against the tide.....: Has anyone asked... - Advanced Prostate...

Advanced Prostate Cancer

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against the tide.....

greatjohn profile image
23 Replies

Has anyone asked their doctor about taking Xgeva every other month? The side effect suck...so wondering if it would still help with bone strength, but be easier tolerated this way? Has anyone NOT started one of the bone drugs....who is on Lupron for 3 or 4 years...? On Lupron and Xtandi for a few years? Is is necessary...???? or could you just be "careful" and try not to break anything?

and...while I am asking so many questions....LOL...

"does anybody really know what time it is?" "The way to San Jose?" "where you're going to" etc.

gJohn

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greatjohn
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23 Replies
SPEEDYX profile image
SPEEDYX

I would think a bone scan can indicate the need for Xgeva...Chicago knows the time and Dionne Warwick can tell you the way to San Jose!

noirhole profile image
noirhole

I have been on Lupron for the last 6 years since diagnosed. Seems standard to me at tbis point. Not one oncologist has suggested suspension just adding treatment on top of baseline lupron. Xgevia injections every 3 months unless I have anticipated dental care. Have to go in tomorrow for xgeva.

tom67inMA profile image
tom67inMA

This has been an ongoing debate between me and my oncologist. From my online research, monthly Xgeva seems like overkill. However, Xgeva (or more specifically, the RANKL it targets) interacts with the immune system and may provide survival benefits beyond bone health, particularly when paired with immunotherapy.

For more info including links to several studies, see my post from about a month ago: healthunlocked.com/advanced...

Magnus1964 profile image
Magnus1964

When I started xgeva it had to be administered every 28 days. Now that time line has been relaxed to up to a month and a half.

nobaday profile image
nobaday

I’m in Canada. My onc says the US typically over prescribed Xgeva so not for me yet. I’ve been on Zytiga 30 months now. But I’m only 58 years young.

Do the dexa bone density scan to see if necessary. My onc advice, don’t take if not necessary !!!

Tall_Allen profile image
Tall_Allen

I think one should have a DEXA scan before starting on Xgeva. One of my friends, who was on ADT for several years, never needed it because his bone mineral density was high from years of working out at the gym. Also, I think it's a good idea to monitor serum Vitamin D and calcium levels, and not supplement if it isn't needed.

GoBucks profile image
GoBucks

I have bone mets. I'm on Lupron & Zytiga. My Dexa scan showed osteopenia. So MO started Xgeva. I get a shot every 6 months and have noticed no side effects.

tonmead profile image
tonmead

coming up to four years on ADT after chemo. PSA started rising so I've just started Xtandi. My onco has not mentioned Xgeva. Grateful Dead can answer your questions, Im in UK so my specialists are Pink Floyd.

monte1111 profile image
monte1111 in reply totonmead

If you were in New York, j-o-h-n would be your specialist. You would most certainly be wearing a rubber glove on your head and flippers on your feet.

j-o-h-n profile image
j-o-h-n in reply totonmead

youtube.com/watch?v=p9y9iLt...

youtube.com/watch?v=D8UEmLO...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/01/2020 7:01 PM DST

michael00 profile image
michael00

My doc put me on prolia instead of xgeva. One shot every 6 months. His words were more often was a waste of medical resources and an inconvenience to me

leo2634 profile image
leo2634

I get Xgeva monthly and have been taken off it several times for Calcium levels being too low and put back on. My Doctor says it's needed so I guess you can go off of it and its not required at the exact 28 day intervals. I'm off it now due to oral surgery of which it played a part in talk about your side effects. I'm actually reluctant about returning to Xgeva so I'll request a bone density scan to see if it's needed. I don't want to have the oral surgery I just went through again. Leo

MateoBeach profile image
MateoBeach

Time slows down on a fast train to San Jose, GJ. Dexa scan. Maybe the 6 month Prolia would be the Goldilocks solution for milder osteopenia.

EdBar profile image
EdBar

I’ve been on Lupron for over six years and Xtandi for five. I was on Xgeva at one point and your right, side effects suck. Snuffy Myers had prescribed it together with Celebrex saying that it provided a survival advantage for metastatic PCa.

I stopped using it after about a year or so due to the side effects and inconclusive evidence regarding the effectiveness of the combo (per Snuffy). I get a bone scan every two years and my bone health is great, I guess diet and exercise is the trick. I no longer take any calcium or vitamin D supplements and haven’t for a while now unlike when I first was dx.

I also have used estradiol patches for several years now for ADT side effects which also help with bone health.

Ed

dentaltwin profile image
dentaltwin

Perhaps dumb question: is Xgeva given with the intent of shrinking bone mets (and thus preventing pathologic fracture) or more in general due to osteoporosis/osteopenia secondary to ADT?

greatjohn profile image
greatjohn in reply todentaltwin

As I understand, to strengthen the bones🌲

V10fanatic profile image
V10fanatic

I am working with Dr. Scholz at Prostate Oncology Specialists and he suggested every 3 months for me.

greatjohn profile image
greatjohn in reply toV10fanatic

I’m gonna see what my oncologist says about that🥰

beatPC profile image
beatPC

I'd been on Lurpon Xtandi for four years, then CP-1205 trial for four months, then Abiraterone-Prednisone for another four months or so. Currently on docetaxel, and looking at olaparib trial. I'm not sure what your question is though. Can you elaborate?

greatjohn profile image
greatjohn in reply tobeatPC

Hey Beat...

my question probably doesn't pertain to you...since you don't appear to be on Xgeva. I am wondering if any people (and some have said yes) have cut their dosage back to once every two months...instead of once a month. It's for bone strengthening...

Thanks, though,

John

monte1111 profile image
monte1111

After almost 3 years of Xgeva, I was changed from every month, to every 3 months. Dr. said "we have found that after 2 years of Xgeva you should switch to every 3 months or your teeth may fall out." Had 6 month lupron shot today. Next month will be 3 years on Xtandi. Last psa <0.1 Yearly bone scan in about 2 weeks. I take 2 200 mg Celebrex every day. Believe that is about half of what was given in clinical test, but dr. says that's all she'll give me. Never had bone density test or testosterone test. Hope you are dealing ok with the Xtandi now. Fatigue and anemia seem to be par for the course. My taste buds seem to be almost dead and I envy your love of food.

greatjohn profile image
greatjohn

you answer is exactly what I am thinking. I have copied and pasted it exactly to "read" to my Doctor on my next Zoom Visit this month. Did you get pain from the Xgeva in your bones? has this improved? I know it's hard to tell improvement with all the pains and issues we all deal with....J.

Break60 profile image
Break60

I switched from monthly to quarterly after a couple years and good Annual bone density scan results. Recently I stopped it completely due to pain in groin and hip .

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