Limited time/options

[Sea5]

Hi all, we’re waiting to hear results of a genetic test to see if Keytruda might be of help for my dad, who is almost 87. While on docetaxel, his PSA quadrupled ( from 6 to 24). We saw the urologist today. The oncologist was not very good about it, but had recently attempted to talk about end of life with my dad. The urologist (who isn’t optimistic about Keytruda helping dad) did a much better job, as she is passionate about hospice and helping her patients be at home, if at all possible, and comfortable. From assessing things today, she said we’re likely in for a pretty rough 6 months to a year.

Dad has continued to say he would pursue treatment if the docs think it might help, and continues to defer any medical decision-making to the docs. I worry about him persevering with treatments that could totally wear him out, and while I’m determined to support his choices, I won’t hesitate to talk with him along the way about that.

Dad is a traditionalist kind of guy who likes having a routine. He tried taking ginseng for his low energy levels, but seemed skeptical and didn’t give it a lengthy trial period. He’s not going to make big dietary changes. But since he says he wants to keep fighting, I am wondering what if anything we could try that he might agree to...something that wouldn’t hurt him, and might possibly help him, and/or give the MO with whom we have contact some information or insight? Vaxchora? Niclosamide? Fenbendazole?

Thanks for any suggestions, and for all the info and support here!

[Magnus1964]

The neuropathy can be handled. Here is my list of drugs for that.

Mirapex 1 tablet 0.25mg - prescription

2. Gabapentin 2 capsules (300mg) - prescription

3. Acetyl L-Carnitine 1 capsule 500mg - over the counter

4. Leg Cramps (by Hylands) 2 tablets over the counter

5. Aleve PM 2 220mg - over the counter. Because Aleve can cause liver damage with long term use I have substituted Zyflamend 1 capsule.

I take each of these dr

ugs at least 20 minutes apart in the early evening. This helps me get a good nights sleep. The effects last all day long.

What treatments has he been on for Pca?

[Sea5 in reply to Magnus1964]

Thanks for the reply, Magnus! They stopped the docetaxel chemo, so I guess the silver lining is not having to worry now about neuropathy...I’m glad to hear you have found a regimen that works for you!

My dad is currently on Lupron and Xgeva. He took Zytiga until it stopped working, and then took Xtandi until it also stopped working. He has spots on one lung and his liver, and possibly in his mouth...no one is talking about addressing them., except by repeating scans after Thanksgiving. He’s also been dealing with anemia,

[Sea5]

Thanks so much for your reply! It would be a joy for my dad to feel good, even for a limited window of time. You’ve given me some starting points to dig around for more info...much appreciated!

[ctarleton]

On the flip side things for Quality of Life as feasible treatment options may dwindle, you might find some preliminary ideas for family discussion in either of these resources:

Dr Atul Gawande's film/book, "Being Mortal" (medicine and what matters in the end).

pbs.org/video/frontline-bei...

The documentary film, "Passing On".

passing-on.org/

Hugs to you all, and best wishes for the things you hope for in the year ahead.

Charles

[Sea5 in reply to ctarleton]

Thank you Charles! You’re the second person to recommend that book! So i’ll have to get a copy, and also check out the documentary. The idea of letting a loved one go is so hard, but not as hard as watching them suffer. The urologist told me yesterday that the vast majority of docs choose hospice, as compared a fraction of the general population making that choice. In this case I think the docs are right. Glad to have a member of dad’s care team advocating for good end of life care. Also glad for the kind and informative voices here. Thanks for your message!

[ctarleton in reply to Sea5]

Along similar lines, the 2016 book "When Breath Becomes Air" by Paul Kalanithi is also good.

[Sea5 in reply to ctarleton]

agreed! That one I have read...definitely worthwhile!