BONE DENSITY TEST IS BAD : I am 68 with... - Advanced Prostate...

Advanced Prostate Cancer

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BONE DENSITY TEST IS BAD

JL1955 profile image
14 Replies

I am 68 with low volume metastatic to hip bones. Nothing elsewhere, at this time.

Had PSA of 125 last April, and oncologist put me on Relogolix and Darolutemide. That along with going to plant based diet and adding weights and HITT exercise 3-4x per week, has brought me down to < .006.

that’s the good news . The bad is that my testosterone is down to 1, and I’m at risk of broken bones. Just had density text one score is -1.2, another is -2.5, and another-1.8.

I see my oncologist next week, and think I need a ADT “ vacation “, as I’m also having a lot of brain fog.

hopefully, I can go off for X months, and if PSA starts rising, go back on, but my QOL feels a t risk from brain fog and possibility of bone breaks, such that I will need to dial back my HITT and weight room, which are so good for my mental and physical well being.

anyone else, been at this cross road?

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JL1955 profile image
JL1955
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JL1955 profile image
JL1955

p.s. I’ve declined surgery, chemo and radiation and been able to get down to .006. My oncologist called me an “exceptional responder “

JohnInTheMiddle profile image
JohnInTheMiddle

Bravo JL! Especially the exercise!!! Allow some quick comments because time is short: you've done well. Especially the amazing amount of exercise!!! (I've done a lot of research on exercise, not just for QOL, but as powerful anti-cancer. And I'm exercising!) But, as for giving up on ADT, April is not so long ago!

You also decided not to get chemo (which might make your therapy"Triplet Therapy"). I did get the chemo. Chemo is not so bad (esp. if you fast one day prior and two days after -- no retriction on fluids of course.)

And as for surgery and radiation -- I also didn't have those either -- because it was too late! Just Triplet (chemo, ARPI, ADT). Thank G-d for small mercies.

But ADT and from the perspective of a holiday??? Really??? Lots of implications and I won't argue the point.

Now as for bone risk -- here is a post and a reply and a study on the topic of "estradiol add-back". Worth considering. Pay attention to the difference between high-dose Estradiol-as-ADT-replacement and low-dose transdermal Estradiol-As-Estrogen-Add-Back. They are very different. (The famous "PATCH" trial to my understanding is only focused on ADT replacement. However see below -- there is apparently a subset of the trial that is looking at add-back.)

healthunlocked.com/advanced...

healthunlocked.com/advanced...

erc.bioscientifica.com/view...

There are quite a few other posts and replies here and there on our wonderful Forum on the topic of "Estradiol Add-Back" -- except they are hard to find without a lot of labor-intensive fiddling -- our "search" isn't so great -- you can try an external search via Google.

JL1955 profile image
JL1955 in reply toJohnInTheMiddle

Thanks. Good info. You are certainly an Extraordinary Responder, too, coming down from 1700 to .01. I’m at Farber in Boston, and they said no need for chemo when PSA comes down so rapidly. I didn’t argue.

Regarding exercise, I swim at whatever constitutes sprinting, for a 68 year old, and really get my blood pumping. While resting between each sprint lap, I do “bounding” as if on a trampoline. Moves the lymph.

Move the blood. Move the lymph. Therin may be something big to wake up immune system

JohnInTheMiddle profile image
JohnInTheMiddle in reply toJL1955

And "bounding" creates microshocks that drives bone remodeling in favor of strengthening! As for "moving the blood" - more goodness - there is some evidence that prostate cancer cells traveling in the blood looking for a new home to colonize can be damaged if blood is flowing quickly during periods of exercise. So then they fail to seed new metastases! Boo-ya!

Allan65 profile image
Allan65 in reply toJohnInTheMiddle

Trampoline time😀😀

CancerConcierge profile image
CancerConcierge

Is your -2.5 score on the DEXA in your hip?

Has your doctor recommended any bone medication (s)?

maley2711 profile image
maley2711

I am surprised that your Docs have not discussed bone "strengtheners" with you? Double whammy of both metastasis and osteoporotic BMD !!! Wrist, spine, and hip most frequent fractures. But, strengtheners not without risk...of course !! So impressed by your exercise discipline!!!

Irun profile image
Irun

you are still in the bounds of osteopenia not osteoporosis which is good . Usually (in the UK) they would put you on zolondronic acid infusions and calcium supplements .

Nusch profile image
Nusch

Before stopping ADT or taking osteoporosis medication, what’s your weight? Very often DEXA is wrong with light-weighted people with thin bones. Are you in this group? Then get a REMS test to double check.

JL1955 profile image
JL1955 in reply toNusch

My weight is 175 and height is 5’11”

JL1955 profile image
JL1955

my weight is 175. I was probably 190 back in April, before going plant based.

I did break my right femur last April from tripping on stairs, which is when doctors biopsied the break and found my PSA was 125

85745 profile image
85745 in reply toJL1955

I have heard many cancer success stories with folks on plant based diets, many claims on cancer being a metabolic disease . Proper diet, nutrition and exercise. Can't hurt In my opinion. Good amt of sleep , low stress , relaxation . All good .

Nusch profile image
Nusch in reply toJL1955

When you already break a bone DEXA is probably right.

tsim profile image
tsim

Those aren't terrible, but you are in the osteopenia range. The light weight stuff is good, make sure your calcium levels are up there. There are some bone strengthening drugs but they're not great. If it worsens you could discuss with your physician.

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