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

Advanced Prostate Cancer
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ZOMETA???

WXYZ123
WXYZ123

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?

47 Replies
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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
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
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
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
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
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
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
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
Tall_Allen
in reply to MontyB

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

MontyB
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

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

But I could be wrong!😇

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

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

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
WXYZ123
in reply to GP24

Doing lots more than Mistletoe

GP24
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
WXYZ123
in reply to GP24

Ok thanks I’ll let John know about it

whatsinaname
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.

ITCandy
ITCandy
in reply to WXYZ123

My thought would be to start with the recommended dosages of Lupron and Zytiga w/o food and then tailor it after you know that it’s working. Is it the exhorbatant cost that has you going this route or would you prefer to use as little cancer drugs as possible to minimize side effects?

WXYZ123
WXYZ123
in reply to ITCandy

Yes minimize side effects and risks.

Lupron did nada so not continuing using it.

GP24
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?

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

Here's more info on mistletoe and cancer:

cancer.gov/about-cancer/tre...

And yet another inappropriate mistletoe joke:

It was slightly before Thanksgiving. The trip went reasonably well, and I was ready to go back. The airport on the other end had turned a tacky red and green, and loudspeakers blared annoying elevator renditions of cherished Christmas carols. Being someone who took Christmas very seriously, and being slightly tired, I was not in a particularly good mood. Going to check in my luggage (which, for some reason, had become one suitcase with entirely new clothes), I saw hanging mistletoe. Not real mistletoe, but very cheap plastic with red paint on some of the rounder parts and green paint on some of the flatter and pointier parts, that could be taken for mistletoe only in a very Picasso sort of way. With a considerable degree of irritation and nowhere else to vent it, I said to the attendant, "Even if I were not married, I would not want to kiss you under such a ghastly mockery of mistletoe." "Sir, look more closely at where the mistletoe is." (pause) "Ok, I see that it's above the luggage scale, which is the place you'd have to step forward for a kiss." "That's not why it's there." (pause) "Ok, I give up. Why is it there?"

"It's there so you can kiss your luggage goodbye."

WXYZ123
WXYZ123
in reply to ITCandy

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

ITCandy
ITCandy
in reply to WXYZ123

Ironically, I was going to post an excellent article on Mistletoe written by a naturopathic Dr but didn’t feel like dealing with the fallout from the hard core science guys on this site.

I’ve researched and tried many natural treatments while on ADT and wouldn’t rely on government web sites for anything but don’t mind at all if they pay for my cancer meds. They can always tax the large corporations that probably contributed to my cancer diagnosis anyway.

This indifference with T_A is that we all know he doesn’t think much of natural medicine and some could perceive that he was mocking a new member who came here looking for help. I know this isn’t the case and I thought his joke was pretty funny..

And laughter truly is great medicine.

WXYZ123
WXYZ123
in reply to ITCandy

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
ITCandy
in reply to WXYZ123

Make it happen!

j-o-h-n
j-o-h-n
in reply to ITCandy

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

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
WXYZ123
in reply to karlsiller

What other side effects have you had?

karlsiller
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
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
WXYZ123
in reply to strummer

What is the reason he was given Zometa?

strummer
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
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
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
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
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
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..

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