I just found you all 2 days ago and finally don’t feel alone and more hopeful than ever. Would love to learn from you and help where possible. At 50 years old, PSA of 500 12/16 with 15 mets- all in bones from skull to ankle (biggest neck and spine). CHEK2 gene mutation. Radiation and chemo (taxotere and carboplatin) 1/17-6/17 w ADT bicalutamide.
From 6/17-present (6/19), switched to ADT Lupron (every 6 mo) and Zytiga with 5mg prednisone (daily). Dropped to ND <.01 PSA on 8/18 and have stayed there so far since then. Get checked every 2 months and doing GREAT so far! Loving life and almost 53!
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dougnola
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Hi. It's encouraging to see someone as yourself as my dad was diagnosed at a psa of over 600. He has it all over.It's scary to see a scan that is almost entirely black. His treatment is different to yours but i hope he has a good response to the radium 223. I wish you the best. Also thankyou for the inspiration.
Dr suggested to my husband that he try the parp inhibitor if we could get insurance to pay. He has tried everything else. If we cannot get into a trial ,we have nothing left
Welcome to the group- I agree. It is so great not feeling alone. This group has provided me with SO much great info. My husband's diagnosis very similar. Diagnosed 8/17 at 49 with PSA >677, gleason 9, mets to bones and lymph nodes... Bicalutimide for two weeks, ADT + Docetaxel and then, since 3/18 ADT + Zytiga + Prednisone. PSA bouncing between 12 and 8 for last 6 months. Scans show tumors shrunk and he feels really good except a bit more tired. Works out, I have him taking a number if supplements, and he is vegan which I think helps with his energy and other symptoms.
Hoping you both continue with success and feeling well!
Hi, Pak....your post was perfect for me this morning! Your husband's age and story is strikingly similar to mine, but my diagnosis was a year prior (8/16). I started Zytiga three months ago and am now starting to see the bump from (0.18 to 0.25 this morning)...
We can be so cued into PSA as THE measure of our cancer that it affects us even though we continue to work, exercise, etc. PSA is a number that needs to be taken in context with other data. You reminded me - even though I preach it constantly myself - that we need to take all of the information we have about ourselves on any given day before we start down the path of despair.
Completely agree. My husband has been at 8.9 at his lowest PSA. Then we switched labs and got back up to 10.7. So no below 0 yet. But scans are going in right direction and he feels good so that's what matters to me right now!
I was also diagnosed at a relatively early age, 55 and carry the same gene mutation. That was over 5 years ago and so far so good after aggressive treatment early on and ongoing ADT. I take it a day at a time and realize that things can change at any time. I’m truly blessed and thank God every day. Feel free to click on my profile to see what I’ve done.
BTW, CHEK2 can make you more susceptible to other types of cancer too. I was dx with melanoma about a year after PCa dx, had to go through Mohs surgery while undergoing chemo, it sucked. Now I see a dermatologist twice a year to monitor for any other skin changes. Good luck in your journey.
I've learned so much and am grateful for the awesome and compassionate individuals who have formed a type of brotherhood to fight this disease together.
I would consider the advice of certain individuals as solid and noteworthy of further investigation for YOUR particulars.
Welcome to the brotherhood, on behalf of the others who surely wish you the best in your fighting back.
Great spirit, Effert! Similar story, similar age. We are all peers here, but it helps to have ....um....more peery peers....er, if you get my drift. Pakb with similar tale for husband. Gosh, maybe we'll all be the peeriest peers ever!.....
Joking, but I think this forum as a formidable team of experts that has completely taken away APCa's ugly talent of making its victims feel like they are living in the dark. Welcome.
Cheers. - Joe M.
Welcome even though I am far from any expert you will hear from on this blog everyone is open and caring about everyone else's conditions. my suggestion is to ask anything that's on your mind and one of the experts on this site will give you great insight. Good luck.
My deal is going good also. Can’t run any marathon in Texas hill country; but do what I want. Golf, shooting sports etc. work out some, eat what I want.
MD Anderson said I would be dead in 3 years, here I am going on 5 years with undetectable psa.
NO drinking, NO stress, that’s my thing to stay alive. Works for me.
I am proud you had the wisdom,courage and intestinal fortitude to reach out. The power of searching brings and empty space full again.Best forthcoming wishes
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I'm new here, but been reading for a while! Really need help from all the knowledgeable people here!
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