The Florida get away my dad had so looked forward to has lasted a week. He either gets back on the drug that was making him so sick or has to leave the clinical trial he’s been on. His back is hurting again and he just wants to be home. Every time we think something might work and give him a break, it’s short lived. Xtandi and whatever this other drug is, gave him fatigue, diarrhea (severe) and other symptoms. If we go back to the oncology visit and find he has to be taken off,
Chemo is next. He’s already been through the ringer and it’s only been two years. I am so sad. There is no worse torture for me, than to watch my father suffer
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Stumpgirl
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I am so sorry that you have to go through this. My father too is going through advanced prostate cancer. There is no worse feeling than watching a person you love go through so much.
I really hope that once he goes back to the doctor, they figure out a good treatment approach to try and relieve his symptoms.
All i could say is that I take everyday with my father and try to make sure that I joke with him as much as possible and cherish the time that i have with him now. It's not fair. With all you're going through too, I hope that you find some time for self-care so you don't burn out both physically and emotionally.
So sorry for your issues. I'm curious what the "other drug" is...? I'm on Xtandi and Lupron (of course)....and it's not keeping my PSA down after just a few months on...so I'm afraid I will be adding something to the mix. I found I could tolerate the Xtandi (it was tough the first 3 months) added to the Lupron...ONLY after I added BIRM to my regimen. Everyone is different and it doesn't work for all, but it might be worth a try. You can search "BIRM" on here...or google Birm...if you search on here...you'll see where I and others have posted links to order it if it sounds like it might help with his side effects,
We don’t know. He is in a blind clinical trial at the Cleveland clinic. Many participants have had to come off of this other drug because of gi issues. I don’t know if the Xtandi or other drug (if he’s on it) are causing the issues. His psa has been down so we are concerned about back pain. If he can’t stay on the clinical trial, i would imagine they’ll just try Xtandi or he will go to chemo. Thank you for the suggestion
Some thoughts on the diarrhea.... do not give him high fiber--cut back on veggies, is he on any stool softeners--stop them...There is the BRAT diet for diarrhea--bananas, rice, applesauce, and toast....that may help....Call the trial coordinator and see if he can take immodium--generic loperamide-- it is cheap and may help....another thought is questran which is known to thicken stool.... If he can take loperamide and that doesn't resolve it, you could ask for lomotil which is stronger...what other symptoms beside fatigue??
He takes Imodium all of the time . No relief. Tried lomotil . Found out he has c diff and his colitis has flaired. They took him off of the secondary drug but if he doesn’t get back on he’s out of the trial. We don’t know what’s next..and now he’s complaining about back pain which is super Concerning . His psa has been down and bone scans had been clear. We go back to the oncologist Friday of next week
The Questran is good for C. difficile-- thickens stool, and he should be on PO Vancomycin... stop immodium and lomotil---concerns of toxic megacolon ...can be lethal....use the BRAT diet... he should also be on florastor or a probiotic that he takes 2 hours before of 2 hours after taking PO Vancomycin--- recolonizes the bowel with good bacteria... these should help rid him of C. diff... If he is not on Vancomycin, but on metronidazole/Flagyl--get the MD to switch...there is a lot of treatment failure on Flagyl for C diff...
He should also be getting something for his electrolyte balance...Gatorade--low cal--no sugar or pedialyte to keep his potassium up...K+ can go low with diarrhea... the bananas will help with that also...
Your'e like a walking talking posting Pharmacist. Thank God for your postings. What do you have in the way of gigantic size rubber prophylactics? Not for me to wear, but to use for my modern fashion landscape for the The Museum of Modern Art. I'm gonna name it "Rubbers for Dubbers".
Not a Pharmacist...an exotic dancer with a body so fabulous that if Nalakrats saw it, he would have walked off into the ocean ....never to be seen again...it's what I have to do to pay for my generic Zytiga.... the horror of it all....
Now, who is chuckling...
Neither a pharmacist, nor an exotic dancer am I...
What am I ??
Just another suffering sailor on this hell ship...reaching out to help crew mates...lift them up with the knowledge that I have attained over the years... one of the good guys( at least I think so, although I may be delusional)...
exotic dancer, now that funny,,, Well I and I would assume everyone else appreciates your knowledge and you help in our battle with our shared malady. You are not delusional, you are indeed "one of the good guys". Did I just write that? I must be delusional.....
Hold one, my friend...I'll run out and get us some antipsychotics....LOL... the new ones are so much better on side effects.... the old ones have that tardive dyskinesia.... just makes me look like a frog trying to catch flies... ROFL...
You hit the nail right on the head. I do suffer from tardive dyskinesia. Every time my wife passes by me I uncontrollably slap her on the ass. (She loves it).
Give her what she likes...if she gets upset, blame the Haldol...as for George...thank God he was there when we needed him... The right man at the right time...
"The right man at the right time" I swear, that's what my wife keeps saying about the mail man.. he's always on time and she says he delivers.... hmmmmm.
awwwwww thank you... Would you make a Youtube video saying that so I can show it to my neighbors. They keep accusing me of being a Peeping Tom. BTW I have some used binoculars for sale.
Keeping fingers crossed for your dad. Listen to the suggestions given here and try not to worry too much. It’s no good for either of you. Praying your dad feels better soon.
And what a fabulous cheerleader you are.... such a heart... I hope there is some healing for you going on.... keep you in my prayers and so does LuLu...
Aww thank you Fish! I so love this site and made many friends here very quick (Lulu and wife 😉) and would feel lost not to check it out. I hope to keep cheering you all on as it is a way for me to cope as well. Holding steady so far...prayers to you too.
Stumpgirl, whatever else you and Dad do, it is of paramount importance you keep your attitudes positive. I was diagnosed with stage IIIA/B lung cancer 7 years ago and given a 1 in 10 chance to survive 5 years. I underwent maximum lung radiation, surgical removal of the top lobe of my right lung, and over 2 years heavy chemotherapy, and I survived! A Positive Attitude is Absolutely Essential. While my current prostate cancer is a Gleason 7(4+3), it is being treated with IMRT and Firmagon hormone therapy with seemingly positive success so far. Never give in and Never give up! All Best Wishes, judg69
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seems no one can help
Update! 
chemo pain advice
Starting Chemo & Immunotherapy this week
Scared for the future
