So I’m very frustrated. My brother, stage 4, Gleason 9, PSA 56 diagnosed October 2018 Is getting confusing information from his doctor. He’s on Lupron has had chemo (dox) Zytiga, Provenge and Radiation to prostate. Zytiga worked for eight months .02 then started rising. We have asked repeatedly for gene sequencing. She keeps putting us off. We asked for Provenge but she said there was better things out there but never said what. I feel like we tell her what’s going on and she does not guide us at all. When she was out on a medical leave we saw another doctor and he immediately put my brother on Provenge. As soon as he stoped Zytiga his PSA dropped. When his doctor came back she put him back on Zytiga which of course failed again. More time wasted. Now she wants to start him on Xtandi. I believe it is the same class of drugs and probably won’t work either. We continue to ask for gene sequencing. She now wants to use an old biopsy from two years ago. From what I understand from the doctor standing in for her was that genes can mutate and there are two germ lines. I believe he said we would need a current biopsy. We can’t get it from the prostate because it’s been radiated. I wish I knew that before it was radiated. I don’t want to lose any more precious time. A scan just a week ago showed two new Mets one on the pelvis and one on the hip. Should we go with an old biopsy and start Xtandi like she wants to? There are so many intelligent people on here I value your input. I cannot thank you enough for the time you spend and your dedication to this forum and helping others
Written by
Faith1111
To view profiles and participate in discussions please or .
Welcome Faith .. good looking out for you brother. Others will answer you questions . APC is one convoluted divisive disease . Hard to pin it down . It is possible to put it down for some years . Not without suffering and side effects . With love he can improve . Keep the Faith and stand with him . ✌️🙏
Thank you for your kind words. He’s young and has two daughters 11 and 13. He’s been doing great for the last two years. No pain still going to work and trying to be upbeat. He tried to throw everything at it at first because that is what is advised by many. But now, it seems we’re running out of options. If we can determine that he has A certain mutation it may help us in guiding treatment.
He is too darned young.. I read of one young man of 16 with pc . Very rare. But becoming more apparent are men in their 50 s like me or like your brother under 50..... I empathize with your brother. Mr tall Allan gives good advice . I thank you for sharing your story . There is always something that he can do . Lots of prayers 🙏
The old biopsy tissue of the prostate is pretty useless. Biopsying one of the new bone metastases will tell you more. There is much more info potential from a biopsy than genomic sequencing, although that is good too. First there should be a histological/IHC pathological examination done, and if there is extra tissue, a Foundation One-type test. Your brother should get a germline genome test - it's available from Color Genome Dx for $249 (don't get the 23and me one). Unfortunately, most genomic tests find nothing useful - but worth a shot, right?
Not only is this forum a wealth of information it is a wealth of kindness and support to which I am forever grateful. I have one question, can I xtandi work for some time even though Zytiga has failed?
As I said ADT drugs work differently and each person responds differently. So it is possible that you brother could respond well to xtandi and have a few years of quality life.
Can't you change MO?.... Where are you located? Many people here can refer you to a good one probably in your bother's area. Great sister keep up the good work and keep posting here.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.