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Orgovyx.......... not so great. Radiation.....almost pooping my pants!
Hi again, all. I started orgovyx on April 1st. LOL, yeah, April Fool's Day. 🙂
I have experienced dizziness; the first 2 weeks were bad. It seems to be resolving, but it's not completely gone.
I have been experiencing wicked and frequent (every 15 minutes) hot flashes. So much so that during some of them, sweat is pouring down my head, and I soak my shirt. The worst ones come at night. I have just ordered, on a 14-day trial, the Embr Wave 2 and am going to try that after I received this from my urologist:
"With positive lymph node involvement, plan is to have him on at least 1 year if not 2 years of ADT. Whether this be with oral agents such as Orgovyx or IM agent such as leuprolide, hot flashes unfortunately are a common side effect of such medication.
Treatment of hot flashes with ADT treatment can be challenging. Numerous medications are often utilized with variable improvement. Options include Megace, gabapentin, and even SSRIs at times.
I will trial Megace 20 mg daily for now and see how that works for a few weeks. Patient should be counseled that there is a small risk of DVT with Megace utilization."
I chose NOT to go with Megace due to its list of common side effects and opted for the Wave. I am seeing my PCP tomorrow and will ask her for Gabapentin. I am already on an SSRI (maybe ask to increase the dosage?). I have also purchased a small cooling fan for beside my bed and will give that a try.
I am on day 8 of 28 for radiation. The only side effect I am having currently is severe diarrhea about 45 minutes after the treatment. I see the radiology oncologist once a week and saw his substitute today. I keep getting told that "it's awfully early in your treatment to be experiencing diarrhea. That' real helpful. Today I thought I was going to go on the table! I had to run directly to the bathroom after my treatment. I was told to avoid: any fibers, fresh fruits and vegetables, and dairy. They told me to try Imodium, yogurt, and a probiotic.
Opinions?
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@surftohealth88
Just a note about this so people know. If you have BRCA2, you want to avoid radiating your chest because BRCA2 can cause breast cancer and if you have your chest radiated, they will not be able to treat you fully if you get breast cancer.
A radiation oncologist told me that, when I ask about this problem.
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5 Reactions@jeffmarc
THANKS Jeff for sharing this extremely important information !!!
I did not see it ever mentioned in any of those papers and one would think there would be a major warning disclosure about that fact 😵💫 ! Unbelievable ...
This is one of the examples of why genetic testing is so important for PC patents. No doctor is mentioning that fact either. Decipher is becoming more common but the rest of the testing is almost never suggested.
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3 Reactions@surftohealth88
Sadly. We interviewed with a urologist at a national Center of Excellence, who told us (pre-RP) there was no point in genetic testing.
Thanks, but no thanks, wow really? !!!
@klein505
You see : ((( !!!
Honestly, person just has to rely on oneself, it is so scary and discouraging.
Not only that we have to worry about having terminal illness but we have to fight to get tests done and also spend months studying this disease and learning all about different procedures that might be involved in treating it !
We had to resort to asking for different tests from different members of a "team" to get some basic things done. One wold say *nah, you do not need that , than the other would say *oh of course, here is the order , than for the next test it would be the other way around etc., etc. - it is soooo exhausting ! Today we payed for testosterone level test on our own so that we have a baseline since I got tiered of asking for tests. I mean, we have no problem doing that, but one has to wonder in what way it is not good to know your baseline level of testosterone and it is a cheap test *sigh ? I know that they are busy, but my husband is also busy (maybe even more) and has a CANCER on top of it 😣.
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6 ReactionsI have always said we need to be our best advocates. My urologist (at the time, he retired) told me I had a "lumpy" prostate for 5 years. All he did was put me on a med to lower my PSA. In the 6th year, he said it, I INSISTED on having a PET scan. Then it comes back, and I have Gleason 9, out of the prostate into the lymph nodes, prostate cancer. Lost one set of nerves as well, and now 2 years later on ADT and radiation.
BE YOUR OWN BEST ADVOCATE
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6 ReactionsI have been on Orgovyx for 4 months now and just completed my 6th of 38 sessions of radiation at 2.25 grey per session. I have noticed I am more lightheaded and have had some hot flashes but with all the things adt has done to me I could not say it is the radiation or combination. I have hypersensitivity in my pelvic area and I have not seen a change in my normal pain level. I was informed I would most likely have bowel issues from the radiation and most people have it go away after a period of time.
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2 Reactions@pamperme I too have the lightheadedness, and my hot flashes are still pretty intense. However, I seem to be tolerating them better, or maybe I'm just ignoring them. 🙂
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4 Reactions@pamperme
I had almost the same number of radiation sessions you’re having. I had absolutely no side effects at all. The side effects you describe are quite similar to what ADT causes. ADT Can cause joint pain. Never had any bowel or urinary issues. The lower dosage per session seems to really reduce the side effects. People who have 20 sessions seem to have a lot more problems, they almost always reports cystitis.
I know that some people that had radiation at the same time that I did, did have fatigue after it, But I don’t know how many sessions they had or what their Specific situation was.
That pelvic hypersensitivity sounds like a radiation issue, Not really something reported with ADT.
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2 ReactionsIf it has not been suggested yet ask your Dr. for some Ondansetron. I've included the link below
https://www.drugs.com/ondansetron.html
It's great for getting rid of nausea etc. but it can help with the Upset Stomach also. I had to take it once for extreme Nausea unrelated to Cancer treatment.
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1 ReactionHow the wearable device work? What about the megace? I have been there, not fun. Cold packs works real well fast.