First time posting in the forum. My special someone is a fighter. Several rounds of chemo, spot radiation, Zytiga, Xtandi, and three treatments of Lu177 have all since failed. He’s currently only on the Orgovyx.
Innumerable mets on scans, all in the bones. No soft tissue involvement. He has a reputable MO who is saying he is willing to allow him to try Keytruda as a Hail Mary even though he is not MSI high. He does have high percentages of TP53 and BRCA1 alterations in his recent blood biopsy.
His anemia is quite serious now and has had 3 blood transfusions in the past few months. It had been holding on until that final LU177 treatment. Curious about keytrudas effect on the bone marrow as his is obviously already significantly impaired.
A little background on my guy… He is 61, and has made the most of these past few years of sickness. Until the last few months, he had kept active. His declining blood counts have really taken a toll on his energy level and is leading to muscle weakness. He wants to continue this fight and has just no “give up” in his spirit.
We have an appointment in a few weeks with Tanya Dorff at City of Hope for a second opinion… hoping for some other ideas or trial options. Trying to decide whether to start the keytruda now or wait until after the appointment on 8/17 (if he decides to keep the appointment).
Your responses are very much appreciated.
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Zengal79
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Has he tried a PARP inhibitor? Dr Dorff has several great trials running at COH. You may want to hold off on Keytruda as some of her trials may include that or similar checkpoint inhibitors, and taking it now might exclude him.
Thanks for your response. This was just the kind of insight I was hoping for. He has not tried a PARP inhibitor. There is a real learning curve to all of this and lurking around the board has really helped me gain better understanding.
He should wait with the Keytruda because he could jeopardize the possibility of being accepted in a clinical trial.
If he is not willing to consult, he should request treatment with Olaparib or Rucaparib since the cancer is BRCA 1 positive and these drugs could offer a survival advantage.
First off, he has been through a lot, and those treatments did significant damage. I am speaking from personal experience and being candid. I had extensive bone mets, and tumor growth inside and outside my spinal column. It's been a journey too long to share in this post. Today, I no longer use ADT but have cycled an occasional receptor blocker like Xtandi. I use a combination of high pH mineral salts which have a high affinity for the bone. These seem to diminish the PCA cancer in the bones if not eliminate it, but no so well in soft tissue.
I try to help a lot of other men with advanced PCA mostly by alternative, non-toxic methods. If you want to know more about how I manage my own extensive bone mets feel free to send a private message. I am pain free and life is good again!
Hello- My husband also goes to Dr. Dorff. Let me know if I can help you in anyway. We have been fighting since 1997 when he was first diagnosed and given a grim prognosis.
Thank you, I lost Brian last month. HDGuy61. His bio is on his profile if interested. Prostate cancer became so much a part of my life, I’m having a hard time letting the board go not that he is gone. Dr. Dorff was great. It was just too late for him.
I am so very sorry to hear that. The wife/husband/partner is an integral part to the treatment of prostate cancer. From experience, I know that you were an HUGE part of the journey. I will look into his profile. My best to you.
Thank you. It is a huge loss, but we had a remarkably good run. Grateful is the name of the game for me. Best wishes to you in your journey. Seek joy every day!
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