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Stage 4 Metastatic - what to expect after 6 months?
In November I was diagnosed with metastatic prostate cancer. I had a PSA of 5000, Gleason score of 9, and the cancer had spread to lymph nodes, many bones, and I had small spot on my lungs.
We are approaching 6 months since the diagnosis. I did triple therapy of chemo (Docetaxel), Nubeqa, Firmagon. I've finished 18 weeks of the chemo and have transitioned to Eligard (along with continued Nubeqa). My PSA at last check was 2.2 and PET scans showed no new tumor growth and significant tumor shrinkage.
I will start 28 rounds of radiation on my prostate next week.
I'm 55, have continued to exercise daily, and have changed my diet quite a bit. I'm struggling mainly with fatigue, hot flashes, and some leg swelling.
I'd love to connect with anyone with a similar diagnosis.
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@beaquilter OHHH - My Bad!! So glad you are taking care of yourself; the old rule of putting on your oxygen mask FIRST, still applies!
Orgovyx definitely messed up my sleep and compounded the exhaustion from the low T. Your husband is on even more ADT so sleep must be awful.
All I can offer is naps, however many are necessary; if he can’t nod off in bed, let him stay in the den with a book or the TV until he does.
Unusual circumstances (like stage 4 PCa) call for unusual solutions; he has to catch some Z’s wherever he can and not rely on an uninterrupted sleep in your bed.
A lot of members have gone thru this and probably have suggestions - ie herbal remedies or teas, etc., but all that ADT is hard to overcome. Best,
Phil
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1 ReactionMy path was similar to yours. Now age 76. Gleason 9’s. High PSA. Metastatic. Stage 4b. Diagnosed in August 2022. Did triplet treatment, same as you but my ADT was Lupron. Continued Lupron and Nubeqa for 13 months then dropped Lupron and continued Nubeqa, which I still take. Scans and blood work every three months. PSA consistently negligible. Side effects of fatigue throughout; weight-gain and gynecomastia. Try to stay active but hard to stay motivated.
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2 Reactions@mmacaulay
Have you had your testosterone level checked? It sounds like it didn’t return to a normal level, considered above 280. You could have TRT (Testosterone replacement therapy) To get your testosterone back to normal levels. Because of your aggressive cancer, it may not be the best idea, but it may not make any difference since you are on Nubeqa And it suppresses the cancers ability to use testosterone.
There is recent documentation that shows it does not cause the cancer to come back.
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1 ReactionMy T is at 520 ng/dL. Rebounded quickly after I quit ADT. I assume the ARI blocks its utilization. So where does the T go? I’ve read that T is enzymatically converted to estrogen (estradiol in males) by aromotase. In I’m wondering if excessive estradiol causes fatigue and gynecomastia. So T therapy would seemingly fuel the fire.
@mmacaulay
You have really brought up an Interesting problem. You are 100% accurate about Nubeqa Causing you to still have fatigue, even though your testosterone has returned to normal. Nubeqa does block testosterone enough to leave people with some of the same symptoms they had while on ADT.
A search of the Internet finds AI discussing this issue and actually points to this particular discussion, in this forum, about that exact subject in 2024.
https://connect.mayoclinic.org/discussion/darolutamide-impact-on-testosterone-utilization/
It is really interesting that AI uses what we say on the Mayo Clinic as information for questions that are asked. What is unusual is that there are no Mayo Clinic professionals involved in answering questions here, Yet they refer to this forum for answers. This is the second time I have seen them quote this forum on theMayo Clinic
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1 ReactionI too have metastatic prostate cancer that spread to the lungs. After being in remission for 5 years after initial treatment (which was ABT, 28 sessions of radiation, and radiation seed implants), one of my CT scans showed that some lung nodules were growing. so we did a PET scan and my lungs lit up like a Vegas sign.
They did a lung biopsy and sure enough, the nodules were cancerous and they removed part of my left lung in order to remove the biggest nodules. I was then put back on ABT (Lupron), with the addition of Abiraterone and prednisone.
So far, this has stopped the growth of the remaining lung nodules for about a year now (I get CT scans every three months). My oncologist is hoping to get two years before the cancer develops a resistance to the drugs. I'm on the maximum dosage of abiraterone (1,000 mg daily) and so far have had very little side effects. My gleason score unfortunately is a 9, so as you can imagine I'm just a little nervous every 3 months before the CT scans.
Hang in there. There is a massive amount of research going on for prostate cancer and we may both be pleasantly surprised with a new breakthrough.
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5 Reactions@mmacaulay
Dr. Eugene Kwon is a urologist. In your condition, you should be seeing a GU oncologist.
Dr. Heath at Mayo Is one of the top oncologist in the country. You should try to get an appointment with her.
If you are on an ARPI drug, it can cause the symptoms you are describing.
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1 ReactionDoes Nebequa shrink metastatic prostate e Tumors
I have never used Nebuqua
@michaeldigiuro well Nubeqa blocks androgen receptors which will impede tumor( cancer growth). So in a way you could say it HELPS shrink the tumors. However, radiation is what actually shrinks tumors quickly. This is a very simplistic explanation..you can Google and research this topic for hours if you are really curious.