Zometa or similar for bone strength - Advanced Prostate...

Advanced Prostate Cancer

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Zometa or similar for bone strength

Chugach profile image
47 Replies

About to start this drug or similar variant to help strengthen my bones. Wondering what advice you guys have with these types of drugs. My mets are healing but 5 yrs of ADT has impacted my bone health - hoping this can help without a bunch more side-effects

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Chugach profile image
Chugach
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47 Replies
noahware profile image
noahware

Perhaps also consider low-dose estrogen patch?

prostatecancerfree.org/estr...

Kaliber profile image
Kaliber

It will be difficult to say how your Zometa infusions will go. Guys here on the group experience mostly mild side effects , seems like , and some experience severe side effects. I’ve been getting Zometa monthly for two years. I would be deep in the group of guys that have the most severe side effects. I have to set aside the first 5 - 6 days of every month to allow the side effects to wear off. I will say that the side effects seem to be moderating after two years worth of infusions. You will have to wait and see ... they will probably tell you this in the infusion clinic but before you go in , take a otc cold / flu antihistamine and bring one of those electrolyte sports drinks in some flavor you like. ( grape propel works for me ). I take ChlorTabs before I go in. Stock up on some Ibuprofen . Immediately after you get the infusion, start drinking the sports drinks to flush the infusion out of your kidneys . At the least you will probably experience a light version of the Zometa flu ( it only lasts a few days and vanishes suddenly ) , the chlortabs will help a lot. Here’s hoping you are one of the lucky guys, that doesn’t have the serious side effects. If you get “ hammered “ you can message me for what I do when it happens to me.

It’s hard to overstate how important the Zometa infusions are, I really need them and I want them no matter the side effects. I just pull up my big boy pants and move forward.

Good luck brother 👍👍👍💪💪💪

Chugach profile image
Chugach in reply to Kaliber

Thanks for the tips!

Kaliber profile image
Kaliber in reply to Chugach

👍👍

j-o-h-n profile image
j-o-h-n in reply to Kaliber

"I just pull up my big boy pants " Huh? I thought you wore mini skirts....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/30/2020 9:45 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

I used to wear big boy pants to cover my mighty manly parts.

Now I just wear big boy pants to cover my giant ADT a$$ and gut ... no manly parts left.

Just say’in 😂😂😂😂

j-o-h-n profile image
j-o-h-n in reply to Kaliber

"no manly parts left."

I beg to differ with you..... If you carry a wallet in your big boy pants then as far as women are concerned that would be your manly part that they're most interested in........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/30/2020 11:21 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Ha ha haaaaaa hahaha I nearly spit up a soda I was drinking when I saw this yayahahahaya 😂😂😂😂😂

Cheerr profile image
Cheerr in reply to Kaliber

Hi my dad had his 1st zometa infusion few days ago. He is experiencing tiredness n lack of sleep since then. Any tips on how to handle it?

Kaliber profile image
Kaliber in reply to Cheerr

As zometa goes those are mild side effects, that’s a good thing. Usually your dad would start taking a otc decongestant like used for the flu and drink sports drinks with electrolytes that make him pee a lot to flush out the Zometa. For most the side effects of Zometa disappear suddenly in a few days to a week or so. Don’t get the “ non drowsy “ type of otc decongestant and it would likely help him sleep. Some side effects of Zometa can include extreme bone pain , your father is one of the lucky guys .

💪💪💪👍👍👍😁😁

Cheerr profile image
Cheerr in reply to Kaliber

Thank you. Given him the anti histamine for 2 days and he’s sleeping better 😊

Kaliber profile image
Kaliber in reply to Cheerr

Those Zometa side effects usually just suddenly disappear ... I just suddenly feel better again and that infusion is over. This can happen 5-8 or more days after the infusion. Its different in different guys. Then I’m good for the rest of the month, until it’s Zometa time first of next month and the pain train cycle repeats with my next infusion. my Zometa infusions are critically important to me because of met bone damage and adt bone damage. They are very unpleasant but I strongly want them.

Best wishes 💪💪💪👍👍👍❤️❤️❤️

Cheerr profile image
Cheerr in reply to Kaliber

Thank you so much. Yes if it’s good for the bones, a little discomfort shouldn’t hurt. 😀

Do you also happen to take Celebrex along with Zometa?? (WRT to the case study that both taken together proved better)

Kaliber profile image
Kaliber in reply to Cheerr

I don’t take Celebrex. My oncologist feels like there is too much risk with additional possibility of heart attack and stroke on top of the serious instabilities already caused by my adt and conflict with my bp meds. Not worth the risk. Said Celebrex was taken off the market briefly due to heart attack and stroke issues but fixed with stronger wording on label. Three times more at risk of heart attack using Celebrex. Google “ is Celebrex bad for your heart “ for more info.

Cheerr profile image
Cheerr in reply to Kaliber

Yes I did see that it was once banned and also leads to increased heart issues. And that was scary to read. Don’t want to do more harm than good.

Kaliber profile image
Kaliber in reply to Cheerr

It’s probably fine in people that are less at risk ... a good robust conversation with your medical team is best in this case. 🎅🎅🎅🌼🦋🌻🌸🌈❤️❤️

Cheerr profile image
Cheerr in reply to Kaliber

Agreed I’m not so confident to make a self decision in matters where risk is involved. I’ll check with the doctors next time. Wishing you happy holidays 😀🎄🎉

Kaliber profile image
Kaliber in reply to Cheerr

Happy new year to you a d your loved ones friend.

💪💪💪👍👍👍🌻🦋🌈🌼🌸❤️❤️

Tall_Allen profile image
Tall_Allen

Adding Celebrex to Zometa has been found to increase survival by 22%.

Chugach profile image
Chugach in reply to Tall_Allen

Allen - does the zometa actually help slow cancer? I’ve got my PC managed good now with Keytruda- just that extended ADT has my bones weaker, one rib is broken from an older met, but scans indicate much reduced uptake. Unfortunately I have an allergy to Celebrex.

Tall_Allen profile image
Tall_Allen in reply to Chugach

"does the zometa actually help slow cancer?" No, it's been proven that it doesn't. Neither does Celebrex. There seems to be a synergy in combining them.

Chugach profile image
Chugach in reply to Tall_Allen

Interesting- thanks for the information

tango65 profile image
tango65

Denosumab (prolia or xgeva) is effective to treat osteoporosis and prevent skeletal events in cancer with bone metastases. . Zometa can have the same efficacy but it may have negative effects on the kidneys.

rxlist.com/zometa-drug.htm#...

Both drugs reduce osteoclast function (less bone reabsorption) but the resulting extra bone could be different since bisphosphonates (zometa) may reduce bone turnover which it could result in atypical fractures.

pubmed.ncbi.nlm.nih.gov/155...

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

Chugach profile image
Chugach in reply to tango65

Thanks for the info

Shooter1 profile image
Shooter1

Get a dental clearance first. Friend of mine has necrosis of jaw and it's no fun. ONJ is nothing to sneeze at. My MO says I cant have zometa or other bone drugs at this time acct possibility of more dental problems because of history of fractured/pulled teeth.

Kaliber profile image
Kaliber in reply to Shooter1

Excellent advice shooter . My infusion clinic won’t even seat me in the back before they question me about anything done to my mouth. dental work, tooth loss etc. 👍👍👍

Chugach profile image
Chugach in reply to Shooter1

Got it done

tango65 profile image
tango65 in reply to Chugach

The main dental problems are infection leading to teeth extractions. Extractions and other surgical dental procedures (implants) are associated with necrosis of the jaw in people taking denosumab or bisphosphonates.

ctarleton profile image
ctarleton

Anecdotally, 7 years ago I was very metastatic to many bones and had a PSA in the thousands at original diagnosis and had monthly Zometa IVs for about 42 months, followed by quarterly IVs for another 2 years, and more recently discontinued. Never had any adverse side effects. The accumulated "sticks" for prior blood tests and the IVs themselves and scheduling/making those appointments can get old after a while. I've known a couple of other men who did not tolerate Zometa so well and who tried Xegeva (denosumab) injections instead.

tallguy2 profile image
tallguy2

I have been doing Prolia every 6 months for the past 2 1/2 years since chemo. No obvious side effects. I need to investigate adding Celebrex per Tall Allen’s advice.

Chugach profile image
Chugach in reply to tallguy2

Keep in mind Allen said that was working with Zometa

Irun profile image
Irun

I had 3 monthly Infusions for about a year but had to stop as they gave me severe tooth pain and near permanent gum inflammation . Luckily my osteopenia was mild and calcium tabs on their own seem enough but sadly for me those side effects made life uncomfortable .

carbide profile image
carbide in reply to Irun

Me too. Very painful.

doklam2017 profile image
doklam2017

HiMy doctor has been giving me Denusumab (xgeva ) from day one along with firmagon, Degarelix.

It was a must he said to avoid any SRE .

You may speak with your doctor about the same.

Thanks 😊

carbide profile image
carbide in reply to doklam2017

What is SRE?

Chugach profile image
Chugach in reply to carbide

? Skeletal-Related Event (aka - broken bones). ?

beogradjanin profile image
beogradjanin

I was using Zometa monthly for almost 2 years, without any side efects. Than stopped for another 3 years, because my bones were ok, without any pain. One year ago, when pain come back, I started again. This time not regular monthly dose, but just just 4 IV during this year, becouse of Covid 19 restrictions. Pain left after second dose, so I don't push. Three monthly period is fine also, I found. My mets are in the bones in the region of hips and but, plus 1 in spine and 1in rib. My oncoligist does not support me taking Zometa (along with ADT & Xtandi), since in my country, they alow you to take Zometa only if your calcium is above 3,5. Go for it, it helps a lot!

CountryJoe profile image
CountryJoe

Take acetominophen the day before and severa days after for body a hes @

skateguy profile image
skateguy

Do resistance work-outs instead. A side affect of Zometa is that bones may not heal. A number of dentists told me this. I was shown pictures of the unhealed jaw bone after a tooth extraction. Not pretty. Talk to your doctor about the side affects.

MateoBeach profile image
MateoBeach

Benefits outweigh the risks. Just keep up with your dental hygiene regularly and have any dental problems identified and addressed early. Then osteonecrosis becomes uncommon.If you have more severe side effects from Zometa then switch to denosumab. (The higher dose is Xgeva at first, then dial it down to Prolia dosing for long term.) Keep Calcium normal - you may need a supplement the first year. And yes, add Celebrex (generic celecoxib). I take 400 mg/day.

One MO told me there was evidence that denosumab (and probably Zometa too) make the bone micro-environment less favorable for metastasis to bone. Another very good thing to have in favor of it.

Nous profile image
Nous

hi Chugach ... perhaps consider checking-out Bone Basics by AOR (Advanced Orthomolecular Research) ... it's natural ,,, great results; no side-effects

Atlpapa profile image
Atlpapa

I'm also about to start Zometa infusion on Dec 8th and have been curious about this. My full story is in my bio but I was diagnosed with advanced Pca in January 2020 and have been taking Eligard (Lupron) injections ever 3 months and Xtandi 160mg/day since February. I have bone mets on the pelvis. I had a bone density test done of spine and hip and T score was -3.1 on spine and -2.3 on hip. My urologist wanted me to take Xgiva for the osteoporosis /bone health but insurance denied it and said go the Zometa route (saves $$). My side effects from Xtandi and Eligard are mild s I'm hoping SE from Zometa will be also. I did go to dentist and had 2 teeth removed that would have been to come out in near future to clear the path for Zometa.

What were your T scores on bone density scan? I've read peoples comments about not taking Zometa because of SE, and now I'm in doubt if I should start on it.

Chugach profile image
Chugach in reply to Atlpapa

I’m in the mild to moderate osteopenia range for T scores (-1 to -1.5) depending on site.

carbide profile image
carbide

I am was on Xgeva brand bone strengthener. January 7th 2020, I had dental work 10 teeth extracted.Six weeks later my oncologist said we will start Xgeva. Had my last Xgeva shot 4 weeks ago. Xgeva was causing my jaws not to heal. Sad, that it took me so long to put together.

Thanks doctor for bad job of monitoring.

So only have cleaning if you wish.

No deep dental work.

Chugach profile image
Chugach in reply to carbide

That terrible, but happens all the time. Too few doctors seem to track what’s going on at the proper level - leaving patients to have to figure it out

Chugach profile image
Chugach

You guys are all awesome- such a wealth of knowledge and unwanted experience in this group

westjl2 profile image
westjl2

I was on Zometa for almost 4 years but my MO stopped it about 6 months ago. Said it losses effectiveness and it is good to “take a break”. I was very fortunate and had no side effects.

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