I joined the group about a month ago, and replied to a couple of posts. I realized that I should have introduced myself first.
I had what I thought was BPA and had been treated for years with Finesteride. I went fishing in Alaska year ago and fell on my rear end. The pain in my low back didn't go away, and eventually I saw an Osteopath, who ordered an MRI. My PSA was rising at the time, doubling every three weeks. The MRI showed bone lesions, so I went to UCLA urology.
My PSA continued to rise and a biopsy confirmed the cancer with Gleason 9. I didn't respond well to ADT, and came to understand I had de novo mCRPC. I've been through a docetaxel cycle, which dropped my PSMA to a third.
PSA rose again even with Aberaterone. I'm getting a PSMA PET scan in a week, so I can start Lu PSMA therapy. I'll be switching to Enzalutamide next week.
I'm also started talking with MD Anderson. Once I become a patient, I will be looking for trials to follow the Lu PSMA treatment.
Heck of a fight.
Written by
Javelin18
To view profiles and participate in discussions please or .
Try to see if it is possible to get a direct biopsy or a liquid biopsy to determine the somatic genome and if possible IHC studies , to see if there are mutations which could make the cancer susceptible to drugs such as olaparib, rucaparib, keytruda , or chemo with platinum compounds. You qualify for Provenge which is an approved vaccine which has shown to offer a survival advantage. It is also important to discuss treatment with bone agents (zoledronic acid, denosumab) if you have bone metastases.
I did get germline and somatic genetic testing done of my blood and the local tumor biopsy tissue. It didn't show any BRCA mutations, but 10% of the cancer showed P53 mutation. There is a trial at VA for treatment of prostate cancer showing P53 mutation. I'm not sure after my treatments what percentage of the remaining cancer now shows the mutation. It seems risky to join a trial if only a small portion of the cancer shows the mutation.
My understanding of Provenge is that it is only effective for oligometastatic disease (five or fewer bone lesions). I'm unfortunately well beyond that, and was at initial diagnosis.
I am taking denosumab, along with calcium and vitamin D3 supplements to maintain serum calcium levels while rebuilding bone mass.
It is true that people believe that Provenge may be more effective if it is used early in the disease process, but I have not seen any data (RCT) showing that this is true. I personally will take it at any time.
If the somatic genome has a P53 mutation and there is a clinical trial which may provide an advantage I would seriously consider it. P53, PTEN and RB1 mutations favors cells division and multiplication. A small proportion of this type of cancer theoretically could become a large proportion sooner than later.
Hi Tango. I dug very deep into Provenge before I took it, more so because I was considering paying out of pocket because I was still castrate sensitive snd insurance wouldn’t pay. I spoke to a number of MOs and and researchers and read everything I could get my hands on. The most compelling information I came across was a breakdown of the Impact Trial into subsets of patients based upon their PSA at the start of the trial. Impact is the trial that showed a median 4 month survival advantage with Provenge vs placebo. Not very exciting. However, each sub group with lower starting PSA’s had longer snd longer survival benefits. The lowest subset was under 22 PSA to start. This subset showed a 14 month survival advantage over placebo. This is substantial evidence that the earlier you start Provenge, the better the result.
As I say, I will use Provenge at any time. There are not randomized control studies showing that giving Provenge early in the disease process is more effective than using it when the disease it is advanced. The data you mentioned indicate that this point should be studied.
Well actually I was fishing for salmon and halibut in the late summer in Alaska. I think the fall ruptured my prostate and started the metastatic progression, rather than the typical epithelial mysenchimal transiton (EMT), that normally allows the cancer to escape the prostate.
Any fishing for large fish isn't good with bone mets. I don't want to damage my spine reeling in a big fish.
Then you might recognize Javelin18 is the name of a bass boat. I bought it from the original owner just before learning about my cancer. I still get skunked when I go out. Bought Kevin VanDam’s book to learn about what to do.
Haven’t been out for a while. I’m hoping the Lu PSMA gets my strength back so I can do more fishing.
Wow that's right it is a Bass boat. You are doing some serious fishing.
I was headed in that direction in the 80's and was a big fan of the In-Fisherman magazines and books. But life took over and I didn't fish again until this past summer and luckily I am fine with shore fishing with the Ultra Light.
I can stop by a lake bank for 20 minutes on my way to or from an errand and land 3 or 4 panfish on my Ultra Light they put up a good fight, feel bigger than they are, and I am totally satisfied. It's like a "fix" for an addiction.
I hope you get good results from your treatment and the reality is you will probably suffer from weakness, etc. from treatment side effects but I hope you can get back into fishing the way you like. Not get skunked as you say.
I'm taking it at UCLA. It isn't a trial, but part of the Novartis Managed Access program. UCLA has the program in place, so I didn't have to do anything in the way of contacting the managed access provider or the FDA for expanded access programs.
There is another trial combining Lu PSMA with enzalutamide for chemotherapy naive patients.
The Managed Access program requires at least one prior taxane treatment. Here is a link to clinical trials that explains the program, clinicaltrials.gov/ct2/show....
I also joined in a discussion on the least expensive country for Lu PSMA treatment. In that thread, a user pointed to the FDA expanded access program. I'll find the link to the discussion and reply to this message.
Actually the treatment will be free through the managed access program, after the scan. Im hopeful that Blue Cross will cover the scan, now that medicare is covering it
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.
Newbie - Introduction
Introduction - Wife/Caretaker of Advanced Prostate Cancer Husband
My Introduction - elevated psa, unconfirmed prostate cancer
My introduction and my decision 
Introduction post...Hello from Greeece!!!
