I have been watching this forum a few months and learning a great deal.
I was diagnosed in October 2021, Gleason 8, cribriform, pni. Started firmagon and zytiga in early December.
Decided that HDR + Ebrt was my best radiation treatment option, primarily because a median lobe presented issues for seed therapy according to Johns Hopkins RO. Have been battling insurance to approve doctors, and finally have options.
Wanted to know of feedback on Dr Alvaro Martinez in Detroit. I understand that he may be the person who developed many of the current HDR protocols. He is an option for hdr (scheduled for Feb 9). Other option is Dr Mark McCord in Alpharetta, Ga -.which is only 1 hour away. It’s a long story how these two options 700 miles away became my two options. But I am anxious to get started.
Any feedback?
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Gatodd
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I was hoping I would get your reply. JNF (Jack) told me about Dr Martinez, but I had fee others who were very familiar. Jack suggested I reach out to you on questions. Thanks so much. My mind is much more at ease!
Hey Gatodd! I was a gl.8 in 2015 ,1 shot of Firmagon then Lupron until 2017 orch dropped the Lupron . I did 8 wks imrt . I’ve flown under the radar over six yrs now . . I’m still taking tak -700 pills stopping adrenal T .. Let Martinez save you . Eat healthy and work out !
I was gleason 8, 4 by 4 with no spread, two of twelve cores with the bad stuff. On Lupron since last June, did proton therapy for five weeks in October at UC San Diego, (not going to get into the debate about whether protons are better but if you have to have treatment La Jolla is a nice place to stay for five weeks), and in November had LDR brachytherapy at UC San Diego.
Minor side effects. Worked during the treatment except for two days after the brachytherapy. Can detail the side effects if you really want to know. Last PSA a few weeks ago after treatment was 0.05.
Planning on ADT for at least a year total.
Check out prostatecancer.news where Tall Allen has compiled a lot of great information. Since I have seen some edgy posts I will write a disclaimer saying that I have never met Tall Allen and have no interest in promoting his web site other than he has some good information.
Sounds like you are on the right track with the triad therapy.
Thanks. Doing all those things. Working out more than I did when playing college sports. Will be on adt for 2 years given decipher score of .79. Only been 2 months. Not much fun, but tolerable.
Should have thought about California as treatment option in February. Guess I’m not that smart!
You are smart enough to do the triad. If you really want to get into the weeds check out the info on the Ascend RT trial. Fits us pretty much. You can start with the info on Tall Allen's website and then go into the actual trial info if you really want almost too information.
Thanks. I knew the triad was superior and had to overcome some earlier hurdles to get there. Johns Hopkins did not recommend seeds due to median lobe due to risks of long term urinary complications. One HDR doctor was concerned about bleeding in median lobe area and did not recommend. But 2 other HDR specialists were not concerned about those risks.
Good to see the actual quantification of potential improvement in the Ascede RT papers. I guess the trade off is highe GU toxicity. Has there been anything that reduces some of that risk?
Not sure about what can reduce some of the risk but the stat is 19% have problems which means 81% don't. I try to be an optimist and hope to be one of the 81%. No real problems so far but it is still early.
You will probably read this after you are done. First day a little sore where the doctor went in but no need for any pain meds. Procedure started at 7:30 and I was out of the hospital at 11:00 a.m. Went out to lunch at a restaurant and then just took it easy all day. No activities. Just watched TV and read.
Next day drove 100 miles home. Two days later back to normal activities including work, exercise, golf etc.
Prescribed Flomax and still taking it. This is February and the procedure was done last November 15. No issues with Flomax except I go more than I did before as seen below.
Two weeks after procedure had extreme pain urinating for two days and it was hard to do. Had to really force it. Gradually got better and after one week went back to normal during the day. No painful urination after that. Started drinking more water which seems to help. Also, drinking three beers before dinner but that wasn't prescribed. Brought it up to the doctor and he didn't have a problem with it.
Main side effect I am having is going 3 to 4 times at night, sometimes 5 depending on how much liquid I drink at night. Used to be 1 or 2 times a night. Kind of annoying but no big deal. Probably could stop it or slow it down by drinking less liquid after 6:00 p.m. That is the only small problem I have now which I don't think will go away until the Flomax goes away. Seeing Doctor on March 1 and hopefully will try to go off of the Flomax then.
Thanks very much for the information. My RO had me start Flomax last Friday. I have had no side effects, but it really works to improve flow! I never get up during the night to urinate, same so far on Flomax. What dosage are you taking? I'm taking one .4mg capsule per day. So, no bowel problems? Did you have Spaceoar?
Hopefully, your procedure has gone to plan, like mine did last November. I had HDR Brachy tho. Was back to work two days later. Perineum was sore for about a week.Had an issue with restricted flow immediately after, even with Flomax. For next two weeks did Flomax twice every 24 hours (at RO's advice). All's been good since then, except for some swelling of ankles, which comes and goes. Working on that with help from my GP/Primary.
Why did you decide against prostatectomy? I had imrt and brachy and it was a disaster for me. Obviously it works out well for many. I think my doctor sucked. But i am curious if you are a surgery candidate? I wish i had got surgery with Dr Partin at JHU when i had the chance.
I met with Dr Allaf (surgeon) at Johns Hopkins. He said he had looked at my cancer and described it as “very angry.” He indicated that, in his opinion based on looking at the cancer, considering Gleason 8, cribriform and PNI, surgery had about a10-15% chance of a 1 and done cure.
I decided that if the significant probability was that I would need ADT and RT anyway, why deal with the side effects of these plus the side effects of surgery? Dr Allaf completely agreed with that conclusion (and said he would have recommended no surgery if I had not come to that conclusion).
Seemed like an easy choice to move to RT. ADT, brachy plus Ebrt has the highest success rate for non recurrence.
The doctor did. About two months after brachy, i had very weird feelings throughout my body, I’ve never felt it before and haven’t felt it since. That was in late 2015. Then two weeks later my psa started rising and then started speeding up faster every two months after that. Belle brachy, my psa was 10, six months later it was 38. The idiot radiation oncologist told me when the psa was at 18, that it might just be a bounce! I told him, that no radiation bounce has ever been recorded, that was higher than 1, but he thought an eight point raise in psa might be a bounce!
I’m petty certain that the sickness two months after was due to the prostate wall being burned through by radiation, causing the cancer to release into my body.
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Hmm... Why am I on Zytiga?
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