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Stage 4 Metastatic - what to expect after 6 months

Posted by prbutler @prbutler, May 7 8:07pm

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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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kitlund | @kitlund | Jul 5 5:31pm
In reply to @jeffmarc "@kitlund Orgovyx can be pretty hard on someone 80+. Due to your BPH, I wonder if..." + (show)
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@kitlund
Orgovyx can be pretty hard on someone 80+. Due to your BPH, I wonder if your prostate is over around 75 cc. During one of the monthly meetings the Mayo radiation oncologist said that he didn’t like to radiate a prostate over 75 cc. Hopefully Orgovyx can bring it down So they can do radiation. Maybe the HoLEP can reduced it enough.

Once you’ve had radiation getting off Orgovyx Would be a good idea since it can cause a lot of side effects and fatigue can be difficult for many people. I know and a lot of guys in their 80s that are on Nubeqa alone. It works really well to keep the PSA down and prevents the testosterone from helping the cancer grow. Something to discuss with your doctor.

I was having a problem getting up too many times at night, I’d wake up and feel like I had to go and I knew damn well I didn’t. I’m now taking Myrbetriq And I usually don’t get up at all at night anymore. I’ll be laying in bed reading after I wake up and maybe wait a half hour or 45 minutes before I get up go pee. No urgency any more. Gemtesa is supposed to work similarly. My urologist was real helpful when I asked about getting one of the drugs.

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@jeffmarc many thanks for those comments and suggestions!

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