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← Return to Resolution of Side Effects after Stopping ADT/Lupron
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Resolution of Side Effects after Stopping ADT/Lupron
Prostate Cancer | Last Active: 4 hours ago | Replies (55)Comment receiving replies
My husband was diagnosed with a Gleason grade 9 prostate cancer nodule ( that had NOT spread outside of the prostate) and was treated with 9 months Orgovyx and 28 days of targeted radiation. The Orgovyx caused severe joint swelling and pain (along with the usual hot flashes , erectile dysfunction and organ shrinkage) and severe drop in RBC count, hemoglobin , and abnormal liver enzymes. Our doc insisted he stay on Orgovyx but my husband lost the use of his legs at 9 months which we eventually learned was due to 2 severe bone fractures in his sacrum which will NOT heal. He now has a blood infection due to depressed immunity but the risk/benefit of this ADT treatment was never discussed with us. I do not think the Testosterone numbers really say anything about the recovery times after ADT. Any info after stopping Orgovyx ( we are now 7 months since stopping) but side effects like fracture , loss of libido and anemia seem permanent. Any info for this caregiver?
Replies to "My husband was diagnosed with a Gleason grade 9 prostate cancer nodule ( that had NOT..."
Just a few observations:
It would be unusual for "loss of use of legs" (if you mean he is paralyzed below the waist) to be due to sacral fractures. The nerves affecting motor function of the lower extremities exit above the sacrum. Does he have any fractures in the spine elsewhere? Sacral fractures can be difficult to heal but can be treated by an Interventional Radiologist doing a procedure called sacroplasty. Using CT guidance, a needle is placed into the fracture and cement is injected to stabilize the fracture. This is performed for unrelenting, persistent pain for fractures that won't heal after a few months.
The whole purpose of any ADT medication (Orgovyx/Lupron) is to severely lower the testosterone level. How long the T stays depressed is mainly dependent on: 1) patient age, 2) length of time on ADT and 3) the T level prior to beginning treatment. Older men (>70) may never regain normal (>250-300) levels of T. Once T level becomes normal, most men regain libido. It may take time, exercise etc to build bone mass if the T levels return to normal. I do not know about the anemia.
Reportedly, men tend to regain T levels faster after discontinuation of Orgovyx than Lupron.
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My case study is amazingly similar; i.e. Gleason 9, Orgovyx nearing 9 months, 5 weeks/ 25 fractions- IMRT PROSTATE RADIATION and no metastasis. I am 2 months post radiation.
Orgovyx side effects have been mostly hot flashes that have now greatly subsided.
I had a sigmoid colon resection more than 2-1/2 years ago followed by a year of diarrhea. Now since radiation, the diarrhea has returned.
I am sure that my testosterone is non-existent. My testes have shrunk and erections are not happening ever. I don't even think about it anymore. I guess having no spouse to consider makes that easier.
I am 75. Not too active other than household chores and running errands to shop. I don't have a lot of energy and can sleep anytime day or night.
So overall, and by comparison to most others, I am doing pretty good. My concerns are the eventual return of colon cancer and the metastasis of my prostate cancer. It's all very worrisome.
I am curious as to the causes of the sacrum fractures? I assume that it is not trauma related?
I really want to say that your post was of great interest to me in terms of my own similarities.
But primarily, I do pray that your husband will see great improvement in all ways, including pain relief and increased mobility!
Blessings to both of you!!
PAUL