ZOMETA???: We are just back from a... - Advanced Prostate...

Advanced Prostate Cancer

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ZOMETA???

WXYZ123 profile image

We are just back from a month in Germany at the Hufeland Clinic. Had one IV of Zometa there, Zoledrone Acid- for the bones- John has bone mets-...has anyone used this? Results? Also looking for an oncologist in the Westchester area of NY that will work with us..ie be willing to do things outside of the standard of care treatments. John is on Zytiga/prednisone and we are still waiting to see of that is doing the trick. He is doing the 250 mg with a low-fat breakfast method...will do a PSA early January to see if the PSA is dropping, so far it has only slowed down the increase- he is at 1127...Lupron never did a thing for him. We also do high dose Mistletoe IV's and other biological and homeopathics...his blood work is perfect except for PSA. Muscle atrophy from the Lupron, hot flashes, some fatigue...Any thoughts?

43 Replies

Zometa and the similar Xgeva are the two bone preserving agents approved for men with metastatic prostate cancer. Zometa + celebrex has been shown to increase survival by 22%. Has mistletoe extract ever been found to be useful against prostate cancer specifically, or do you think that all cancers are alike?

WXYZ123 profile image
WXYZ123 in reply to Tall_Allen

Mistletoe works on many different levels for strength and enlivening...important to keep a balance between killing the cancer and supporting the immune and total person.

Tall_Allen profile image
Tall_Allen in reply to WXYZ123

And I thought it was only for kissing under :-)

Oh, maaaaaaaan :-) lol, lol, lol, lol, lol, hahahahahahahahahaha....good one, Tall_Allen :-) Laughter is indeed the best medicine :-)

MontyB profile image
MontyB in reply to whatsinaname

I guess one could consider it to be a "good one" and at the same time another could consider it to be "thoughtless". I consider it to be the latter.

whatsinaname profile image
whatsinaname in reply to MontyB

For sure. To each their own. No one has ever denied that we are all different.

I reiterate that I found Tall_Allen's reply extremely funny.

MontyB profile image
MontyB in reply to whatsinaname

I look at who he was replying to and her situation. WXYZ123 who came to this blog to ask for help.

Yes, laughter is the best medicine, but one has to apply a little thought to it.

I strengthen my take on it...it was both sarcastic and thoughtless.

WXYZ123 profile image
WXYZ123 in reply to MontyB

Thanks :)! No one loves laughing more than John and I! AND it's great to be respectful of everyone's choices. BTW Mistletoe is used in 60% of all cancer patients in Europe, some in conjunction with chemo.

MontyB profile image
MontyB in reply to WXYZ123

Yes about respect. 60% of all cancer patients in Europe? Wow. Mistletoe sounds like something I would like to try, but I'm in a trial and can't take any supplements as long as I'm in it.

Take Care, Monty

Tall_Allen profile image
Tall_Allen in reply to MontyB

You obviously had your sense of humor surgically removed along with your prostate.

MontyB profile image
MontyB in reply to Tall_Allen

Obviously you don't have a clue about me.

My sense of humor is fine and my prostate is in place.

Take Care, Monty

Well, Tall_Allan, my reaction is the same as yours and, hadI been able to reply earlier, I would have said the same thing you did. I certainly can't see why anybody would find it offensive. People these days seem to be overly sensitive. I've been called a racist in print media, which I thought was amusing since the simple-minded twerps making such allegations knew nothing about me. It was just an (ineffective) attempt to get me to shut up.

I've found that those idiots that call you (or anyone else) racist are usually the most racist people.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/14/2018 10:41 PM EST

Break60 profile image
Break60 in reply to whatsinaname

TA’s reply was really funny considering his knowledge. I think it was sarcasm! 🤔

But I could be wrong!😇

whatsinaname profile image
whatsinaname in reply to Break60

If I read Tall_Allen right, it was sarcasm for sure. Superb sarcastic humor, imho.

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

Geezamacrip... my hobby is humor.... Pca or no Pca. So keep laughing cause it sure beats crying.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/14/2018 10:38 PM EST

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

I laugh when the humor appeals to me. I cannot force laughter otherwise.

Cheers, j-o-h-n

A PSA of 1127 indicates that the cancer has spread all over the body. So mistletoe apparently was insufficient.

You could join this clinical trial:

jcto.weill.cornell.edu/open...

WXYZ123 profile image
WXYZ123 in reply to GP24

Doing lots more than Mistletoe

GP24 profile image
GP24 in reply to WXYZ123

I tried several natural drugs and it did not impress my cancer at all.

The trial I mentioned will slash his PSA value and reduce the bone pain.

WXYZ123 profile image
WXYZ123 in reply to GP24

Ok thanks I’ll let John know about it

whatsinaname profile image
whatsinaname in reply to GP24

"I tried several natural drugs and it did not impress my cancer at all."

Thank you for telling it as it is, GP24.

The one Zytiga and low fat diet and the lack of Lupron may be contributing to his lack of PSA progress. Find a MO quickly and run your regimen by him. Zometa helps osteoporosis but I don’t know if it does much for the cancer. Ask for a bone density scan to see how at risk he is to fractures.

Not a low fat diet, just a low fat breakfast. If PSA has not dropped next test will go to 500mg, clinical study showed Zytiga 250mg taken with food 100% same PSA drop as 1000mg...after three months. Bone strengthening would be important for anyone with bone mets, to prevent fractures. Thanks.

Another trial to possibly consider.

clinicaltrials.gov/ct2/show...

Slots at this time are very limited, but I have been told there will be additional slots in the not too distant future (around 6 months). Reimbursement of some costs are provided such as hotel, airline tickets (patient only), and some for food.

Take Care, Monty

I’v Been taking Zometa for about a year now. I’v Had to discontinue it from time to time due to small flare ups in my mouth that could possibly be osteonecrosis. It’s carefully being monitored. Zometa for me is a necessary evil to help strengthen my bones.

WXYZ123 profile image
WXYZ123 in reply to karlsiller

What other side effects have you had?

karlsiller profile image
karlsiller in reply to WXYZ123

Hard to tell since I am also on ADT with it’s own side effects. Joint soreness is all besides the jaw thing. Here’s a site that might help. Www.drugs.com/Sfx/Zometa -side-effects.html

strummer profile image
strummer in reply to karlsiller

my husband had first zometa last week. had terrible pain in his leg. took OTC pain meds and it helped. but he took a Claritin next day and had much improvement. not sure if you have tried that. best wishes

Hubby had first Zometa last week. Excruciating pain in right leg that night. Took OTC pain meds and a Claritin and felt much better next day

WXYZ123 profile image
WXYZ123 in reply to strummer

What is the reason he was given Zometa?

strummer profile image
strummer in reply to WXYZ123

recent diagnosis of stage iv with many bone mets. zometa 1x month to build bone. also taking firmagon for hormone therapy and chemo.- first chemo today. had first zometa and firmagon last week. best wishes

Mkeman profile image
Mkeman in reply to strummer

That’s a lot of Zometa. Has he had a bone density scan to determine degree of osteoporosis? Also, did he have complete dental and mouth exam as Zometa in rare cases can cause serious jaw problems.

Mkeman profile image
Mkeman in reply to Mkeman

Also...some Zometa users on this site have said that slower infusion time cuts down on side effects. Minimum is 15 minutes but some stretch it out to 45 minutes.

strummer profile image
strummer in reply to Mkeman

yes the clinic insisted on a full exam and x rays by our dentist. will ask about slowing infusion. he had excruciating leg pain but he tried Claritin and that seemed to help. no bone density test. with numerous mets they are trying to avoid fractures. will be better prepared next month. take care

Mkeman profile image
Mkeman in reply to strummer

I would insist on a bone density scan so you have a baseline on osteoporosis or you won’t

know if all that Zometa is doing any good. And so you know which bones are the most vulnerable. You will get a numerical score for different bones including the spine. Ask for a referral to a physical therapist for exercises to help strengthen bones and ward off muscle loss.

strummer profile image
strummer in reply to Mkeman

thx I will mention the dexa scan. the ca clinic has their own gym with a P.T so he will have an eval with them re; best exercises etc..

Hope you get your info on treatments from a wider range of sources than cancer.gov...cancer is BIG business dontcha know!

If this site is meant as a support then let’s read about all kinds of options! And let’s be open minded and definitely throw in humor!!!

ITCandy profile image
ITCandy in reply to WXYZ123

Make it happen!

Yes minimize side effects and risks.

Lupron did nada so not continuing using it.

GP24 profile image
GP24 in reply to WXYZ123

A Lupron injection for three months did not lower the PSA value? Very rare. Did you determine how much it lowered the testosterone?

cute, I'll use it and give you credit. But I need your social security number to give you credit.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/14/2018 10:46 PM EST

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