I have never actually asked the MO how long, because I know the answer. Every patient is different, it’s in Gods hands, hard to say with new treatments coming out…but I feel like it is time.
My husband has been through hell since diagnosis 18 months ago (advanced metastatic PC). He has gone through docetaxal (almost killed him), Lupron, Xtandi, Abiraterone, Xgeva, immunotherapy, palliative radiation, and next was going to be cabazitaxal. His labs came back with his platelets at51, too low for treatment. He has a bone marrow biopsy next week, which we assume will show cancer. He has also been considered for two clinical trials, but with insurance dragging their feet, and now low platelets, he has lost both of those spots.
His PSA jumps about 30 points ever week or two (it is at 90 now), bone Mets from head to toe, his pelvis is solid Mets and he has three fractures in his spine, he can barely walk, has extreme fatigue and extreme pain, and is not the same person from two weeks ago, let alone one year ago.
I keep waiting for the doctor to say hospice, but we haven’t asked, and so I think the doctor just keeps going.
I would like to know, with you all going through this, or partners who have helped their loved ones through this, where are we at…
I feel it in my heart and my gut, there is not much time left. I feel it would be a miracle for him to be here this Christmas.
I appreciate any candid responses, as I find the truth and honesty easier to handle than pity. I am a realist who’s heart is broken.
Thank you for letting me ask this question in a safe space.
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Sipj
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I got to the same stage. I can't walk anymore and I'm going to try a third radiotherapy to decompress the spine. And God willing, a few sessions of Jevtana to save two or three months. I am already in a palliative care unit. With psychologists and even a clown who looks liketo an angel. In the hand of God!
Luck to you, I sincerely hope you find some relief. Yes we are in palliative care, “maxed out”, they will not increase pin meds and encourage him to go on hospice soon. They do not want the “liability“ I feel.
I would at least look into treatment with Pluvicto. There may be transfusions needed before or during treatment. There was a study done with patients who had bone marrow involvement and got treatment with Pluvicto. Here's a link:
Median progression free survival (PFS) was 9 months (95% CI [6.3, 11.7]). Objective response translated into significantly prolonged PFS (2.0 vs. 12.0 months, p<0.001).Conclusion: RLT with 177Lu-PSMA-617 in patients with diffuse bone marrow involvement can be performed with an acceptable risk profile and may contribute to prolonged disease control. Diffuse bone marrow involvement should therefore not routinely be considered an exclusion criterion for RLT.
I should have added, he is scheduled for Pluvicto on September 28. That is the soonest and it has already been pushed back twice because of medication shortage. They wanted him to start as soon as possible on chemo, so I am worried about him doing ok until then.
I'm currently on Jevtana and it's been much easier than Docetaxel. My doctor said that's often the case.
It might be worth it him for try it in the interim so he has something against progression, even if it needs to be at a reduced dose. I'm finding this chemo to be quite a bit easier than Docetaxel and it's provided complete pain relief. I could barely walk when I started.
What about a transfusion? I would think they'd also need to do that for Pluvicto. In the study I posted the link to, they had to do transfusions on patients during the Pluvicto treatment.
Yes, for sure. I'm on day 3 of cycle 2 and I almost feel back to normal already. Yesterday I definitely felt kind of crappy, but just got some extra sleep and that helped a lot. Way better than Docetaxel for me so far.
My doctor told me they were debating putting Cabazitaxel into the first-line chemo position instead of second-line because many think it's a better chemo. The FIRSTANA trial showed that it was not superior to Docetaxel as a first-line chemo so it came down to cost. I think we know how that went...
While technically not better, if you judge by quality of life it is in a different league, I did ten cycles and the last cycle was easier than the first cycle of Docetaxel. Most people didn’t even realise I had started it until I told them.
I agree. I can almost function as I normally would taking it. When it comes to Castrate Resistant Prostate Cancer, I think it's also technically better too. It can kill cancer that is resistant to Docetaxel and that's why it's used when Docetaxel fails.
You did 10 cycles, that's great. How long ago did you stop and have you done any treatments since then?
I had my last treatment at the end of April, I then started 6 cycles of Radium 223 mid August. This was due to continuing pain in my right groin, I have started to feel a little benefit but I was warned it could take 2 or 3 cycles to feel better.
One more question if you don't mind. Sounds like we both had pain in pretty much the same area.
Did your pain go away for the entire 10 cycles or did it come and go, steadily decline, etc?
My pain went away completely a few days after the first cycle and has mostly been gone, but I do have some occasional minor flare ups, even a bit more the day after infusion. Of course, that leads to anxiety and I-wonder-if-it-stopped-working thoughts. Curious about what your experience has been.
My pain before starting was totally debilitating, I went from doing a 10k run a couple of times a week to barely being able to walk in 8 weeks. My pain was reduced substantially and I had some radiotherapy, but it never left me. I still have difficulty driving but thankfully I am now at least able to get my 10k steps in every day.
I could barely walk too before starting Cabazitxel. I was taking Norcos, Ibuprofen, Tylenols and some cannabis around the clock. Lots of pain in the groin area and left hip. The day after my first infusion was especially bad. Then a few days later I woke up wth no pain. I thought it was fluke, but it's pretty much continued now for 3 weeks.
We are saying a prayer for you now. I know how important it is to get good medical care but I know for a fact how God wants you to include him in the process of this difficult time. I was there also and we must look at all avenues. Body, mind, and soul. Body taking care of it, mind keeping a positive attitude and keeping well informed. And soul knowing we aren’t just and oversized fetus but a wonderful creation that God designed and loves us so much. He wants to help but won’t ever go against our own will. Many will to keep God out of their lives. But many of us welcome God in our lives.To each their own, but in the long run having a God at our sides at difficult times is way better than going it alone.
Dear Sipj, you two have come a long and difficult way in a short time. My husband fought for 4 1/2 years before deciding to go on hospice. Chemo resulted in a ruptured duodenal ulcer that required emergency surgery; he survived that like a champ but was greatly weakened. Hospice provided him with great care for 2 1/2 months. Never had pain that wasn't manageable with meds they provided and he wasn't a zombie; he only became semi-comatose for last 5 days of his life. When it is time, hospice is wonderful. They are very respectful of quality of live and very responsive...I always got callbacks in a matter of minutes. Your husband will decide when it is time. My prayers are with you both.
Dear Sipj, this is an honest reply - no one knows of course, but based on the similarity of his progression to my husband Jon I’d say he only has weeks at best. Jon died 4 months ago less than 2 years after the shocking diagnosis of advanced prostate cancer following investigation for increasingly severe back and groin pain. The pelvic mets were particularly bad with 3 obvious fractures, and innumerable other mets from skull to knees. The treatments - eligard, abiraterone, docetaxel, Lu 177, cabazitaxel all worked at bringing down his PSA initially but rapidly lost effectiveness as the cancer rebounded. He also nearly died in hospital after the 1st docetaxel round with severe febrile neutropenia, narrowly avoiding septic shock. His pain and fatigue were a constant but his will was enormously strong and he carried on working on his beloved farm until very near the end. Two weeks before he died he had an indwelling catheter put in for acute retention - there was no constriction - the assumption was nerve damage from the spinal mets. Nearly 2 litres was drained and he wasn’t even particularly uncomfortable - a bad sign. The next day he had 2 units of blood - the blood test before his cancelled 3rd cabazitaxel infusion showing severe anaemia - and much elevated PSA. After a few days deterioration was very rapid and for the last 5 days he was bed bound with palliative care services coming to our home to administer meds via a syringe driver. Only 7 days before he died he was in the tractor with my daughter sowing a crop! The end stage was mercifully short. Sadly I think once bone marrow is infiltrated and treatments stop working it doesn’t take long. I know you don’t want sympathy but you have mine anyway. No one who hasn’t watched someone they love suffer as we have, can possibly understand what it’s like. Completely heartbreaking.
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