very rough day at the doc and needing advice for my son age 41
DX in Jan with PSA of1250 with bone and lymph node at mayo clinic. did chemo and lupron and after 6 chemo psa went down to 8. went to northwestern for a second opinion and they suggested a clinicial trial. after waiting 6 weeks for results of a boispy being told none of the specimans were viable so not accepted in the trial as we could not wait any longer for new treatment. while waiting psa went from23 to 85 and lots of burning bone pain. tthe oncologist at u of chicago wants to start chemo again with zytiga. my son did not want me to be there for the appt . but told me without treatment he would have about 2 months. with treatment maybe a year. I have read about keytruda radium 233 in clinicial trials. my son is very discouraged and wonders why he is fighting this so hard for a few months and a terrible quality of life ..
I don't know what to tell him. talking about other treatments and trials seems like false hope .everyone on this site is knowledgeable and helpful. I know every cancer is different and peoples response is different . his seems very aggressive. what after chemo and zytiga?? do we wait and see or plan the next treatment or accept the one year opinion??
thanks for all your advise
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Eabradley
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Sorry to hear about your son. There are many multi year survivors with aggressive disease like your son. That’s a disservice to give such a pessimistic prediction. I hope you contact an oncologist who specializes in prostate cancer.
I am a stage IV 15 year survivor with a aggressive disease similar to your sons with both bone and lymph node mets. I was one Zytiga for 15 months and had 13 Chemo treatments after that. My own opinion and experience is that you can live a long time with this disease with the proper treatment. I agree with Hirsch, that it is a big disservice to your son to receive such a pessimistic prediction. I got one of those myself and quickly found another doctor. Good luck and don't give up.
Maybe he should do Xofigo first and then do chemo/Zytiga (he can't do Xofigo and Zytiga simultaneously). Did he ever get the immunohistological analysis of his mets done? That might give him a clue as to which chemo is best, and if Keytruda is appropriate. There are lots of new trials of various radiopharmaceuticals (Ac-225-J591, Lu-177- PSMA-617, and I-131-MIP-1095 and probably more to come)
Do not let him give up. Lots of stories on this site where guys got long durable remissions. Years. And new treatments all the time. I had chemo , ADT (lupron ) and Zytega. Worked great on my Mets and I’m now undetectable PSA.
again thanks for all the positive replys. I needed that. pity party is over and time to resume the fight. going to suggest we return to mayo clinic and see dr kwon. went to northwestern to dr husain and not a good fit. his pain level has increased over the last couple weeks . he is now on a patch and morphine pills and oxycontin for pain which make him sick to his stomach. says it is like a burning pain from the inside out. not eating very much. hard to watch but maybe when the PSA goes back down he will feel better. waiting for the clinicial trial was a big mistake as his PSA tripled.
this site has given me knowledge about how to fight this thanks again
"going to suggest we return to mayo clinic and see dr kwon".
I've seen the name dr kwon on this site many many times. All of the posts here have said that dr. kwon is a top notch Oncologist, so it would be a good idea to see him again.
iam confused his psa is 85 and i have talked to pts who's psa is 600-1200 and they are terminal 85 isn't all that bad. mine was 6o0 last month and with the lupron shot it went down to 36 so maybe different oncologists might be helpful
again has anyone done zytiga and chemo at the same time. was told side effects would be pretty bad. not sure why both together . Radium does not reduce PSA so that is why chemo and zytiga. if I can convince him to go to m d Anderson who should he see there?? preferably a Male doc.
I did Zytiga and chemo (Docetaxel) at the same time. I had been taking Zytiga and Lupron for about 3 months before doing 6 rounds of chemo. I had very mild side effects from the hormone treatments so they thought I could tolerate the chemo at the same time. Chemo was unpleasant but not awful.
If I had to do it again knowing what I know now, I would have done the chemo right away and then started the Zytiga. But everyone is different.
Same time. Halfway through. Side effects back muscle stiffness that comes and goes, one puffy eyelid, and one bout of neutropenia driven hospital visit during the nadir.
Everyone is different, of course, though echoing comments above - recent research and anecdotal contributions seem to suggest that slamming this thing as early with as much as you can handle is the right approach. Best wishes and blessings to you.
14 months ago my situation was very similar to that of his son. I was diagnosed in 07/17 with a PSA of 1350. Extensive metastases in the bones, a lot of weight loss. I was immediately put in Zytiga. At present my PSA is 0.19, I have regained my weight and I have no pain. I can say that my quality of life is good. I walk every day an average of 10 km. Even on some occasion I have dared to jog. Before the diagnosis, I was very athletic.
Let your child fight as much as he can, trust in medicine and hope.
I wish I had some advice to offer you. I’m sorry, but I don’t. I’m in these forums for my dad who is 77 years old and fighting this horrible disease as well. I’ve been by his side and with him for every appointment for the past 3 1/2 years. He’s my dad, and I love him dearly. I fight tooth and nail as his advocate researching and reading new posts in this forum and other groups all the time trying to bring him the latest news and updates on treatments. Yet he is 77 years old and I realize that he has lived a very full, beautiful life. I do not want to lose him but I realize that his time is coming to an end. Hopefully not anytime soon but that it is winding down. My heart hurts for you when I read about your son. I’ll be 36 next month. I have a brother-in-law who is 41 and for man to get this disease at that age is just cruel and seems so unfair! I realize what I’m saying brings you know comfort and offers no advice, but I do want to share that because of your post I am going to be talking to the men in my life more fervently about early testing! I always have this discussion with my own husband, but I am going to use the example of your son as a reason for the other men in my life to get tested early. Maybe knowing that he has prevented another man from walking down his path will give him some comfort, purpose and meaning. Many hugs and prayers coming your way!
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