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What's your experience with Orgovyx (relugolix)?
Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...
Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.
PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.
PSMA PET CT showed nothing.
Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.
Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.
I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?
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No, sorry about the shorthand. My initial treatment (and only treatment thus far) was five fractions of radiation treatment of the entire prostate gland called stereotactic body radiotherapy (SBRT). That was combined with androgen deprivation therapy (ADT) using the drug Orgovyx, which my radiation oncologist started on the first day of radiation treatment. I'll be on that for a total of six months which for me will end early January 2024. My side effects have been manageable. I attribute that mostly to a healthy diet and daily physical activity. Best wishes and please feel free to reach out if you have any additional questions!
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1 ReactionMaverick75:
Or was this your primary treatment (radiation) for the prostate cancer?
Maverick75:
An I understanding your msg: You are having Salvage radiation treatment for BCR together with 6 mos Orgovyx?
Apologies; the acronyms are not always clear to me.
I have my 1st PSA test this morning following salvage tx after prostatectomy. My treatment was 38 sessions of IMRT radiation to the whole pelvic floor and pelvic lymph nodes together with 4 mos Orgovyx, so I am very interested.
Congratulations on the undetectable PSA result.
I've been on Orgovyx for almost 4 months now on a 6 month treatment plan. I'm localized, 4+3, .69 decipher, 70. Treatment at Mayo Jax. I started Orgovyx on my first day of SBRT. I asked for a T-check blood work at the 15-day point just to be sure it was working as advertised-- it was. Was having problems sleeping with the hot flashes and some depression. Doc added Venflaxine which has helped significantly. Just had my first PSA check Friday post SBRT. PSA was undetectable! All going well. If the science showed a longer dose of ADT had significant benefit, I'd go longer. However, my RO believes we are being aggressive with the 6 months of ADT so I plan to stop in January.
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1 ReactionSorry about the typeo's
My Experience. When I first found out I wes scard sh..less. I read a lot and spent lots of time on discussion groups. I had a second opinion on my biopsy and it was downgraded. So make sure you get a second opinion from a reputable place. Had a PSMA that came back woth no spread outside the prostate. Orgovyx thus far 1 1/2 months in is very good. I'm 74 with Medicare/BC plan 65 and BC RX. My copay is just $15. I have had a few minor hot flashes lasting only seconds. Barely noticeable.
Helpful information might be that I'm Gleason 3+3 and 3+4 in two cores. I take .5 mg of Lexapro, B Complex and Vitamin D daily. I walk my dog about two miles per day and play tennis at least 3 times a week. So far I have not had to slow anything down.
Space Oar and fiducials put in this week. Very uncomfortable for 36 hours but then took my normal walk. Mold and CT simulation next week then on to SBRT a few weeks later.
The hardest part for me became the waiting. Even now, I can get specific dates for the SBRT. This makes it difficult to create a plan for where we will live during the process.
Hope this helps a bit.
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1 ReactionDefinitely good to know thanks Colleen! I hope to only be on Orgovyx for four months but you never know what's around the bend. The last prescription they charged me 'only' $600, half the original co-pay. The problem is they never give you any clear information, no matter how many times and who you ask. After 40+ years of employer provided insurance and full benefits, I can only say that Medicare is vastly more complicated and difficult to navigate.
Oncology social work is an often overlooked service offered at large cancer centers. @seasuite you may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
Your oncologist or member of your cancer team can refer you to social work.
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1 ReactionI'm not familiar with that role. Can you provide details on how to make contact?
@seasuite, did you have an oncology social worker help with the submission? Sometimes they can make headway where an individual cannot.