Summarizing: 76 years old diagnosed in May with Gleason 4+4. All 10 samples on the right side were positive with "disrupted" capsule. Since then
1. PSA rose from 7.4 to 9.2
2. Had Axumin PET scan which was clear
3. Decipher test came back .87
4. Invitae found CHEK2 mutation
So I'm starting Orgovyx on Sunday, planned two year duration. IMRT will follow after two or three months of ADT, that followed by either low or high brachytherapy. Is there anything missing here to get the best outcome? I think that this is probably all that can be done outside of trials, of which there don't seem to be any that would fit my situation at the moment.
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bigdoggatto
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I am 65 diagnosed in April with Gleason 4+4. 2 of 12 cores positive with 50% in each core. Bone scan and MRI show no visible spread. PSA 4; did mutation test-no mutations
Doing almost the same as you. Started Lupron June 1. In October will have proton therapy for five weeks and then about a month later either low or high brach. Will have ADT for at least a year and maybe 18 months. Tolerating it good(not great) so far with lots of exercise and light weight lifting.
Got four different dr. opinions and two biopsy result opinions. Read Scholz book Key to Prostate Cancer and the Ascend trial results.
I'm located just north of San Francisco. I'm not being treated at UCSF, but the health system I'm with is tightly tied in with them and has access to all of their trials.
There is an ideal trial for men like you who had a high Decipher score. You would have to travel to Sacramento to get on it. The contact is Richard K. Valicenti 916-734-3089:
At UCSF, I think you may be able to get Xtandi with Lupron along with your RT. Hao Nguyen was running a small trial of that there, which is over, but they may be able to treat you per protocol. There was a recent trial of adding both Xtandi and Erleada to SBRT which had some good results:
Also at UCSF, Alex Gottschalk had good results treating high risk patients with an SBRT boost to the prostate (instead of a brachytherapy boost). It probably has less side effects:
Thanks for these links. The link for the Richard K. Valicenti trial goes to NRG-GU009. My RO wanted to get me in that one, but it is temporarily closed to accrual.
The SBRT boost looks really interesting. I'll definitely see what my RO thinks. If he wanted to do HDR brachy boost he would send me to UCSF anyway.
It is closed to accrual only temporarily while they adjust the protocol. They will be getting rid of abiraterone and keeping apalutamide. It is a mistake, imho, caused by their misinterpretation of the outcomes of another trial that used the combination. I won't get into the weeds, but even with just apalutamide, I think it is a very good trial.
I think it is a good idea to talk to both Joe Hsu (HDR-BT) and Alex Gottschalk (SBRT) about the boost.
Is there any hint as to when the trial will be reopening, and would the protocol require me to have had no treatment to join? That is would starting Orgovyx now preclude me from doing if it reopened in say a month?
How does one go about "talking to" Drs. Hsu and Gottschalk?
I had Gottschalk. Here’s a tip. Phones are awful, they take forever to get back to you. Register with them on MyChart and communicate/message or make appointments that way it goes way faster
There's no indication of when the trial may reopen. The medical group my MO and RO are with is a recruiting institution. You have to enroll within 60 days of starting ADT, so it could time out for me. Even then it's 50-50 whether I would get the additional drug. Apalutamide and drug like it are not approved for my cancer stage, but abiraterone might be. ASCO guidelines say it should be offered in addition to ADT for "locally advanced" patients (I'm not totally sure that I would fit that description, though do fit NCCN "very high risk"). But, they are addressing ADT generically, and so don't address relugolix. Regarding relugolix, NCCN states "Relugolix has not been adequately studied in combination with potent androgen receptors inhibitors such as enzalutamide, apalutamide, darolutamide, or abiraterone acetate". Before I approach my MO with this question, do you have any insights?
I heard it will reopen soon from some doctors involved in it. But I have no idea when "soon" is.
Abiraterone is not approved for high risk. You can only get it on a clinical trial. You are not locally advanced because you have no known metastases. They are right that combos with relugolix have not been studied, but it is much the same as degarelix (GnRH antagonist), so I can't think of any reason why it wouldn't combine in the same way. I know a man with metastases who is currently on both Orgovyx and Zytiga.
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