I’m new and this is my first post. I was diagnosed in 2007, had 25 proton and 20 photon treatments at Loma Linda. Gleason 3+4, 4+3, T2B. PSA 12.
All good (PSA 2.0) until became castrate resistant in 2012, PSA rise to 15. Put on Cassodex and Proscar. PSA rise to 15 again in 2014. Went to UCLA for high dose brachytherapy, Dr. said I was perfect candidate. But not, within six months my PSA had risen to 65. Plus my kidney had failed due to excess radiation damage from brachytherapy. Removed kidney, put on Lupron.
Went to Germany for Dendritic immunotherapy. Worked good for two years, it seemed, PSA held at 3.0-4.0.
In December 2017 had a bad sepsis infection which put me in hospital. CAT scan indicated, despite lower level PSA, that my cancer had spread. Significantly to lymph nodes, spots now on lung and liver.
Pain from lymph node constriction on veins led to last weeks three rounds of chemo. That worked- pain gone. Also, over the last 6 weeks, every other organ in my body tested- no other cancer.
But, in meetings with doctors yesterday, they stated the “gene” testing they did produced markers of a mutated prostate cancer. Normal protocol treatments, like XTANDI will not work for me- that is their belief. They said I have 6 months and at this time have no treatment protocol to recommend, but will research.
I’m sitting here feeling rather helpless that I don’t have a battle to fight. Thought I’d reach out for comments, ideas, referrals, etc...
Thank You, Jim
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Sometimes genetic mutations can point the way to certain therapies that might not otherwise be effective. For example, PARP inhibitors or platins for DNA-repair defects, or Keytruda for MSIH/dMMR. did they say what the genetic abnormalities were?
Since you have been to Germany before, you might consider going back for treatment with one of the PSMA-targeted radiopharmaceuticals they've developed at the University of Heidelberg. Here are a few articles (with many more in links) that may interest you:
Thank you- I'm getting my diagnosis files today which include the mutation summary as well as gene foundation report. I'll post soon. Again thanks for the info. Gives me some hope!
You have nothing to lose by trying Xtandi, even better apalutamide...what some here missed is you said your doctors, so we are not just talking about one doc
Wish you good luck, but you know things change pretty quickly around here. I believed PC had metastasized, but scans said something else! Hang in there! Now I am heading for brachytherapy, but I am concerned about radiation, as I had EBRT in 2009. Get second and third opinions, things change as you have already seen!
So sorry. Remember this, none of us have an expiration date. There are a lot, let me repeat, a lot of people still here long after the doctors told them otherwise. What you need is a new medical team- NOW!
Have you considered going to the Mayo Clinic or to MD Anderson? Also, Dr. Hussain, a world prostate expert that used to be at the University of Michigan is now at Northwestern. I am sure that others here have recommendations. Please consider them!
Please get a second or third option. Hopefully there are people here smarter than me who can give you advice.
While I can not give you medical advice (I am a retired grumpy chemist), you have my full support. Everyone here will be pulling and praying for you. Please let us know how you are doing and what your new medical team thinks. We want to know how you are doing!! You are part of our family and we take care of our own. After all, people like us we have to stick together!
Sorry Jim, A lot of men here have been and are now walking in your shoes.
Hubby went to Mayo in Roch, MN in July 2005 for a second opinion. That’s when some ***hole highly thought of urologist told him to “put his affairs in order.” I was witness. Made me mad so I dug in.
I had that bad memory buried a long time and fortunately so did my hubby who just started Xtandi and Has good quality of life.
We put our efforts into finding treatments which you are doing. Plus you have this wonderful sharing place to get ideas and support which puts you ahead of us. Gather your strength.
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Proton Therapy Had PT Therapy 15 years (2009) ago 5 year follow Up No Cancer Just Diagnosed with Mets in Bone/Pelvic Lymph Nodes in 2024
What next after chemo fails
Positive attitude is getting hard! Anyone been here and started something that really worked? Lu-Psma or something? 
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