Update

[Wyldhare22]

The results of my husbands’s bone marrow biopsy shows that the prostate cancer is widespread in his bone marrow and are causing him to have low blood cell levels. He was told he could to chemo with a low level dose of Taxo or go to hospice. I am sharing so people have info on end of life choices.

[shuckymesh62]

The exact same thing my husband went through in the end. He chose Hospice and lived for 3 weeks. He suffered with terrible nausea. The doc said it was because it had spread to his bone marrow. You both are in my thoughts and prayers.

[Concerned-wife in reply to shuckymesh62]

Thank you for your generosity in sharing information. And condolences.

[Jancapper]

I feel for both you and your husband. It just saddens me every time I read such a post.

[Collarpurple]

, this is on the mind of every wife, I soo hate C

Prayers and strength for you and peace for your husband❤️

[noahware]

I would ask your MO, would the point of the low-dose chemo be just to extend his life a bit, or would it be to actually improve his QoL (by relieving pain or other symptoms)? If, for example, if it can ultimately relieve the nausea he has been experiencing, or improve blood counts, then it would make sense. But I would be worried that at this point the chemo might not have those benefits.

Did the conversation about the possibility of high-dose testosterone ever happen? The big worry about trying that is it might cause an inflammatory response that would lead to an increase in pain. But on the other hand, if your husband is not currently having any bone pain, high-T might improve QoL and could even have the possibility of killing some cancer cells and/or improving blood counts. (The other possibility of a negative outcome still exists, too.)

There is of course no FDA-approved use of high-T for this purpose, nor is there clinical trial evidence that supports it. Your husband would probably be too sick to qualify for a BAT trial. But that does not mean high-T has zero chance of being beneficial... it just means it is a long shot, with unknown odds of it being either helpful or harmful.

Most docs obviously want nothing to do with any therapy that is experimental or falls outside of established standards of care, especially if it has a potential to do harm. But if your doc is completely unfamiliar with BAT, I put a link to a summary of it below. Nothing in that summary really indicates its potential for use in your husband's case (of extensive bone marrow involvement), but if the only alternative is hospice then perhaps it can be considered.

onlinelibrary.wiley.com/doi...

[addicted2cycling in reply to noahware]

I thought about the High *T* also. IMO, worth a shot or 2 +

[Mjk681 in reply to noahware]

If doctors really cared about side effects and QOL they wouldn't recommend hormone therapy.Ask for radioactive psma antibodies.

It's new it works

FDA won't let me do it till hormone therapy and chemo fail.

Offered to pay still refused

[Zengal79]

Sad to see this, my heart goes out to you guys. Such a tough spot to be in. My guy declined hospice to continue being able to get transfusions and tried low dose chemo pill as well as keytruda near the end when trials were out of reach. He was getting ready to add Cabometyx (self-pay) but we did not get that far. Hospice was a huge help and would’ve been much better to have their help way before we did. Almost waited too long to get them on board, but all worked out. Thanks for keeping us updated. Again, my heart goes out to you and your love. My best wishes to you in the journey.

[Wyldhare22 in reply to Zengal79]

He decided today to start hospice. I am honestly not sure I could get him to an oncologist appointment at this point, he is so weak. The decline has been so fast. He has terrible nausea, but is not in pain.

[Zengal79 in reply to Wyldhare22]

Hospice will be a lot of help. Nausea is common and there will be meds provided. Glad his pain isn’t bad and hopefully nausea will be under control. soon. my thoughts are with you. Use all the support you can get from others.

[addicted2cycling in reply to Wyldhare22]

;,0(

In agreement with noahware's High *T* suggestion.

[Concerned-wife in reply to Wyldhare22]

Such a hard time for you. My heart breaks for you

[Lyubov]

My heart goes out to both of you. I can't imagine how difficult this is for you. Sending warm thoughts and prayers.

[dockam]

Oh dear :-(, this is such a horrible disease. I hope and pray that he continues to be painfree and when His time comes, that he is surrounded by the Love of Family and Friends💙

Peace be with you

Big Hug from Ca

Randy

[babychi]

Thank you for your input. Much appreciated.

We have decided if and when he gets to endstage that I will facilitate all I can to meet his wishes for a quick, peaceful end. I saw my father suffer until he begged for a finality. Humans can be so cruel to each other. My stepmother had much to gain by keeping my father alive, as long as possible. Sending our best wishes for a painfree, calm and quick ending for your beloved.💕

[Luv2fish]

about 11 months before my hubby died his blood counts started to decline and it was not treatment related. Our oncologist said it was because the cancer was trying to infiltrate his bone marrow. He did a 3rd round of chemo and that gave him about 8 months of good QoL. And then his blood counts tanked after a single radium treatment. He tried 2 low dose chemo infusions which did not help and entered hospice. The good thing was that he had little to no pain other than from the thrush he got - probably from the low dose chemo. I hope that they can get your hubby’s nausea under control and that his remaining time is peaceful.

[Hidden in reply to Luv2fish]

If you don’t mind my asking, what type of chemo did your husband receive the third time around? So far my husband has been through Docetaxal and is currently taking Cabazitaxal. Just want to keep other options in mind for down the road.

[Luv2fish in reply to Hidden]

First round was 6 of taxotere, second was 9 of cabazitaxel + carboplatin, and his third was 6 of cabazitaxel + carboplatin. He had both adenocarcinoma and neuroendocrine/small cell.

[spw1 in reply to Luv2fish]

Hi what did they give for thrush? After chemo (which did not work anyway), my husband got a spot of thrush in the gum line and after 8 weeks of pestering different doctors, someone prescribed a medicine for a week which worked. It is threatening to come back and the same doctor is not prescribing another week of fluconazole.

[Luv2fish in reply to spw1]

HIs was really really bad, and by the time I figured it out it was a Saturday so that made it challenging. He described it as the worst pain he had been in. He was prescribed 3 different medicines. Magic mouthwash - it has nystatin as one of the ingredients), fluconazole and clotrimazole.

[spw1 in reply to Luv2fish]

Sounds similar to what my husband was given.

[pakb]

I'll be hoping for little to no pain for him and hoping hospice is a big help. They were wonderful fir my father, sister, and grandfather. A help to us as much as the patient.

[Mikeski]

praying that he finds comfort…🙏

[Yank66]

Thinking of you both. Nausea can be horrible, but let’s hope it can be controlled. Prayers for quality time together.

[spw1]

This is very sad to read indeed. I hope that your husband can be made comfortable. My husband has run through two types of chemo with no effect. Against the advice of the NHS we are trying Abiraterone which he never had before. It seems to work a bit at least but everyday something else hurts. These last few days is sore neck and lower back. He has nausea and little appetite. I am making small meals and juices to get good things into him. It worries me to read that nausea might be related to bone marrow (the last scans did tell us that it is in the marrow too). This is a cruel disease.

[KocoPr]

So sorry to hear this news and also so sorry to hear all of the other spouses and families stories. I am also greatful to hear them all still supporting us and each other even though their loved one has passed.

Thank you all for your continued caring