In my previous post I wrote after 17 months of Stage 4 my T was at 64 from all being <7. I found that out thru Univ. of Chicago recent labs . I have both V.A. and U of C MOs . I had a talk with my U of C MO yesterday and he was happy to retest T next week for my piece of mind. In the17 months of being Stage 4 , Oligometatastic I had 2 T draws from V.A . The last one from V.A, was 08/03/22 . I had a total of 7 T labs from the U of C , the last one 07/07/23 where my T hit 64. I have not told my MO at V.A. about this 64 T score . Im due for Labs with V.A. Aug. 02. So I send her a note that if you can include a T lab if you havent already included it . This was her response .
Quote , " Your T levels were completely suppressed at that time , on 08/03/22 as expected from your Eligard injection . We do not obtain routine monitoring of T for most men but especially for men taking Eligard . There is no indication to repeat because the level will continue to be extremely low as it was before since you are still in treatment "
This is why I have 2 MOs . I knew one day I might have to make a decision deciding my treatment going forward . I have Dr. Szmulewits at the U of C . I meet with Dr. Henry at V.A. Aug. 9th . This may be my last visit with her . What you all think ? Thanks , SemperFi , JJ
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Allen V.A has not checked my T since August , 22 . And she dont plan to anytime soon . U of C is giving me a retest next week . I might have to stay with University of Chicago , Dr. Szmulewitz and drop her , Dr.Henry , at V.A as MO.
Allen the point is V.A. had 2 T labs in 17 months . U of C has done 7 times . Last T from V.A. was Aug of 22 of 2022 and she does not plan on doing one upcoming on Aug. 02 , so thats a full year so far from V.A and going forward without my Testosterone being tested . Its the testing of my T not the score from the Lab .
She's right that Eligard doesn't stop suppressing T, so there is no reason to keep testing it. Maybe it was a lab error or a bad dose. I'd be more concerned that I'm not getting the full bioavailable abiraterone dose. But I know Szmulewitz did the research on that, so he is protective of his regimen.
Yes Allen , I asked Dr.S if me going on 1000mg of Abi , might make a difference ? I said the 1000mg might absorb better . He said it wont make a difference . Yes thats his baby so he will disagree .I have enough Abi to do 4 pills a day until July 21 the day for the retest . It should be safe to do starting tomorrow .
Back before I was on Medicare, had a $5k deductible, what they bill BCBS for those two were at least double. Now that I have Medicare and UHC supp, after my $266 deductible, most are free. My RO at UC would only order PSA, not T. I also like to get E2, DHT, IGF-1, Prolactin and a few others. I am talking to my Block center people to see if they will order all these. Nothing out of their pocket so dont understand the reluctance. Just gives people and docs more info.
I get my testosterone levels taken at close to 9am every time and they still are as low as150 to a high of 325. Only 300 a couple times but huge swings and I average a test every 2 months. I can feel the difference for sure so the moves are not test mistakes for me.
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