Just an update

[85236442968]

Hey Warriors

Just a quick update note. Feel free to comment if desired, however no responses are required or expected.

It has been a year since diagnosis via Biopsy.

GG3 (Gleason 4 +3) cT3aN1M1a. PET Scan showed in addition to PSMA uptake on Prostate gland, PSMA uptake on Pelvis/Iliac Lymph Nodes and 3 Periaortic lymph nodes.

Immediate Lupron shot and Start Abiraterone and Prednisone.

28 rounds of IMRT + 3 SBRT on Periaortic nodes. Finished radiation 9 months ago.

PSA has moved to 0.04 (first 0.04 result was in Feb of 2024) subsequent PSA result have all been at 0.04.

Follow-up PET scan 2 months after radiation showed no Uptake in Prostate or near Prostate, , No uptake in Periaortic nodes, and no uptake in pelvis nodes except one that was 2.5 SUV. It had been 16.9SUV in initial. We have surmised there is no Uptake now

Abiraterone/Prednisone caused terrible blood pressure issues. some days as high as 190/75. Abiraterone dosage was reduced to 750 mg daily along with 5 mg Prednisone. This helped somewhat, but ended up embarking on a Blood pressure journey that included multiple med changes and the eventual changing to a cardiologist who cared. I will take the time to comment on this as the Cardiologist I was going to and had been using for some time, seemed oblivious to the simple fact that the blood pressure changed when I started taking Abiraterone. I was recording BP daily. I showed the Cardiologist a months worth of data that showed the BP ranged from 172/70 down to 163/60 and never went below that. The Cardiologist said OK, see you in 3 months. I said WTF. Immediately went to the Cancer Center and asked "Who is the Cardiologist that helps the Cancer patients". I was told and got a quick referral and appointment. Meds were changed (had to do some withdrawal on one of them) and currently have a daily BP avg of 118/58. Pulse 64. Many thanks to the new Cardiologist. and it is obvious that he cares.

My lesson here (that I had to relearn as I went thru something similar before) is you have to be your own advocate, if the Dr of whatever type does not have the time to give you the care you need or is incapable of providing it for whatever reason, IT IS TIME TO MOVE ON. Keep in mind you pay them for the help they provide, and if it is poor or in some cases worthless, spend your money elsewhere and wisely.

Anyway back to update. Had my checkup today. All blood work is good, Side effects are tolerable, however the Oncologist and I discussed and I plan on a trial of taking the Abiraterone at 10:00 pm so see if it help with SEs. Also got a shot of Eligard instead of Lupron. I asked why and was told they are similar except different delivery method. Said Ok.

In closing diet is better than a year ago, I walk daily for 30 minutes in neighborhood, rain or shine. 3 days a week at local Y for weights. I have got my originally lost muscle mass back, and have put on a little more. Have not had a glass of beer or wine in a year. Feel good most of the time (except 2-3 hours after taking Abiraterone).

Many thanks to the Timken Cancer Center for their help on this journey as we may just win. If we do not win, it will be a long time until we lose.

Sorry for the length, and best wishes to all on your journeys.

[Orange95]

Great update.

[Mascouche]

I am hoping that your taking your Abiraterone at 10h00pm will hopefully help you with the side-effects you are feel. Just want to give you a little piece of advice so that your sleep does not get impacted by this change in schedule. Keep taking your prednisone in the morning, even if you take your Abiraterone at 10h00pm, as you might get jittery at nigh similar to if you drank too much coffee.

I had initially been prescribed 10mg of prednisone per day, with 5mg in the morning and 5mg at dinner. This was causing me sleep issues. When I brought this up to my MO, he said that there was no harm in me taking it all at once in the morning. That made my sleep much better.

Hope this helps!

[85236442968 in reply to Mascouche]

Mascouche

Thanks for the response.

Also thanks for the tip.

[Tall_Allen]

Instead of decreasing the abiraterone dose, you might try increasing the prednisone dose slightly.

[85236442968 in reply to Tall_Allen]

Tall_Allen

Thanks for the response.

I have been on the 750 Abiraterone and 5 mg Prednisone for about 7 months now.

I have discussed increased Prednisone multiple times with him and her (Both MOs) reluctant to do it.

The reduction from 1000 to 750 mg of Abiraterone was to help with Blood Pressure. With that completely under control now, we did have the discussion of increasing to 1000Mg. I brought it up. The MO told me based on current performance, she did not see a benefit from increasing.

[Maxone73]

Fight on bro! Great results!

[Nwdx]

Congratulations, great you are happy with your progress. You don't mention here or bio the original PSA number as your starting point IE: "Through the roof", just curious. I was diagnosed with a lesion nearly a year ago, and on a completely different path. Thanks!

[85236442968 in reply to Nwdx]

Nwdx

Thanks for the response.

In May of 2023 I was 7.82. I was already concerned about it but the PA Urologist I was going to kept going back to my Free PSA being around 40%.

In August of 2023, I was 9.68, still had the high Free PSA at about 40%

I had to tell them I wanted some imaging done. They were still hesitant but told me They would authorize a Multiparametric MRI, following that things started happening rapid fire.

I did get a sort of apology from the Urologist, but not the PA.

Apology does not do much when you are told you have had Prostate cancer for some time, and now it is in your Lymph nodes.

[Nwdx in reply to 85236442968]

Apologies don't mean much really, I hear ya. My free PSA is 10-13% over past 10 months. Misdiagnosed most of my life for other things and lots of stress over it or causing my issues, lots of bad luck with Doctors. Thanks also to the entire "sick care industry" insurance pressuring them to cut time spent, costs, shortcuts, overworked, etc. I have no symptoms and way over your PSA. Feel fine, no biopsy, treatments, etc. just living life until it's over. Thanks for answering.