Intermittent Hormone Therapy (IHT): How is it working for you?
I thought it is a good idea to have separate thread on Intermittent Hormone Therapy(IHT), so we can all learn from other's experiences.
Who in here are currently on IHT and if you are, please share about your disease specifics and how it is working out for you as much as you can.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
My initial PSA was 28, Gleason 9. I think that's why my doc wanted 3 full years on Lupron (after the 6 weeks of radiation).
There are so many variables, so there's no one answer as to how long a person should be on Lupron. Age, PSA, Gleason score, tolerance to ADT, results of scans, etc. etc.
Thank you for sharing your experience. I’m also on ORGOVYX and have another 10-1/2 months to go. The last time we checked, which was two months ago, my testosterone was still at 38 and my PSA was undetectable. I’m also on ZYTIGA. I had a one week vacation because the side effects from ZYTIGA were so bad and in only five days, I felt 300% better. I know I need ADT to keep cancer at bay, but man, I’m looking forward to getting off of it.
Happy to post publicly, I just didn't think of it for some reason...I guess in my brain this is already scattered all over the forums...
I never saw a Decipher Score, don't think one was done. Right before surgery my PSA was 13 and my Gleason score was 7 (4+3). My MRI showed nothing outside of the prostate.
09/02/21 Surgery
Post surgery lab showed "Perineural invasion, and Lymphovascular invasion Stage pT2c" the right pelvic lymph node was removed as well, that was completely negative.
Post surgery I saw these PSA results:
01/26/22 0.039 (Share's high fives with surgeon who tells me "we got it")
04/26/22 0.091 (Get's that "uh oh" look from the surgeon)
This caused a PSMA PET which was negative.
Started Radiation / ADT and had these results The last two columns are total and free testosterone.
08/17/22 0.014
11/28/22 < 0.006
02/07/23 < 0.006
06/09/23 < 0.006
09/09/23 < 0.006
11/30/23 < 0.006
03/07/24 < 0.006
06/03/24 < 0.006 3 0.8
08/23/24 < 0.006
11/09/24 < 0.006 82 2
Stopped ADT on June 1, 2024 and the doc is ready to go to 6 mos check ups now.
So... 4/26/22 is why I might be a little pessimistic 🙂
Well, my story, ADT twice, in Jan 17 in conjunction with triplet therapy and in April 24 when combined with SBRT.
As my history shows, spread has been to lymph nodes, no organs or bones.
Still, pretty aggressive - GS8, GG4, 18 months to BCR, PSADT and PSAV.
The first tine was Lupron. Original plan was 24 months in conjunction with chemotherapy and WPLN radiation. There was data in various clinical studies about the duration - 18, 24, 36...Kwon was ok with stopping at 18 given my response.
The 2nd time was Orgovyx. Again, data from clinical trials all over the map, 6, 12....my radiologist said in the tumor review boards the oncologists were all over the map as to how long and why.
My oncologist advocated for 24 months and add Xtandi. I pushed back since I was thinking g six months, no Xtandi.
We "settled" on 12 months Orgovyx, only add the Xtandi if PSA did not drop to undetectable in first three months (it diid), labs and consult every three months and decide at 12 whether to come off or continue.
We met at 12, I argued for stopping. My radiologist agreed knowing I would do labs and consults every three months and would be open to ADT and ARI for 24 months when it came back (and SBRT if possible). My oncologist gritted his teeth but was ok with it though I could tell he advocated for 24 months. At our follow up consults he puts that in his visit notes...!
Was I right, no way of telling. We can't run parallel "me's" to test my decision. We're nine months in and so far, good.
Do I fell better, yes, gone are the hot flashes, fatigue, muscle and joint stiffness, and genitalia shrinkage (never lost the libido, someday medical researchers are going to figure a solution for women, until then..)
Is there a difference in my level of physical activity, no, just feel better doing it (at the gym as I type). While on the Orgovyx I rode the Garmin Unbound with my sister, went skiing with friends in Colorado, wife and I took vacations to Oregon and Iceland..
So, is IADT a possibility, yes, Discuss with your medical team, have clear criteria for coming off treatment, actively monitor while off and clear criteria for going back on..
Kevin
This disease is a real head scratcher….My diagnosis was almost identical to yours: No Decipher test, Gleason 4+3(unfavorable), no spread with PET, extensive PNI - but NO lymphatic involvement.
I had surgery and it took a full 5 yrs for the PSA to hit .18…yours recurred much faster.
We both had salvage radiation and I’m on ADT for six months and you’re on for 24 months. Of course, time will tell if 6 mos is enough for me as they will do PSA every 3 mos….sure hope so!
But your rapid rise in PSA post surgery has to speak to the more aggressive variety as opposed to mine, which took 5 years. Too bad we did not have Decipher Scores - that might have solved the riddle.
But I do feel your longer course of ADT was a real life saver!