What now?

Posted by oldfords @oldfords, Sep 21 10:50am

I am 77 years old and here we are so far.
On 6/13/2023 PSA of 5.4. Biopsy and whole body scan were negative.
On 4/1/2024 PSA 400 and pet can showed widespread osteoblastic skeletal metastatic disease.
On 4/11/2024 started Lupron injections.
On 4/19/2024 started six rounds of chemo (Docetaxel) on three week intervals, and Nebeqa, two tablets morning and night.
On 9/2/2024 one month after finishing chemo and PSA is 1.26. Also a new Pet scan and it shows almost no change in anything.
I have somewhat learned to live with and control my fatigue so I am able to do what I want just slower. Other than that, I don’t have any adverse side effects. I really don’t have any pain and do not need any pain pills. I don’t know where I go from here, but will meet with the cancer dr. again in two weeks and see what they have to say. Maybe this is as good as I will ever get and if it is I guess I will live with that.
I know that there is someone in charge of everything, and I will trust in Him to keep me.

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

A common next step is Pluvicto. With some patients, it can greatly reduce the amount of metastasis in their body.

Before doing Pluvicto you should have both heredity genetic testing and somatic test of your tissue or blood to see if you have any genetic anomalies. People with BRCA2 have better success with Pluvicto. Those with RB1 or PTEN Genetic issues have poor results with Pluvicto.

If most metastasis are to the bone radium 223 has been effective in reducing metastasis.

Ask your doctor about these two options

Exercise has been a good way to reduce the fatigue you get from the drugs you’re on. Walking and weight exercises both help.

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Go out and get some mushrooms. Eat them daily. Various types help keep that PSA down. I m even eating mushroom powder daily in my hot tea.- white button mushrooms. Just a suggestion . My psa is < .01 with stage 4 PCa. Look it up on Google and see what I mean.

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This is not a here we are now comment but I was curious. Jun last year your PSA was 5.4. I assume that was elevated and you had further testing with negative results. Then April of this year PSA 400. Was that the plan? Seems a long time to go without another PSA.

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Interesting situation and good outlook on having faith on the light leading forward. I tend to agree that the PSA from June 2023 to April 2024 was a huge increase, however you and your health team embarked on a triplet therapy and your current PSA of 1.26 is definitely a sign of success, however it is remarkable that that your most recent PSMA PET shows the same areas of uptake as your PSMA PET from April 2024. I have heard of cases where PSMA is 85-90% effective on identifying prostate cancer, however your situation is different. I would want to make sure that the most recent PSMA PET results are analyzed again, and at the same time I would suggest to embark on PSA tests every month (your PCP can place this order). Hypothetically, if your PSA remains low and does not increase, I'd almost discount the PSMA PET results, but that line of logic is something to review with your health team on a slow and intentional conversation.

Are you still on Lupron and Nebeqa? If so, is the health team suggesting to stay on it? You sound like you are still in the MHSPC phase of the cancer, so sticking with those treatments would be a good step and then exploring MHRPC drugs when/if their efficacy fades.

Keep active and overcoming the fatigue and brain fog

thank you for sharing and asking

dave

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@edmond1971

Interesting situation and good outlook on having faith on the light leading forward. I tend to agree that the PSA from June 2023 to April 2024 was a huge increase, however you and your health team embarked on a triplet therapy and your current PSA of 1.26 is definitely a sign of success, however it is remarkable that that your most recent PSMA PET shows the same areas of uptake as your PSMA PET from April 2024. I have heard of cases where PSMA is 85-90% effective on identifying prostate cancer, however your situation is different. I would want to make sure that the most recent PSMA PET results are analyzed again, and at the same time I would suggest to embark on PSA tests every month (your PCP can place this order). Hypothetically, if your PSA remains low and does not increase, I'd almost discount the PSMA PET results, but that line of logic is something to review with your health team on a slow and intentional conversation.

Are you still on Lupron and Nebeqa? If so, is the health team suggesting to stay on it? You sound like you are still in the MHSPC phase of the cancer, so sticking with those treatments would be a good step and then exploring MHRPC drugs when/if their efficacy fades.

Keep active and overcoming the fatigue and brain fog

thank you for sharing and asking

dave

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Thanks for your response and comments. Yes, I am still on Nebeqa and Lupron. I am scheduled to remain on these, although there was discussion about going to 6 month Lupron shops instead of 3 months which I am doing now. This discussion was before my latest PET scan, so maybe the dr will recommend staying at 3 months. I will start getting a PSA test every month as you suggest and monitor it closely.

thanks again Al

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@tuckerp

This is not a here we are now comment but I was curious. Jun last year your PSA was 5.4. I assume that was elevated and you had further testing with negative results. Then April of this year PSA 400. Was that the plan? Seems a long time to go without another PSA.

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I guess that was the plan. I think I had an idiot for an urologists'. He said we should take a wait and see attitude and me knowing nothing, believed him. He has since been terminated form the clinic. A little late for me but I need to find a way forward from here.

Thanks for your reply al

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@oldfords

Thanks for your response and comments. Yes, I am still on Nebeqa and Lupron. I am scheduled to remain on these, although there was discussion about going to 6 month Lupron shops instead of 3 months which I am doing now. This discussion was before my latest PET scan, so maybe the dr will recommend staying at 3 months. I will start getting a PSA test every month as you suggest and monitor it closely.

thanks again Al

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You don’t mention your Gleason score. That is a major factor in deciding how long you take ADT. Gleason eight usually means 18 months of ADT. Gleason Nine or 10 24 months ADT.

I had six month shots for about six years, much more convenient than coming back for a shot every three months.

Have they discussed doing a prostatectomy or radiation to stop your prostate from continuing to feed your cancer spread? This is become much more common in the last couple of years. Ask your doctor about it.

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OK I will ask about prostatectomy or radiation . I also don't know my Gleason score. I have never been told about it.

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@oldfords

OK I will ask about prostatectomy or radiation . I also don't know my Gleason score. I have never been told about it.

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OMG - he WAS an IDIOT!!!! And to get fired he must have hurt a lot of people sling the way

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