Intro: I was diagnosed at 56 in 201... - Advanced Prostate...

Advanced Prostate Cancer

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Intro

scarlino profile image
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I was diagnosed at 56 in 2012. PSA 8.0 Initial biopsy showed positive cores with Glesason 3 + 4. Sent biopsy to Johns Hopkins which read it 4 +5. Went to MD Anderson. Evaluated treatment options and third read was 3 +4. CT showed one pelvic lymph node was slightly enlarged,but not enough to be considered a concern. Decided to do Proton radiation plus 6 months lupron and 30 days casodex. PSa dropped to <.05. Stayed at that level until March 2015, when it jumped to 2.5. Doctors decided to re-test in 6 months in that may have been post treat spike. Returned in Sept 2015 and PSa was at 28. Chemical Failure of treatment, so it seemed the Johns Hopkins read coupled with the slightly enlarged lymph node were indications cancer was likely already out of prostate bed. Started in November on Degarelix (Firmagon) - Psa at 38. Currently PSa at 0.7.other than a little fatigue, lack of libido and minor sweating no other side effects of note. Also engaged in Clinical of Cabozantinib to see if it prevents further cell migration. Started at 60 mg, which side effects were horrible. Reduced to 40 mg which now makes things tolerable, some minor joint pain and a little increased lethargy. I continue to run my Commercial cleaning business and have moved to a more Mediterranean diet which i think helps a lot. And i pray a lot!

I haven't seen any posts on Degarelix in place of Lupro/Casodex.anyone else on that therapy and what are you experiencing? Thanks and blessings to all - Steve

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scarlino
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noirhole profile image
noirhole

I was diagnosed in August 2014 at the age of 55. All 12 biopsy cores positive Gleason scores of 9's and 8's, positive lymph node involvement, and bone mets. Trifecta all within a couple of weeks. PSA at 12.5. Had no confidence in my urologist at home so went directly to MD Anderson. Also enrolled in the Cabozantinib trial which started with Degarelix and now on 6 month Lupron. The 60 mg Cabo kicked my butt with mouth sensitivity for all foods and drink except the most bland of foods and water. Huge blisters on my feet to the point I could hardly walk. Dropped to 40 mg which fixed the mouth sensitivity but to get rid of my feet blisters and pain issues I had to go to a 5 day on 2 day off regiment which eliminated all side effects. This went well for almost 15 months at which point the bone mets were greatly improved but soft tissue was showing progression (lymph node enlargement as well as prostate tumor pressing on my bladder wall) on the scans and my PSA which had dropped to 2.4 was on the rise back to 12. So out of the trial and now on my 5th round of chemo at home which I have tolerated very well. PSA has dropped to 3.7 and tumor has shrunk eliminating urinary issues. I don't miss my 6 week trips to Houston which was rather expensive but I miss the team. Good luck !

scarlino profile image
scarlino in reply to noirhole

Same to you. Sounds like you have a much harder hurdle than I at this point. I hope for you your treatment goes well!

JoelT profile image
JoelT

Scarlino,

In reference to your question about Degarelix (Firmagon) it is a better treatment than Lupron etc. It is much more expensive and so some insurance companies "Balk" about paying for it.

1- New Data on Long-Term Use of Firmagon® (degarelix) For Men with Advanced Hormone Dependent Prostate Cancer at:

advancedprostatecancer.net/...

and

2- Study Results Provide Evidence for First-Line Use of Firmagon (degarelix) in Advanced Prostate Cancer

advancedprostatecancer.net/...

Joel

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