Interesting story from the oncologist, and also my experience with Trimix.

[Dreamweaverman]

Hey Fellas, Hope everyone is getting on well. I wanted to share a story my medical oncologist told me the other day regarding PSA levels post-surgery. So many of you already know my 3-month post-surgery PSA test came back at 0.7. In discussing treatments, the doctor told me about another patient who had a slightly higher PSA level than I had post-surgery, 1.0 The patient opted to do a PET scan and they found that he had a spot on his collarbone and that the prostate cancer cells were coming from that area. So instead of radiating the prostate bed they treated the neck area. I was totally surprised by this and did not previously know that prostate cancer could exist in another part of the body. Moving forward, I am scheduled for a PET scan on Monday, December 3rd and if all goes well, they will only have to treat the prostate bed in addition to hormone therapy. I am not looking forward to this, but I remain grateful that technology is growing around treatments. On another note...I had my first Trimix treatment for ED/sexual function at MSK this week and was trained on how to self-administer. I have to admit seeing my member come to a full salute after 4 1/2 months of limp and partial erections was very satisfying. I always knew that sexual function is very important to me and that I would need to do all I can to ensure function recovery, but the psychological effect of physically seeing and feeling this experience was very satisfying and gives me lots of hope. I am committed to following Dr. Mulhall's advice and am currently reading his book on sexual rehabilitation post PC treatments. I will post more as I learn more, but I feel as if we are all in this together and it is my hope maybe some of this information can help someone on their journey.

[gamma909]

Unfortunately PCa can exist outside of the prostate and often appears in bones. From the PCa survivors I have spoken to with elevated PSA, they also have opted for PET scans in order to assure that treatment was appropriate. Good luck.

[dentaltwin]

Thanks. My RP was at MSK, and the discussion of penile rehab was...minimal. Prescription for sildenafil. I know one of the guys here posted a youtube video about penile rehab--I'll have to grab some popcorn and watch.

I'm generally not squeamish, but the idea of self-administered penile injections sounds--interesting. Have you done it yet? How did you find it?

My dad had advanced prostate cancer for many years, was on AD therapy which kept it in check for the rest of his life; had lung cancer too, and died of neither cancer. I don't know how common it is to be managed effectively long-term on AD therapy, but even in advanced cases it isn't necessarily the end of the road. His bone scan lit up like a Christmas tree. One thing added to his AD therapy was zoledronic acid (Zometa). It drastically shrank his bone metastases.

[Dreamweaverman in reply to dentaltwin]

Hey DW, I posted the video. You can probably look through my posts and get it. Also The lecturer in video is Dr. Mulhall at MSK. Have only self administered once in Dr. office. Went pretty well. I’m confident I will be able to do it. Needles are small and very thin. And the results are great for me. Hang in there buddy.

[dentaltwin in reply to Dreamweaverman]

Thanks!

[cpcohen]

>>>

I have to admit seeing my member come to a full salute after 4 1/2 months of limp and partial erections was very satisfying.

<<<

That happened to me 10 years ago, and I still remember the feeling.

. Charles

[jimbay]

Thanks. Please keep the posts coming. I'm in a similar situation and its good to go through this together.