I just got the call from my oncologist about a hour ago, she said I'm sorry to inform you your PSA has risen to 0.4 from 0.08 6 weeks ago while currently on xtandi, after zytiga has failed. I had a radical prostectomy June 2016, then 2017, 37 radiation sessions, and zytiga kept the beast at bay with lupron for 16 months until it didnt approximately 5 months ago and the PSA shot as high as 7 before xtandi and lupron brought it down. Current day the familiar upward trend begins. I am now unlike before dealing with a profound sense of sadness and far less hope than when I was cruising along on zytiga. I realize docetaxel is a viable option as well as provenge and perhaps clinical trials. Although it all seems a bit darker and less hopeful that I have months to live rather than years. I have a fear of chemo even though it ssems like some of you seemingly breeze through it. My oncologist has sped up the process to get scans and she also scheduled a PSA in two weeks. In the meantime I guess I forge ahead all the while preparing for the wors. Anybody have any Pearl's of wisdom or insight from personal experience having been down this road. Thankyou all
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Costarica1961
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Hey Costarica - that sounds familiar. The same happened to me. Xtandi only worked a short time after Zytiga. That is a pretty common occurrence from what I’ve read. I’ve had chemo twice now once in 2016 and once in 2019 (Docetaxel). I certainly don’t like chemo, but it saved my life in 2016. Have you had genetic testing of your cancer completed? The results could indicate suitability of other treatments such as immunotherapy. If immunotherapy is an option for you - go for that if possible. I also heard there is a trial using LU-177 and immunotherapy Premboluzimab. That could be a really good combo of meds. Using the LU-177 to unmask the pc so the immunotherapy can clean it up.
Stay Strong - there are many options out there still to explore.
I have had genetic testing. Hopefully this will help in the treatment plan which would be my next best option. I keep hearing about this LU-177 I Thought it was overseas and expensive, although money has taken on a new meaning, I now consider dollars as soldiers to fight my own war on PC. Thankyou, knowing you double dipped on chemo and are here to talk about it is real encouraging.
Chemotherapy is a good treatment option left for you. There is first-line Docetaxel and second-line Cabazitaxel. I've been through Docetaxel and it is not that difficult for most. Many have said Cabazitaxel is a little easier.
One thing to keep in mind is the difficult part is only 1/3 of the total time and that first week is not that bad. My comparison would be somewhere between a cold and flu. Not fun, but nowhere near as diffcult as some other things I've made it through. I'm probably going to be doing it second time. If it was that bad, I would not be going back for seconds. I was just reading an article about Cabazitaxel vs taking another second-line ADT drug after the first fails. They found a median progression free survival of 8 months with Cabazitaxel. To me, that seems well worth the side effects.
One other thing that doesn’t get discussed enough on this forum is taking care of your mental health. It’s easy to succumb to depression when dealing with this, it happened to me. So go see a shrink and find out if antidepressants could help lift the fog. I feel emotionally normal on these drugs not whacked out.
Thankyou I greatly respect your insight. I have had genetic testing. Which will be a great help with the next steps I understand. So your thoughts are chemo,specifically docetaxel. Should clinical trials be considered . I always hear tall Allen refer to chemo the sooner the better. I do workout 3 days a week and walk 3 to 5 miles a day. It does help considerably, although I am as many of you concerned about wife's ability to cope with this progressive bad news, shes very fragile to say the least. So my depression is primarily about her future without me. I am all she has. Plus I am a young 58 and love life to the fullest and would like to at least retire,and travel etc etc. I am very realistic as well.
I delayed with the psyc drugs longer that I should of. You wouldn’t delay heart medicine, don’t delay taking care of your mental health- they are messing with our hormones and have us all whacked out on different drugs. I support Nalkrats and physical health- but don’t fear the meds. My family life is better now that I feel normal again and not depressed.
I too am 58. This month is my fifth anniversary for marriage and my dx with APC ....I’ve been in hell with APC but in heaven with my wife’s love . Hope and dreams were replaced with just surviving it all. I’m rooting for you to persist over pc and one again push it down and keep it there .
What specifically do you need to see. I had a difficult time understanding all of it. That would helpful to have another knowledgable set of eyes on it.
I am right there behind you and hoping for the best. RP January 2019; Lupron Started March 2019; 38 radiation sessions in July/August 2019 and started Zytiga in August. So far the PSA has been <0.01. I am due to cease ADT altogether this coming August-total of 18 months of ADT. My Dallas Urologist did not want me to be as aggressive as my Marina Del Rey oncologist was and said delay the Zytiga. Dr. Lam, my OC, said "no"- go for it.
Aren't we all hoping for some real advances in treatment options?
I believe after almost 4 years of uncertainty. the most valuable thing we have as humans is peace of mind and hope. Although continually that gets stomped on. I love living so I do everything with in my power to keep on fighting . Good luck on your jouney.
I’ve have not been down this road yet . I had a hard cold start with APC then I’ve been on cruise control four years . One lucky sucker . However I understand about the profound sense of sadness with an uptick of the PSA.I like your dr calling you . That’s a good dr. Also I like the approach. I think you have a good dr . You have a tuff pc that you must once again clobber with some kind of hammer ..please don’t give up hope . You’ve fought though many hurdles already . We can’t ever give in . That doesn’t mean that any of us are going to ever fully skate free away from APC . We carry it on our back . You’ve more fight in you . Our reasons to live must stay in the for front . Keep the wheels turning ..
Oh indeed I will fight on as if my life depends on it. 95 % of the time I'm smiling and making loved ones laugh but that nasty 5% I allow the doubt of this boogie man to creep in. It's all good I already told him to go away. The news was a bit raw when I wrote the original post now a few days later after playing 18 holes twice and walking a 100 yards to the surf by my house to clam and crab my attitudes already been adjusted.
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