Thanks so much, Southern Comfort.
I have been looking for reports like this since I started my first 4-month Lupron Depot injection on March 28,2013.
Like you I erroneously thought no immediate side effects in early April meant I was one of the lucky ones.
Sounds like I may be in for more fireworks on 4th of July.
I read something recently where small hot flashes are reminder that helps quiet the nagging concern of "Is the Lupron working?".
Not coincidentally, I finally had the electrician fix the ceiling fan in our bedroom this morning. Was not a priority util after 4 weeks on Lupron.
I have not been on Casodex and the initial flare was apparently pretty mild. I have never had urinary symptom and symtoms the first couple of weeks of April sans Casodex were just one or two nightly trips to pee at night, no problem with flow etc.
I am about
to have the bone density scan and start of Xgeva rather than Zometa, but apparently both have the same SE's with respect to jaw problems if major dental work like a crown or heavy duty dental hygienist work (up to date on that, plus on shingles and flu shots).
My PSA has never been a good indicator other than the doubling rate, and I had been being treated for low-T. So will augment those ultra-sensitive PSA tests with quarterly bone scans.
So between stopping the daily Axiron and starting the 4-month Lupron, my T is already down to 24 after only 4 weeks, effectively chemically castrated at least temporarily where bench mark is T=20, and only 4 weeks in.
PSA also down from high of 3.68 in January (plus whatever the flare was due to no Casodex) down to 0.90 after 4 weeks. Hopefully that will nadir at <=0.003 within 12 months, possibly much sooner.
My libido symptoms are like yours, spirit is willing but flesh is weak. I am blessed with a very supportive spouse and we have discussed the sexual SE's. In one of his videos, Dr. Myers warned that after 12-18 months on ADT, testicles will be size of large raisin or small walnut rather than the grape you can relate to.
To whoever said no vitamin V, everything I have read says continue the Viagra, Cialis or whatever, even if no apparent results after stimulation. I will build it and they will come.
If I do get to tearing it will be a throw back to when I first met my spouse in college in late 1960's. I was trying hard contact lenses and tearing and she thought she had met a warm and sensitive guy.
With respect to training, I do have a prostate cancer survivor buddy who I bike with twice a week, but need to crank up my walking and weight lifting. On the former I will get that in June and July when I visit grand kids in Calif. Maybe some of the latter too as they get harder to lift each year.
I try to do Sudoku and Cyptography every day to maintain cognitive function.
I am enrolled in Univ of Florida & Shands Metastatic Disease Program due to Oligometastases (<= 5 distant bone mets, in my case a total of 5 in a total of 3
locations). Less than 1% of us have bone mets on initial diagnosis rather than as result of recurrence, and I win every contest I enter.
My medical oncologist is very main stream. For example when I mention QCT instead of DEXA bone density scan or F18 instead of regular bone scan, he prefers to save them for when we ultimately get closer to proton therapy, SBRT, chemo or whatever the treatment du jour is when I get there.
I suspect it may be to keep my spirits high thinking that I am dealing with 5 distant tumors and no lymph node involvement and measuring progress against that bench mark, rather than overwhelming me with the microscopic ones that are almost assuredly there too.
Since I have no symptoms other than the bone scan mets and Gleason 9 (4+5) biopsy, my instruction are to continue same course and speed on Lupron (and possibly Xgeva). There is no indication whether I will be 6 month, 12 month, 36 month etc but I suspect someday we will try to get to IHT rather than continuous.
Timing was great and I will heed your advise about
mind and spirit over matter, Southern Comfort. Thanks again.
Diagnosed @ age 64 Feb 2013 PSA 3.68 (6 mo velocity) Gleason 9 (4+5)
T1CN0M1B a/k/a D2 Adenocarcinoma w. 7 of 12 cores worst ones 70% right perineural Invasion PNI
Oligometasteses 5 tumors 1 right sacrliliac, 2 thoracic vertebral bodies (spine), 2 right posterior ribs
Began Lupron 4 month 03-28-2013.
PSA after 28 days 0.90 w free PSA 0.22, T=24
In UF & Shands Metastatic Disease Program
Post Edited (T1cN0M1b-in-FL) : 5/2/2013 10:13:08 AM (GMT-6)