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Metastatic prostate cancer request for advice

Posted by talebn @talebn, 1 day ago

I am 72 years old diagnosed with metastatic prostate cancer in January 26
- Gleason Score 4+3=7
- PSA 13
My PSMA-PET scan revealed the following:
- There are multiple radiotracer-avid lymph nodes in the common, external and internal iliac regions, as well as in the retroperitoneal region, metastatic. For example:
Left periaortic lymph node measures 1 x 1 cm with SUVmax 9.1
Right external iliac lymph node measures 1.1 × 0.9 cm with SUVmax 9.3

- There are few radiotracer-avid bone lesions, metastatic. For example:
C6 vertebral body with SUVmax 5.4
Anterior arch of the right 3rd rib with SUVmax 10

I am relatively active, no smoking, no drinking, no chronic illness, exercise one hour daily yoga and moderate power training and eat healthy meals.
My Urologist have prescribed casodex and then zoladex after 3 weeks while my oncologist suggested to replace casodex with Zytiga. My urologist still insists to complete 3 months on casodex and then decide.
Now I am 45 days on casodex and 25 days on zoladex. I am not having any serious symptoms except little brain fog, even my overnight frequent urination has significantly improved.
1. Am I on the right track?
2. Any suggestions?
3. Should I stay on casodex or change to zytiga or xtandi?
4. Can any one explain PSMA-PET scan?
5. What is the survival expectancy for my case?

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jeff Marchi | @jeffmarc | 1 day ago

It is a little unusual to be given Zoladex in the United States. Are you outside the USA? That is what is causing your brain fog.

The PSMA PET scan has shown that you have metastasis in different spots. While being on the drugs can make them smaller it’s unlikely to eliminate them and they will usually come back if you stop the drugs. There are more than one treatments for bone and lymph node mets. They can be zapped with SBRT radiation if they are not close to organs that could be damaged. You could also get Pluvicto Or chemo if there are many of them. An SUV of 9 or 10 is implies there is cancer in the lymph nodes and bone. The 5.4 on the spine is elevated but not necessarily cancer.

While your Gleason score is not real aggressive, when they do a biopsy, they only biopsy one percent of the prostate. It’s very possible that there is a higher Gleason score in your prostate itself that could only be found out by doing more biopsies or surgery to remove it.

Zytiga Works great for some people I found it caused me a lot of trouble, Many hot flashes, Gave me high blood pressure and Multiple afib events. Xtandi (Enzalutamide) Is easier to deal with and newer studies have shown it is preferable to go with a lutamide over Zytiga. I started with Darolutamide (Nubeqa) Because I know many people that are on it and have said that it has very few side effects. Xtandi Does cause fatigue for some people, Very few report that with Nubeqa. If you are not in the USA, it is hard harder to get Nubeqa In some countries. Casodex is a lutamide, Biclutamide, but it is not nearly as effective as xtandi or nubeqa. Nubeqa Is not supposed to pass the blood brain, barrier and cause additional brain fog.

You have to realize that most people, even those with advanced prostate cancer, have no symptoms at all.

Prostate cancer is a chronic disease for most people not a deadly disease. Only about 10% of people that get it die of it, most die of something else.

REPLY
1 reply
Profile picture for talebn
talebn | @talebn | 1 day ago
In reply to @jeffmarc "It is a little unusual to be given Zoladex in the United States. Are you outside..." + (show)
Profile picture for jeff Marchi @jeffmarc

It is a little unusual to be given Zoladex in the United States. Are you outside the USA? That is what is causing your brain fog.

The PSMA PET scan has shown that you have metastasis in different spots. While being on the drugs can make them smaller it’s unlikely to eliminate them and they will usually come back if you stop the drugs. There are more than one treatments for bone and lymph node mets. They can be zapped with SBRT radiation if they are not close to organs that could be damaged. You could also get Pluvicto Or chemo if there are many of them. An SUV of 9 or 10 is implies there is cancer in the lymph nodes and bone. The 5.4 on the spine is elevated but not necessarily cancer.

While your Gleason score is not real aggressive, when they do a biopsy, they only biopsy one percent of the prostate. It’s very possible that there is a higher Gleason score in your prostate itself that could only be found out by doing more biopsies or surgery to remove it.

Zytiga Works great for some people I found it caused me a lot of trouble, Many hot flashes, Gave me high blood pressure and Multiple afib events. Xtandi (Enzalutamide) Is easier to deal with and newer studies have shown it is preferable to go with a lutamide over Zytiga. I started with Darolutamide (Nubeqa) Because I know many people that are on it and have said that it has very few side effects. Xtandi Does cause fatigue for some people, Very few report that with Nubeqa. If you are not in the USA, it is hard harder to get Nubeqa In some countries. Casodex is a lutamide, Biclutamide, but it is not nearly as effective as xtandi or nubeqa. Nubeqa Is not supposed to pass the blood brain, barrier and cause additional brain fog.

You have to realize that most people, even those with advanced prostate cancer, have no symptoms at all.

Prostate cancer is a chronic disease for most people not a deadly disease. Only about 10% of people that get it die of it, most die of something else.

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@jeffmarc
Many thanks for your comprehensive reply, it is really helpful.
Yes, I am not in USA. I live in Lebanon. Nubeqa is not available while xtandi and zytiga are. I will continue with casodex until my next injection and then probably will go for xtandi.

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