problem? Would it hasten progression or not ? Also if no chemo he could still maybe have radiation to any subsequent painful mets? Thanks.
Chemo decision with QOL concerns - Advanced Prostate...
Chemo decision with QOL concerns
Oh my! My heart goes out to you!
He can have radiation for pain. Sorry I can not help with chemo questions. However here are some other thoughts.
Since I am almost 80 and have cancer like your dad, I have removed the burden on my family by making my wishes known so they are relieved from any guilt.
They will just carry out my wishes. This really has made the process for them easier and hopefully quilt free since it is what I wanted.
1. Have you looked into palliative care and hospice. Now is the time.
2. Have you asked him directly if he wants the extra 3 months?
3. Does he have an advanced medical directive and does he have a preferred burial option which expresses his wishes. Who in the family has the medical power of attorney? I had to choose this person carefully and made sure they would adhere to what I told them to do in the legal document. I also told the other family members so they understood my wishes.
Wishing you the best. Honest straight forward communication is critical at this point but not easy. Palliative/hospice can really help you and the family through this process.
Thanks so much your your thoughtful reply. Myself and his sons have POA. We have discussed with him the issues but he finds it hard to retain and process. Some days more so than others. I will begin to look into palliative care - I fear it might not be quite as extensive here, but a lot depends on ones individual health authority. I will be fighting for him all the way. Wishing you well in your own journey. X
If you haven't read the book Being Mortal I would suggest you do that. Makes sense of palliative care etc.
Hi "PF". I read your husband's treatment bio, slowly. And then noted that you have participated here for 5 years with 17 posts and almost 300 replies. It's a whole journey of almost 10 years. And your husband gets to hold his baby granddaughter on his knee! ❤️
If I understand everything correctly, your husband has had (possibly treatment-derived) heart issues, and (possibly treatment-derived) escalating cognitive issues. Dang side effects! ("SEs") Your journey seems to have been very deliberate and with careful decision making. (In my own experience I have learned that information on side effects is not so easy to understand - in part because individual responses very so much I guess.)
I hope that some of our esteemed colleagues on this forum will be able to contribute hopefully in answering your new questions about chemo. Strengths for you and your husband on yet another decision!
Thank you for such an empathetic reply. Yes, we are in a tough place decision wise because of his cognitive condition and also I admit partly because he has relied on me to engage with treatment - I guess some people just find that better for them. But I have kept him going so far with several battles with the NHS (which I love dearly btw) . This forum is so helpful. Its helped me to look in the right places for information our consultant is a bit reluctant to impart. Best wishes to you in your journey. X
If you can travel back and forth to the Netherlands 11 times (or get an AirBnB near the site for about 30 weeks), he can get a reduced dose of docetaxel with a full dose of Xofigo. I think the drugs are free on the trial.
clinicaltrials.gov/study/NC...
Nausea is seldom a problem with docetaxel with modern anti-emetic drugs.
Thanks for your reply. Looks a well powered and interesting trial and I hope others on here can make use of it. Sadly, husbands health status rules out that kind of travel I'm afraid. We wouldn't get insurance for travel but in any case he just couldn't make that journey. Do you have a view on trying chemo and stopping? Can it exacerbate the progression or could it be worth a try in your view?
Stopping chemo is not a problem, and the oncologist can give him lighter, more frequent doses, if necessary.
Good morning. I too am UK age 78, slowly rising PSA., currently off ADT but due to restart soon (will want HRT not ADT). I can see all the difficulties and note your specific questions. And just to be clear I also put QOL ahead of longevity.
First your husbands general health sounds poor and ADT is implicated in cognitive decline and increased risk of dementia. Chemo might exacerbate that.
Your oncologist will be focussed on managing his prostate cancer and perhaps not in best position to give a holistic view . Your husband is looking for support to make the right decision and will perhaps be frightened and worried not just for himself but for you.
Taking all that into account, could I suggest that you ask for a consultation with a palliative care doctor to help you both decide the best way forward. The evidence shows that combined care and decision making involving both doctors not only gives better QOL but also longevity. Your husband from the sound of it does not really want more treatment but does not want to let you or his family down.
From what you say, it sounds as though your husband will not want to spend what time he has on trips to hospital, side effects, tests and clinic appointments when he could be spending that time with family. Let me know what you think?
Thanks for this. I think your last point in particular probably is correct, but it's just hard for him to make judgements because of his cognitive decline. His answer may vary with his state of mind. Pretty sad given he was a University lecturer. But we will carry on trying to discuss with him. Great idea to talk to palliative care - I will follow up with the GP, though goodness knows what the wait might be! I'll let you know what happens. Thanks and best wishes.
Just one last thought. Has he written out an advance directive or previously given any indication of what he wants in terms of intervention if he is declining and unable to decide for himself?? Given his cognitive state this could be important .
Thanks . He has a POA health in place which we both did a couple of years ago.. I'll look up exactly what he put in this. It might be a way in to talk about things again and he can amend while still competent if he wishes. I will look into other advanced directives . Thanks for the reminder.
Great. And take it with you to see GP and consultant.
My experience with chemo was pretty rough and I had it when I was 55 years old, I had 6 doses of docetaxal. Perhaps you could look into SBRT since it appears the number and location of mets seem like they can be easily targeted. SBRT is by far the easiest treatment I’ve undergone and I am heavily treated.
Ed
Thanks for replying. I think it's a great idea. If it's a no to chemo (and after a few discussions I think we are swaying that way) then this would be a potential big help with bone mets and any pain. We are also looking at a switch to dexa from pred to try for a bit more out of Abi. I'll let the forum know what is decided and how things go. Many thanks and best wishes Ed.
My husband is same age. PSA was under 10 but developed bone Mets. I know everyone here says to do triplet but he was put on doublet for the last year (Lupron and Erleada—apalutimude) and it seems to be working. Mets are shrinking and PSA reducing. This might be easier on your husband given the other conditions. Obviously I am not a doctor or claiming to have all the answers, just sharing our experience. Three MO doctors ageeed with this plan. We have also found infrared heat is very soothing—via a mat or sauna. Good luck.
My Heart goes out to both of you.....Remember God is on your side....
Good Luck, Good Health and Good Humor.
j-o-h-n
Hi;
Assuming Docetaxel the the chemo to which you refer, nausea usually isn't much of an issue. Fatigue, possible neuropathy in hands and feet (can be mitigated by wearing iced mittens, socks available on Amazon) hair loss, loss of taste. The side effects can take 3 -4 doses before they manifest themselves. The doses can be diminished by you MO. Stopping causes no harm.
Good luck!
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