← Return to Living with Prostate Cancer: Meet others & introduce yourself

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@erkbiz

An Introduction of sorts

Hello, I began my treatment with Firmagon, April -June. In July I received a 6mos dose of Eligard, on August 8 I will meet with radiology.

My doctor said he didn't think the cancer had spread and tests confirmed his belief. He did say that he discovered some gleason 9 tumors. A blood test in July showed my PSA has dropped from 11 down to 2, my doctor says this is good. I have read that PSA should go below 1 but this can take up to 5 months to happen. I meet with my urologist in October.

Side effects have been minimal but instead of gaining weight I lost 5 pounds and after the Eligard shot I became constipated, (currently dealing with that). I am optimistic about the future.

Regards,
erkbiz

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Replies to "An Introduction of sorts Hello, I began my treatment with Firmagon, April -June. In July I..."

Welcome @erkbiz, I moved your introduction post to this discussion where you'll meet the gang, including members like @norske46 @jimlinse @waynen @stoney @jap57 @kujhawk1978 @jimcinak @round5 @bobulmer46 @kchris5174 @nishok and many others.

- Living with Prostate Cancer: Meet others & introduce yourself
https://connect.mayoclinic.org/discussion/living-with-prostate-cancer-meet-others-introduce-yourself/
You'll also find several discussions specific to treatment with Eligard and Firmagon. Simply use the Search function.

Are you concerned about the weight loss?

Erkbiz,
Welcome to Mayo Connect. There is lots to learn here. Your post was a bit non specific about some things and I think others here can present a clearer response with more clarity from you. For example:
What's your age? - QOL - What we consider Quality of Life is different at 75 than it might be with a PCa diagnosis at 55.
"..tests confirmed his belief". What tests were those? there are a variety of scans, some which are more diagnostic than others. Some docs may be limiting themselves to what the tools that are readily available in their facility. There are also genetic tests, some of which 'measure' the aggressiveness of the cancer. Some also measure whether the cancer is hormone sensitive.
"He did say that he discovered some Gleason 9 tumors" Sounds to me like a prostate biopsy? but biopsies come in a variety of 'flavors'. Traditional urologists would do ultrasound guided biopsies. Dr. Mark Scholz of the Prostate Cancer Research Institute (pcri.org) like to call these random biopsies. There are also "fusion biopsies" which use high quality MRI data merged with active ultrasound data. There are suggestions that these are much more precise.

I strongly encourage you to explore this website to understand radiation options. Traditional radiation (photons) can be delivered in a variety of ways (SBRT, etc) and yet some facilities may not be doing that. PBT (Proton Beam Radiation) is considered by some to be more precise and less damaging to other tissues. (lots on this at PCRI).
Also be familiar with SpaceOar (Organs at Risk) - an 'agent' that is inserted internally separating the bowel and the prostate - helping to minimize injury to other tissues. (I was surprised to learn that in my community of 100,000 people that the urologists here only do SpaceOar insertions quarterly when enough patients are on the list and when a rep from the SpaceOar company can come)

Also a comment in general about ADT (Androgen Deprivation Therapy) into which I think Firmagon and Eligard fit. watch: https://youtu.be/E_zZ-lG6eeY Strongly suggest that ADT should be accompanied by an active strengthening regime. Your weight loss might not be so positively seen if it represents some muscle loss.

Also, below this comment and your intro etc see the comments of kujhawk1978. He really offers a lot of overall wisdom. Bottom line, get educated, ask your doctors what they know about other treatments than what they may offer and that may not be available in their facility.

I have posted lots of details elsewhere about my journey. But in the briefest synopsis: PSA 8.3 August 2019. Better quality MRI showing tumor. fusion guided biopsy Mayo/Rochester November 2019. Proton Beam Treatment (5 sessions) Mayo/Rochester Jan/Feb 2020 followed by 4 months of ADT. Since late 2020 my PSA has been measuring >.10 which is considered undetectable. Self labeled not as 'cured' but in remission, and I hope it lasts the rest of my life (age 73 now).

PS: pcri.org is a great reference with many videos on Youtube. Prostate Cancer Foundation is another resource with a downloadable guide. (however, be careful, as they have what I think is an unwarranted prejudice against PBT (proton beam radiation).