Resolution of Side Effects after Stopping ADT/Lupron

Well, if you go that route may I suggest a younger RO - early 40’s or so? I say this because most older drs do things by rote; they have a treatment protocol they’ve gotten used to over the years and usually don’t deviate from it no matter what.
Younger drs. Are nurtured on newer techniques and research - in fact, most of them are required to publish and take part in clinical research during their training.
Ask yourself where you might be today had you gotten a second opinion from a younger surgeon- someone who might have taken your age into account. You might never have had surgery at all, right?
Probably ADT, but more likely Orgovyx and not Lupron and perhaps your side effects would have been less. Chances are if you are depressed you are in a funk and can’t be motivated into seeking out a second opinion, and I get that.
But as you’ve corresponded on this forum, I get the sense that you really want a do-over, or at least, change some of your decisions which were made by trusting in your doctors explicitly and not doing enough research on your own. That’s a mistake many of us older guys make - the doctor always knows best!
Well, you see firsthand what that gets you, OK?? At least now you still have the opportunity to take part in the decision making once someone new lays out the facts for you. But you’ll never know if you don’t try….best
Phil

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?

The sacral fractures are from the Orgovyx! So, not from a fall or trauma. As we have learned, Orgovyx can cause osteoporosis which should be monitored for severity during ADT
and if bone thinning is seen then a "pause" for treatment of the bone can avoid fractures.This was NOT done in my husbands case as his bone inflammation was trivialized until the 2 back fractures happened. Be careful with Orgovyx as this side effect is permanent

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.

Thanks for the comments. Lost the use of his legs does not mean paralysis but rather that after 9 months of ADT, he suddenly could not walk nor stand without a walker and also had excruciating pain down both legs ; a CT and MRI confirmed 2 severe fractures in his sacrum with accompanying bone loss. A trauma surgeon in Raleigh inserted 2 screws to stabilize the fractures, but after 7 months, the fractures have not healed due to the "poor quality of the bone" after ADT.

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?

During my 2 years on ADT (lupron, abiraterone, prednisone) in conjunction with proton therapy for Gleason 9 localized PCa with EPE, my red cell count, hematocrit and hemoglobin lowered to a bit below the low normal before a more rapid decline (along with my white count which had previously been stabe) 6 months following the time the lupron should have been out of my system. I had had swelling in my legs due to edema which, for more than a year, had been atributed to the ADT. It worsened and joint pain developed. At the same time other blood work and physiological dysfunctions began to take place. During my time on ADT, I had been out of contact with my primary care doc, an internal medicine specialist. I had the mistaken belief that the oncologist would monitor and address side effects which resulted from treatment. I finally messaged my PCP for help. Long sorry short, she reviewed my case and in short order had me tested for a thyroid issue. The test came back positive for hyperthyroidism. Thirty days after begining meds for that, nearly all symptoms have resolved, including the swelling, joint pain and all blood counts. The lesson I took from this was to remain in close contact with my PCP while undergoing onclogy treatment as there are many other conditions which might cause, contribute or exacerbate symptoms which commonly result from ADT.

You two have really been dealt a tough hand. My hope is that you are able to connect with someone who is able to find the path to address your husband's cancer, symptoms and fractures. My heart goes out to the two of you. I hope you will continue to share the story.

Bill

Great idea getting your PCP involved. I had an apt. with my pcp prior to ADT and Radiation and we agreed to 3 month appointments instead of our normal 6 month for this reason. I get the impression that specialists only care about their narrow slot. What doesn't get talked about is what needs to be talked about. Best wishes.

Well, if you go that route may I suggest a younger RO - early 40’s or so? I say this because most older drs do things by rote; they have a treatment protocol they’ve gotten used to over the years and usually don’t deviate from it no matter what.
Younger drs. Are nurtured on newer techniques and research - in fact, most of them are required to publish and take part in clinical research during their training.
Ask yourself where you might be today had you gotten a second opinion from a younger surgeon- someone who might have taken your age into account. You might never have had surgery at all, right?
Probably ADT, but more likely Orgovyx and not Lupron and perhaps your side effects would have been less. Chances are if you are depressed you are in a funk and can’t be motivated into seeking out a second opinion, and I get that.
But as you’ve corresponded on this forum, I get the sense that you really want a do-over, or at least, change some of your decisions which were made by trusting in your doctors explicitly and not doing enough research on your own. That’s a mistake many of us older guys make - the doctor always knows best!
Well, you see firsthand what that gets you, OK?? At least now you still have the opportunity to take part in the decision making once someone new lays out the facts for you. But you’ll never know if you don’t try….best
Phil