I’ve posted here before about the weird side effects I’ve been experiencing; shortness of breath, uneven heartbeats, chest pain, frequent urination, back/hip pain, and a persistent cough. I’ve been on doublet therapy (Orgovyx + Abiraterone/Prednisone) for a while (Orgovyx since mid December, Abiraterone since mid-May).
These side effects have seriously affected my SoL, so my oncologist suggested a brief (5 week) vacation from the Abi/Pred., to see if that’s the cause of all these debilitating side effects. I’m continuing to take the Orgovyx. In the meanwhile I’m getting another heart-related test (some 3D CT scan) and may see a pulmonologist if my breathing doesn’t improve.
I guess I’m asking if y’all have gone through anything similar, and had any advice/suggestions for me. I know the STAMPEDE protocol (I keep wanting to write “RAMPAGE”) is probably the best idea for success, but these SEs are making me miserable.
Thanks in advance for your time and input.
UPDATE:
Oncologist sees no reason why I can't stay off Abiraterone as long as my numbers remain good. Last testing my PSA was undetectable and my testosterone was <10. I think I feel better with less meds. Still have aches and pains, but is it my back? Something else? But much more manageable.
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Jpburns
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I have the shortness of breath and urination issues. I would try a strict cancer diet and pectasol supplements during your vacation to keep your numbers down. My doing that allowed my MO to cut m Zytiga dose in half with no detrimental affects.
"... I’m getting another heart-related test (some 3D CT scan..."
Could be related to the abiraterone. 2021: "Abiraterone-induced refractory hypokalaemia and torsades de pointes… patient had been undergoing treatment with abiraterone for mCRPC for six months prior to his presentation. He had atrial fibrillation with a prolonged QTc and developed multiple refractory episodes of TdP, which deteriorated to ventricular fibrillation. His hypokalemia was refractory to treatment… The cardiovascular adverse events with abiraterone can potentially be explained by the hypermineralocorticoid effect of abiraterone…" ncbi.nlm.nih.gov/pmc/articl...
Maybe you can switch to another inhibitor. I see that the ARANOTE trial just completed, and may lead to Nubeqa (darolutamide) being OK'd in doublet with ADT. I think Nubeqa has less SEs than Xtandi or Erleada, and is at least as effective.
I chose Orgovyx over Lupron because of its lower cardio risk and having had a prior cardio history. Heart disease has been well controlled for many years. After starting the ADT therapy quickly developed a branch block and doubled triglyceride levels along with other lipid changes, chest pains, persistent cough. My research found study that 65% of deaths that occur during ADT therapy are attributed to Cardiac problems with or without a prior history. My cardiologist thought it was a good idea so added a Cardio Oncologist to my team. Shortened my ADT goal from 24 to 18 months.
My experience with Orgovyx has also been unpleasant. Beside the fatigue and hot flashes, I have experienced stiff/painful joints at night in all my fingers starting 5 months into a 6-month therapy as part of salvage radiation. I didn't have any issues with joint pain prior whatsoever. Now 5 months past completion of Orgovyx, symptoms persist, and tests indicate onset of rheumatoid arthritis.
More or less the same issues you're having. Seeing my old and steady Cardiologist, and a new Pulmonologist (Found some spots on my lungs and I also had a Barium drink test). Being followed up.
It's hard to attribute side effects to any particular therapy, although some of the speculations above may be worthwhile.
May I suggest a possible elephant in the room? Which is low to zero estrogen.
Low estrogen is a risk and causal for osteoporosis, hot flashes, and cardiovascular issues. And maybe even contributes to fatigue and brain fog.
And estrogen of course is a casualty of our therapies. We know ADT (both the agonist and antagonist GnRH varieties), separately an ARPI (Abiraterone, but not an AR antagonist such as Darolutamide (Nubeqa), contribute to zero estrogen. Because estrogen is mostly made from testosterone. No testosterone, no estrogen. I can't remember my doctors highlighting the implications.
When you think about it, men and women both need a little or a lot of both estrogen and testosterone, as appropriate for their sex. And for a man to function without these two main hormones is kind of crazy. Damages from cancer aside, so much of the challenge of living with metastatic prostate cancer is our lack of both of these hormones. (And I'm not only referring to intimate relations here, which is just one of many important hormonally regulated functions in the body.)
We have discussed from time to time on this forum, the idea of low-dose transdermal estradiol add-back. This would be supplementary to ADT and ARPI doublet therapy.
I keep thinking, motivated especially by fatigue, that I should more boldly investigate estradiol add-back. But I haven't taken it any further yet
Here's my summary: the debilitating effects of therapies against metastatic prostate cancer can have many side effects, some direct and some indirect, and often idiosyncratic for each person. That we end up with zero testosterone and zero estrogen at the same time is a double whammy. We hope for zero testosterone - but not zero estrogen. And oddly this is not talked about so much - the closest one gets to it is a prescription for possibly risky bone strengthening drugs like denusomab.
There is research that low-dose estrogen add-back might be a good idea. Instead of blaming our drug therapies for what in fact are downstream side effects of low hormones, consider addressing low estrogen directly.
Maybe a "holistic" 🙄 review of how the body works could be worthwhile. Maybe we can stay on therapy but manage our body systems better.
My Oncologist mentioned that - that it might be because of ultra low testosterone. But didn’t suggest any alternative therapies. But I think this has hit me harder after starting Abiraterone (since mid-May) than Orgovyx alone did (started mid December). I’m 2 days into this vacation and just want to stop this hacking cough.
I thought about you the other day when news of Whooping cough being more prevalent at the moment came out and wondered if you have seen just a regular family physician just to rule some things out. Or in I guess too.
Yeah, I did, but he kinda referred to my oncologist. My PCP prescribed some cough medicine, which didn’t help. It feels like bronchitis. Maybe it is, but man… it’s sticking around.
are you getting Xgeva infusions? I had similar symptoms as you and had to go off Xgeva. I am restarting again and getting shots every three months instead of every month.
I guess I’m asking if y’all have gone through anything similar, and had any advice/suggestions for me.
I've been through something similar. I won't give medical advice, but I can tell you about my experience.
I experienced shortness of breath while on abiraterone. I believe it was due to the mild to moderate anemia that invariably followed low testosterone for prolonged periods. Shortly after I stopped abiraterone, my red blood cell numbers would improve and the shortness of breath resolved.
I have to wonder about the 5 weeks, while continuing Orgovyx. IF your problems are related to low T, stopping just abiraterone is unlikely to help.
Why 5 weeks? In my experience it takes a week or two for T levels to recover, but of course that won't happen while taking Orgovyx. Once serum T rises it takes another month or so for the red blood cells to catch up, and desire (of all kinds) to return.
Orgovyx affects the pituitary, which in turn shuts down the testes, while abiraterone has a more local and extensive effect on the synthesis of T in any cell, including the adrenal glands and in cancer cells. I never tried Orgovyx, but Lupron was hellish, with multiple Grade 3 toxicities, including multiple mental effects. I strongly suspect that these drugs affecting the brain and endocrine systems are not nearly as narrowly targeted as their sales literature suggests.
So I switched to abiraterone plus dexamethasone. Nothing else. My T would plummet to single digits in a week, and would typically read 1 or 2 after that. The experience was completely different. Complete lack of all desire due to the low T, and shortness of breath during weight lifting due to the anemia. But none of the Grade 3 side effects.
I never could understand why abiraterone was always combined with Lupron, Orgovyx, or something similar, when abiraterone alone was so effective in lowering T. None of my oncologists could answer that question, other than to say that was how it was always done.
Eventually on abiraterone I would start to develop very specific morning headaches. That was my signal to stop abiraterone and let my body have some T. Once stopped, I would monitor PSA closely, and resume abiraterone when PSA rose to pre-treatment levels.
That was 7 years ago. I've been through 8 cycles of abiraterone + 0.5 mg daily dexamethasone. Each cycle lasted from 250 to 450 days. The difference in quality of life was enormous.
Why dexamethasone? My question is why is prednisone still so universally used?
Dexamethasone use in metastatic castration-resistant prostate cancer patients treated with abiraterone acetate: this “cort” is not out of order!
doi: 10.4103/aja202155
That's a short commentary, but references several relevant studies. The primary motivation for dexamethasone:
Dexamethasone was associated with a higher PSA response rate (88% vs 60%–78%) and longer radiographic progression-free survival (26.6 months vs 12.8–18.5 months)...
That's a huge difference in PFS, and after discussing the matter with my oncologist, we switched to dexamethasone. While there are risks associated with all steroids, most certainly including prednisone, I haven't experienced anything I can attribute to the dexamethasone.
Just my experience, no advice implied. We're all different, naturally we will make different choices. Good luck to you.
Just to answer “why 5 weeks?” That’s the time before my next blood test and next Oncologist appointment. In between, I’m getting a cardiac 3D imaging test. So arbitrary period of time based on my appointments.
Thanks for the other info. I’ll go through it shortly, but it’s nap time.
My cough stopped after 1 1/2 months. 3D imaging found nothing. No explanation for wonky ECG.
But my pulmonologist (apparently I have one of them, now) was concerned about several small nodules in my lungs, and wants me to follow-up in 6 months.
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