My story is long( 27 years) so it is summarized in my profile. 6 months ago (May 1st)after noting my PSA was rising slowly on 2 years of Xtandi and some nodes grew on my PET scan, my oncologist put me on Zytiga. Biochemically it has failed to stop the PSA progression, in fact it is going up faster. My FDG Pet scan remains stable with no change in tumors and no fluid in my chest. I am also feeling good and remain as active as I can at age 80.
My life has become far more complicated since my wife of 59 years has developed early stage Alzheimers and is totally dependent on me for executive functions, scheduling, driving and everyday memory things. It remains imperative that I stay as able as possible to continue to support her in this awful transition. This plays into my treatment decisions with my oncologist.
Though my PSA is at 20, he is reluctant to "treat a number" unless I have symptoms or show changes on the PET scan. His point is that his remaining treatment options( more chemo or Olaparib) are likely to make me sicker and less able to help my wife. PSMA PET is not yet available in Colorado but likely will be this next year. My oncologist doubts that it would change anything but I would like to know where the new PSA activity is coming from. We are both following that issue.
I will attach a graph of my PSA which tells that part of the story. You will note the slope of the curve increased when Zytiga replaced Xtandi)Meanwhile we are able to enjoy our family, remain active with a large social network, church and have done some travel but only in the US. A highlight for us was going to SantaFe to enjoy an opera and great food-a place we love to visit. Got to see our oldest grandson redo his wedding which we all missed last year due to Covid and we celebrated the life of my sister-in-law which we could not do last year. Plenty to be thankful for this year. Latest misadventure was a fall, leg injury and blood clot in my calf so I am on anticoagulants to further remind me of life's fragility.
Hope everyone can enjoy a Thanksgiving with your chosen family.
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DenDoc
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Many men are able to work during docetaxel therapy, and it only lasts 15 weeks. One thing to consider is that your wife's situation will deteriorate over time, and now will be a better time to get your treatment compared to waiting for later. Earlier treatment prevents pain and fracturing and may extend the time you will be useful to your wife. Also, side effects of treatment are less when you are less debilitated from progressive cancer.
Thanks. Good points to share with my oncologist. I have one who has great empathy and always allows me to participate in decisions. Your perspective is helpful.
Your story is very similar to mine … except I started my stage four Prostate cancer at 57(I’m only 64 now) and to make our story more similar, my husband was diagnosed just a year ago with Lewy Body Dementia. He’s now 71. I am his care giver… I am picking him up when he falls sometime. But I am wondering how much longer I can do this as my cancerous counter almost every bone in my body and more recently with a .05% chance my prostate cancer has gone to my left side of my brain. Life is interesting. I feel like I am pushing myself much harder than I would’ve if I didn’t have to be his caregiver and he could be mine.gJohn
John,I have followed your story very closely. I am so sorry your husband has Lewy body dementia. We are very familiar with it. A close friend is near the end of life entering hospice care with that diagnosis. A brilliant judge who has no idea where he is. Your so courageous in your cancer journey as well. I was hoping the PSMA therapy would help.
From my experience I've seen two of my family members who have Alzheimer's deteriorate much faster than we expected. This led the family to consider professional care sooner than we wanted. It was a hard thing to do but we were able to choose where the best ongoing care was available. Noting both your medical needs, perhaps considering transitioning to a place where you can still live together and both have access to onsite medical assistance is required at this stage in life. It would be better to arrange this yourself and find somewhere nice, rather than be forced into somewhere due to an unexpected significant medical event - one which would prevent you from caring for yourself and your wife. The movie "The Notebook" comes to mind. Keep up the fight brother, 😎 DD
Thank you. We downsized 5 years ago, sold our home and currently are in a 55+ rental. We are close to our medical care and have two children and 4 grandchildren nearby. All are completely aboard with our end of life plans and are very willing to help when needed. We have had great help “having the conversation “ with our adult children.
I worked all through dox chemo, followed the diet, avoided what I should and did great and would do it again if necessary at 70, very active and enjoying life.
That is terrific. We both look back at our activity at age 70 compared to age 80 and are shocked by what a toll it has taken on us. On the other hand we are grateful about what we have and can do. One cannot go back. “Nobody can go back and start a new beginning, but anyone can start today and make a new ending."
Thank you for sharing and thank you for being positive. I am 5 years younger and have been taking Z for 44 months. PSA has now began to rise very slowly, but my active lifestyle and faith have not changed. One comment I’d like to suggest, if you haven’t done so is to get a genetic marker testing. From what I read in clinical studies, Olaparib is effective if you have a certain genetic mutations. The Lord still have a plan for you, such as as taking care of your spouse,. Keep doing what you are doing and enjoy life with your family until He calls us home.
Thanks. I had the genetic testing when my PC morphed into small cell cancer and caused my chest tumors/fluid. Olaparib was shown to be the drug of choice when my cancer recurred. My oncologist wants to hold off for a while unless I have obvious symptoms or a change on the PET scan. "After climbing a great hill, one only finds that there are many more hills to climb"
Have you considered apalutamide (Erleada)? After failing both xtandi and zytiga (both plus Lupron) I’ve been stable on apalutamide plus Lupron for 39 months. I was diagnosed in 2005, Gleason 4+5.
Thanks. I will ask my MO in late December when I see him next. He is using my tumor genetics and my response to previous treatments to select my therapy.
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Zytiga failed, starting Xtandi. What to expect for my dad. 
Back on zytiga and PSA doubled?
Zytiga and Xtandi
Zytiga
Re-sensitizing Zytiga and Xtandi
