provenge....I lost what I wrote on my husband's finishing his 2nd trtmt. and reactions...no appetite..his oncol. prescribed marinol for appetite..took judt 2 or 3 so far and does nothing but sleep. do not know how to handle this. anyone familiar with this.
sidnw's wife Shyrlene
Shyrlene,
Fatigue is a side effect, but this sounds unusual. Is your husband also on ADT? That could add to fatigue. How about pain meds? Those can, too. It sounds like you might want to reach out to his oncologist.
Best to you,
Yost.
Yost,
Sid, on his Oncologist's advice, since he absolutely has no appetite at all started on Marilon which is synthetic leaves. I stopped it after three pills seeing his extreme tiredness....This is all after he successfully took Zytiga for 7 months with prednisone and then it stopped working. So Provenge was decided upon next. He was good after 1st treatment but not now after second treatment.
I know you seem to know a lot on all this and appreciate your advice. I intend calling his Oncologist Wednesday.
Shyrlene
In the meantime, if you could get a Boost or other nutrition drink in him, it might help in the absence of eating. Best to you both.
My experience may not be relevant at all, but sometime after her stroke my wife lost all appetite. Her doctor prescribe Megace and her appetite returned dramatically within a day or two.
gak.
Hello Shyrlene,
I wish I knew something that can help you but I've never experienced either Provenge or Marinol. I speculate that Sid was knocked down somewhat by the second Provenge treatment and that the Marinol knocked him down further. It appears from searching Google (try marinol half life), that Marinol can stay in the system for some days and that may be what Sid is experiencing. If that's so, he will get better over time but it may take a few more days.
Best of luck to you both.
Alan
Good news! Thank you!
Thanks so much Alan for your reply...If I can even think he will get better over time..I feel much relieved. Marinol (half life) sounds better. I am sure he will appreciate your thoughts on this..as I do.
Thanks Alan..will let you know what happens.
Shyrlene
Hope your Sid is doing better today (12/28/17) after his second Provenge treatment. I was a bit worried about him after reading his concerns several weeks ago, and then not being able to find any updates since....hang in there.....Ron In CT (Provenge graduate October 2017) - with no complaints.....
Ron..Sid is having the finish of his last PROVENGE TREATMENT TOMORROW.
FRIDAY, DEC. 29TH....He had a port put in with a horrible looking bag attached for the blood. very uncomfortable! After blood is put back he will have port removed.
I am worried since he seems to have lost appetite completely and Dr. prescribed Marilon.... marijuana. He stopped taking that..more tired and his appetite not helped at all. Before this he was fine on Zytiga for 7 months and prednisone..but that then stopped working,
Have you had any problems at all while taking Provenge?
I guess Sid said it was so nice of you to ask about him. (Not so classy after all)
Shyrlene
Hi Shyrlene:
Glad to hear Sid is getting his third and final PROVENGE treatment today 12/29.....as others have said, his loss of appetite is unusual....having said that, we all know that we patients react differently to the many kinds of prostate cancer treatments, and that is why there is still no generally accepted protocol or treatment plan.....again for me, I just had that one case of the severe chills at PROVENGE infusion #2......no problems at the last infusion in late October 2017...please get back to us in a week or so with expected good news about Sid....as for me, now that I have mets to lymph nodes and bones, discovered in recent months, I will probably be starting with traditional chemo soon........Ron in Connecticut
Ron...Are you saying the Provenge did nothing for you? Sid's Dr., yesterday said at this point the Provenge is fighting the cancer...As I said he hasn't been eating. He is taking a new med that someone here said his wife had a stroke and their Dr. prescribed it. Sid took one dose today. He had half a banana in morn. and BOOST and org.Jce.
He had a few cut up frt. from a jar. for lch,
At this point I am extremely nervous!
Shyrlene
Shyrlene:
Maybe you weren't told this: after someone goes through the PROVENGE treatment, as I did when I finished the third and last infusion in late October 2017, it may take 6 months or longer to tell if it "worked". MAYBE after 6 to 9 months a patient would see their mets decrease (usually in lymph nodes and bones) or MAYBE the PSA would drop way down. So don't expect any quick change in your hubby Sid who apparently just finished his PROVENGE treatment. In the meantime, we are all able to try other treatments as we wait a long time for the PROVENGE to work. In my case, I am considering starting chemo soon, or participating in a clinical trial.
Good luck and regards to Sid....
Ron in frigid Connecticut
Sid's Dr is talking out his hat.
Dam! The saga continues for us all. Sorry for this turn. Good luck in yet again another treatment.Kick that SOB back into the dark ages where it belongs.
He needs to avoid dehydration to say the least. At one point I was that way due to a yr of constant UTIs and antibiotics, another was due to a the drug hyaphen . I couldn’t smell food or I’d get sick . Nothing tasted good and I could barely choke down water to take the dam drugs twice a day. That’s the state my urologist had me in as I awaited a biopsy for six weeks not making that..Instead went into kidney failure .Then got diagnosed. We were angry feeling that I should not have been allowed to go into kidney failure while under a urologist care.. This not eating is serious and must not continue long. Hopefully these symptoms will diminish and he can start healing from this trauma quickly now treatment is finished..
Thanks Lulu....Somehow I feel a bit better when reading messages from all of you. I can only hope his Oncol. this Friday doesn't give us "No Hope."
Shyrlene
Thanks Ron..I really appreciate your info. Were you on any Meds before Provenge?
Sid says he will never go on chemo...no matter how mild it is. He feels it would kill him at his age. I can only hope his appetite gets normal. I haven't heard of any others who had Provenge and afterwards lost their appetite. That's how he was when it started. He was very sick then..having many pts. of blood given to him and with Zytiga he was much,much better. Dr. will not give him the Prednisone now..says it will interfere with Provenge. What do you think Ron?
Shyrlene
To Shyrlene re Sid:
I just saw your latest post above from 11 days ago...
To answer your question, before I went through the PROVENGE immunotherapy treatment in Sept/Oct 2017, I had been taking in sucession for the prior 7 years: LUPRON, CASADEX, XTANDI, ZYTIGA, KETOCONAZOLE. They all worked for a while, then stopped working as my PSA climbed (at 400 2 months ago) and then got mets to lymph nodes and bones in recent months. Now getting XGEVA injections every 4 weeks to help the bones, and planning to start with traditional chemo TAXOTERE in a couple of weeks, after investigating and deciding against a clinical trial.
Once again the only side effect from three PROVENGE treatment cycles was severe chills at infusion #2. Everything else OK incl appetite.
How is your Sid doing now (January 17, 2018)?
Ron in CT USA
Ron, Sid is not doing well..not eating more than a drop here and there. Friday is his app't. with his oncol. and he shd. be getting another procrit ..third since Provenge. Joel Nowak suggested another opinion. a very good Dr. at Northwestern here in Chicago. My daughter got him an app't the end of month. I'm so afraid she will say nothing will help.....She was in Michigan before and N.Western worked hard to get her.
If I could only see him eat again...
Shyrlene
Same story as last 3wk checkup! Alk Phos decreasing and PSA considered stable 
Am I imagining things. 
PCa symptom: Sweet Tooth?
test Enzalutamide or Lu 177 for the first line therapy?
