Stay or Go: 3-1/2 years of ADT +Zytiga... - Advanced Prostate...

Advanced Prostate Cancer

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Stay or Go

TommyCarz22 profile image
34 Replies

3-1/2 years of ADT +Zytiga, Prednisone, and Xgeva and I've developed Osteopenia, and near Osteoporosis (-2.3) in femoral neck, (-1.5 spine and hip) and fractured T11 vertebra . My thoughts are that this is directly related to the ADT. My question is, with a psa at 0.21 is an ADT vacation a good idea, or bad idea. To me, being immobilized with brittle bones is NOT Living.....and how long will it take for the cancer to return if I do stop ADT? The side effects are beginning to make the "cure" worse than the cancer. My Oncologist is against it......should I get another opinion or two?

At diag. 629 psa 4+5=9, and 4+4=8 Gleason, more 9 than 8

34 Replies
cesces profile image
cesces

Get some opinions on bipolar androgen therapy.

Tall_Allen profile image
Tall_Allen

Xgeva at 3 month intervals obviously isn't doing the job for you. It should be monthly.

ADT is lowering your bone mineral density (osteoporosis), but another, perhaps greater risk, is fractures and spinal compression at the sites of your bone metastases. Xgeva can prevent those.

Consider estrogen patches.

maley2711 profile image
maley2711 in reply to Tall_Allen

Patches but also continue the SOC ADT??? Or rely on patches to maintain low T?

Seasid profile image
Seasid in reply to maley2711

I would continue with the standard of care ADT and use minimal estrogen patches just to add what was removed because of the low testosterone but otherwise would be naturally there.

I believe somebody said that to use estrogen as a primary ADT is contraindicated if you have BRCA mutations. (I am still learning about this) but that is a concern. Therefore test yourself for the BRCA genetic mutation before starting estrogen patches instead of the ADT.

maley2711 profile image
maley2711 in reply to Seasid

Thanks for the BRCA mention!!

TommyCarz22 profile image
TommyCarz22 in reply to Tall_Allen

Oncologist believes it's an Osteoporotic compression fracture. Does that mean NOT related to mets? I'm at a loss because nobody ever went over my scans and pointed out where mets was taking place. Only stated "Widespread" bony metastasis. The chest CT was explained in much greater detail, describing "innumerable pulmonary masses" , but giving location as well as additional ground glass nodules and opacities . Is there a way, or person to ask to clarify? so I know ?

Tall_Allen profile image
Tall_Allen in reply to TommyCarz22

"Fragility fractures" are caused by depletion of bone mineral density (osteoporosis) that occurs because of ADT and aging. Other fractures are caused by metastases eating bone. Your oncologist can ask the radiologist for his opinion about what caused your fractures.

Seasid profile image
Seasid

Can you consult an endocrinologist?

I had my second bone density scan and they are sending me to the endocrinologist for bone density.

noahware profile image
noahware

Realize, seeking other opinions will yield mostly the same one, because by definition to stray outside SOC is, well, not standard practice. This is true even when SOC gives bad outcomes that some men would prefer to address, by incurring extra risk.

The docs DON'T want more risk, either for you or for them. The goal of their intervention is to slow cancer progression, even if at a cost that lowers QoL beyond the individual's chosen threshold.

I agree with the idea of adding low-dose estrogen (most docs won't) or considering BAT (even FEWER docs like that). But I'd worry that simply stopping ADT would not mean improvement, because T recovery may be slow (or even nonexistent) after that long on ADT.

Seasid profile image
Seasid in reply to noahware

Do you know why they don't like low dose estrogen to improve bone density?

Why would be adding Xgeva better than low dose estrogen patches?

TommyCarz22 profile image
TommyCarz22 in reply to Seasid

$$$

smurtaw profile image
smurtaw in reply to Seasid

For 40 years oral E2 was used for ADT. Oral E2 carries blood clot risks.

Transdermal (patches, creams, gels) were developed and they bypass the liver so have fewer risks.

The UK PATCH trial showed us that patches can be used instead of Lupron for ADT. STAMPEDE is verifying.

Some MOs will add low-dose E2. Many won’t because it is not currently SOC, and some confuse oral estrogen with transdermal.

There are many reasons to add back some E2. We are meant to have it. Zero T is bad enough. No reason to add insult to injury and deprive us of another hormone.

Seasid profile image
Seasid in reply to smurtaw

I totally agree with you about low dose estradiol?or estrogen? patches.

I can still stay with my Degarelix injections.

Good to know the difference between the purpose of the low dose estradiol patches and the patches instead of Lupron.

Thanks for your clear thinking.

I am also an electrical engineer like you and studied biomedical Electronics subjects during my general electronics study.

Did you consult a nephrologist after your GFR dropped?

If you are dehydrated than your kidneys having a hard time working.

Creatine can dehydrate you plus if you cook it it can convert itself into creatinine and if you kidneys don't get rid of the creatinine than your calculated GFR can drop.

smurtaw profile image
smurtaw in reply to Seasid

Most people just refer to them as estrogen patches but technically they are estradiol.

I never bothered to pursue the kidney failure. As soon as I dropped most of my sups it cleared up and has never been an issue since. I take supplement creatine so no cooking involved. Kidneys have been 100% from 1994 until today with the one exception. It could have been a lab error or a one time event - dehydration as you suggest. Dropping most of the sups was a good move anyway. My liver enzymes started heading down. And the wallet started beefing up :)

smurtaw profile image
smurtaw

Estrogen patches or gels might help.

c. 0.9mg E2 gel: E2 treatment increases some measures of bone density and bone strength in men and reduces bone remodeling, effects that occur in absence of endogenous T. E2 also reduces FSH; a potential oncogenic hormone: Effects of estradiol on bone in men undergoing androgen deprivation therapy: a randomized placebo-controlled trial - PubMed

pubmed.ncbi.nlm.nih.gov/356...

d. Hot flushes reduced: Androgen deprivation therapy-associated vasomotor symptoms - PMC

ncbi.nlm.nih.gov/pmc/articl...

e. 0.05-0.1 mg/day E2 patch: Transdermal estrogen in the treatment of hot flushes in men with prostate cancer - PubMed

pubmed.ncbi.nlm.nih.gov/106...

f. The resurgence of estrogens in the treatment of castration-resistant prostate cancer – PMC

ncbi.nlm.nih.gov/pmc/articl...

g. Treatments for reduction of bone mass loss include estrogen, weight-bearing exercise, calcium (1000 – 1500 mg/day) with vitamin D3 (800 to 2000 IU/day), Zytiga, and Xtandi. Exercise reduces depressive symptoms and improves QoL.

Pathophysiology of Bone Loss in Patients with Prostate Cancer Receiving Androgen-Deprivation Therapy and Lifestyle Modifications for the Management of Bone Health: A Comprehensive Review - PMC

ncbi.nlm.nih.gov/pmc/articl...

Benkaymel profile image
Benkaymel in reply to smurtaw

Russ, your point g. is one that causes me a lot of confusion. My CO has prescribed me calcium + vit D3 simply because I'm on ADT+ARSI as a precaution and I've seen other articles recommend it, but Tall_Allen has said a few times that we should NOT take a calcium supplement unless we have a deficiency. My blood tests so far show I'm bang in the middle of range for calcium so should I take it or not?

CAMPSOUPS profile image
CAMPSOUPS in reply to Benkaymel

What is ARSI if I may ask?

Benkaymel profile image
Benkaymel in reply to CAMPSOUPS

Androgen Receptor Signal Inhibitor

smurtaw profile image
smurtaw in reply to Benkaymel

I wouldn't supplement with it if I was in the middle of the range. If my D3 level was less than 25 ng/ml I would take 2kIU-5kIU D3 and no more than 100% of the RDA of K2 (MK4 and MK7 forms). I would target 30-40 ng/ml for D3 (25-hydroxy).

IMO the lowest risk and biggest benefit will be gained by adding some estradiol transdermally (I use a Climara weekly patch that delivers 0.05 mg/day).

What is CO?

Benkaymel profile image
Benkaymel in reply to smurtaw

Thanks, Russ. CO = Clinical Oncologist - I guess the UK equiv of MO in the states?

Benkaymel profile image
Benkaymel in reply to smurtaw

Although my calcium is mid-range, D3 is not tested in the standard blood tests I get so I'll have to look into getting that done separately.

Is the Climara patch you use enough to give you gyno?

smurtaw profile image
smurtaw in reply to Benkaymel

Watch the units. In the US the units of measure are typically ng/ml. UK will likely use nmol/l.

To convert nmol/L to ng/ml divide the nmol/l by 2.5 for example 100 nmol/l is equivalent to 40 ng/ml.

Some guys get gyno without doing E2. Low dose doesn't give me gyno.

spencoid2 profile image
spencoid2

i read in a few places that orchiectomy has less cardiac bone etc side effects than chemical ADT. one of the reasons i had an orchie.

Yingsang profile image
Yingsang in reply to spencoid2

Loss of Testosterone by either medical or chemical castration, will ultimately produce the same results, as to side effects. You would have to understand that T and collagen play an important role as to bone heath. You can try Prolia. The ultimate increasing bone loss, [bone density], as well as developing Osteoporosis, is all due to the loss of T permanently, or duingr long term use of ADT. I have heard some say that the side effects are worse than the disease. To this I do not have an answer.

TommyCarz22 profile image
TommyCarz22 in reply to Yingsang

Thank you

spencoid2 profile image
spencoid2 in reply to Yingsang

there are also the effects of the drug and the complex way it works and interacts with a lot more than just the testicles. it is not just a switch that turns off testosterone.

Seasid profile image
Seasid in reply to spencoid2

You are correct. That is why I prefer to stay on Degarelix. But I am not sure about all the plus and minuses.

Muffin2019 profile image
Muffin2019

I was on it monthly for a year, now every 3 months, it is a great product ypto keep my bones strong and keep the mets from forming. I have arthritis, degeneration in thr joints and stenosis in the spine so this helps me to keep moving.

SteveTheJ profile image
SteveTheJ

Your cancer will return, that's all you should care about. Other people can suggest different therapies but quitting the therapy means death.

gsun profile image
gsun in reply to SteveTheJ

Tommy said an ADT vacation, not stopping permanently I believe. Iam going to go over this with my Mo at the next appointment as well.

TommyCarz22 profile image
TommyCarz22 in reply to SteveTheJ

why is that ALL I should care about? you sound like dr fauci trying to scare (cheat) us all out of another thanksgiving and Christmas with our families. I won't live that way. God gave me a Life to cherish, not to squander

CAMPSOUPS profile image
CAMPSOUPS in reply to TommyCarz22

People like myself on chemo and families with children who have immune diseases be damned. Its every man for himself over wearing a silly ass mask.

SteveTheJ profile image
SteveTheJ

Cancer never goes on vacation.

TommyCarz22 profile image
TommyCarz22 in reply to SteveTheJ

with all due respect, I'm 55 pounds overweight, have high cholesterol, coronary artery disease, a fractured spine and am on the brink of osteoporosis. All related to the cancer treatment. That's what I need a vacation from. How can you be sure "Certain Death" is imminent, how can you be so sure? Living a life in constant fear is not living at all.

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