Next Steps

[Sparlingo]

My brother was dDiagnosed in March 2023 with widespread prostate cancer metastasized to the spine, pelvic bones, ribs both left and right, and skull and lymph nodes. No progression to any organs.

He had a orchiectomy, is on ABIRATERONE 500MG and has just completed six treatments of Doxetaxel .

Had a bad spell with phenomena in December which weakened him. In January he had another spell related to morphine. He was in a nightmarish state and threw the morphine away and was suffering bad Diarrhea. Diagnosed with sudden severe withdrawal from morphine and dehydration and lack of electrodes.

In February 2024 they did a follow up Scan. No progression, some shrinkage, some has disappeared. Psa steadily went down each month from a start of 367.8 and is now .74 although there was one month that it went from .84 to 1.32. Last PSA test was February 5th, 2024. ALP starting was 190 in Feb 2023, went to a high of 298 in June and has now settled steady at around 90 as of February 2024.

His next appointment is in April 2024, he needs some time to build back up his strength. He suffers pain, particularly in the pelvis and he suffers hot flashes.

My question is what should he do next? Should he ask for radiation to painful areas, an estrogen patch and are there any other medical treatments anyone recommends? He is exercising and eating healthy, it's his next medical treatments I'm wondering about.

[Tall_Allen]

Why is he taking only half the approved dose of abiraterone? Liver problems?

[Sparlingo in reply to Tall_Allen]

My mistake, I copied and pasted, he takes 2 a day of 500 = 1,000. Geeze you are sharp. Any other advise?

[Tall_Allen in reply to Sparlingo]

He is getting a great response from what he is doing.

[Lslal in reply to Tall_Allen]

I agree. I started with a PSA of 935 and last week was my 2 year anniversary on this voyage. My current PSA is <0.01. Keep up the fight.

[Sparlingo]

Thanks, that is great to hear, especially coming from you.

[CAMPSOUPS]

A positive response is the most important thing we hope for when starting any treatment. Your dad is as TA said getting a great response.

There are more treatments for the future but his MO will best determine what the best next treatment will be when the time comes.

Side note: a year after my 6 docetaxel infusions I progressed and started Zytiga. Zytiga was of benefit for almost 14 months. Little to no side effects on Zytiga and I wish I would have tried to enjoy life more during my time on it. Those 14 months were probably the best I had during my 4+ years since diagnosis.

[JohnInTheMiddle]

It's notable that your brother has had an orchiectomy, in Canada and at this time. My understanding is that orchiectomy is quite rare now, compared to decades ago. The commentary on this topic is that orchiectomy can be very effective and that it's a tragedy that is not used more often.

[Sparlingo in reply to JohnInTheMiddle]

Hi John. My brother opted for it due to less side effects. The doctor mentioned it is still opted for here in the Maritimes more than other places because of rural distances to hospitals as it simplifies overall treatment. In some places it is hard to find surgeons who are familiar with the procedure. I'd note the it was not suggested by the doctor, but readily accepted by the doctor when my brother asked for it. He asked for it because I did my research on this thread and told him it could be an option. Another lesson in doing your own research.

[VHRguy in reply to Sparlingo]

Good for you doing the research! Guys are notoriously bad about avoiding medical issues, and many times we've seen a concerned spouse doing the background work.

An orchiectomy is a fairly simple surgery that is obviously effective at stopping testosterone production permanently. It's a deeply psychological thing for guys, just about the biggest taboo we grow up with. My oncologist said they stopped offering them; while unquestionably effective, guys just wouldn't do it!

A low dose estradiol patch (the active part of what's called "estrogen", measured in blood as E2 in pg/mL) can help him feel much, much better. It can greatly offset the hot flashes, fatigue, and loss of bone density that typically follow losing testosterone.

I've been on estradiol, for well over 4 years now, and have felt absolutely terrific with it. My PSA has remained undetectable since my own orchiectomy 5 years ago. Yes, I have some gynecomastia as a result, but I don't care.

[JohnInTheMiddle in reply to VHRguy]

This is so interesting VHR! Can you share the specs for the patch and whether you are regularly monitoring E2 of blood levels? Do you have a target blood level?

[VHRguy in reply to JohnInTheMiddle]

For over 3 years, I used Mylan's estradiol patches. The dose was 0.1mg/day, changed twice weekly. That got me to about 80 pg/mL. Post menopausal women, I read somewhere, aimed for at least 50 pg/mL to protect bone density. That issue was my greatest concern, as I did lose a lot of bone density (almost osteoporosis) during my initial 3 years on Lupron

I've seen recommendations for the very "low dose" patches at 0.025 mg/day, or 0.050 mg/day. Typically they're changed twice weekly. They're small, postage-stamp size, and not much trouble to manage.

With my 0.1mg patch providing about 80 pg/mL, that issue seemed handled, but I still didn't really feel like myself. My doc suggested using two patches, so we did. That got my level up in the 150-200 pg/mL range for quite a while, and I felt GREAT. That's a pretty common female blood level of E2.

I'm no doctor, and only sharing my experience and understanding. The minimal level around 50 pg/mL blood E2 (not the full "estrogen" number, only estradiol) seems protective of bone density, and also can greatly reduce hot flashes and fatigue.

[Sparlingo in reply to VHRguy]

Thanks for this. It gives a good basis to discuss with my brother's doctor.

[j-o-h-n]

So you spar in a Canadian lingo?

Good Luck, Good Health and Good Humor.

j-o-h-n

[skiingfiend in reply to j-o-h-n]

Correction:

So you spar in a Canadian lingo, eh?

[j-o-h-n in reply to skiingfiend]

eh, you're right........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Sparlingo in reply to j-o-h-n]

Sparling is our last name, but my nickname of Sparlingo seems to have caught on. Sparling is Irish, but Sparlingo seems Italian. The two Sparling brothers used to spar a lot whether we be Irish or Italian.

[j-o-h-n]

Thanks for the info - (more info)........... When the two Irish Sparling brothers used to spar in public..... there always seem to be an Irish stranger who would interrupt them and ask "Is this a private fight or could anybody join in?" Humor!!! Tell your brother I wish him well.....No fighting now........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Sparlingo in reply to j-o-h-n]

Love you j-o-h-n. My brother will love that.

[jfoesq]

I once read something on this site about an MO prescribing something (Gabenatin???) to see if it helped with the hot flashes. You may want to look into that.

[Sparlingo in reply to jfoesq]

Thanks