Questions for people who've used Vidaza

[patti]

Jerry,

For as many emails as you gotten from people peeved about what I write, I’ve gotten as many or more from people wanting more info and asking me not to stop. This is a public forum and those who ask about natural stuff have every right to hear what others have to say. When someone asks why should we have to private mail each other because you don’t like the advice? Because right now, that is what is happening. And in two more years when someone comes along like I did two years ago searching, they won’t have any more answers then I did because you don’t like it being posted in public.

No, Dr.Kou didn’t prescribe mom’s neupogen and transfusions. We are doing supportive care while we do the natural because we have to, not because we want to. If you have a broken leg you use the crutches until it’s healed. And I consider chemos to be far more toxic, BTW. We chose to practice complimentary medicine for the time being because we have no choice.

When I came looking over two years ago for information on how to treat MDS naturally there was nearly nothing. We had to do all of our own research. Making recommendations to someone for what they can try is something I wish we’d had two years ago. I was grasping at straws two years ago also but still had the intelligence to do my own research. Which BTW, is almost never with mom’s MD. I read books, search the web, talk to others, but none of them doctors at the point that we started. As a matter of fact, we didn’t even find mom’s two ND’s until more then a year into her disease. I haven’t killed her off yet and don’t expect that mung beans, CLO or jujubees are going to hurt anyone here either. You guys talk all week long about “what works for so and so, or yourself, etc.” and you have a problem with what works for us because you think it’s “prescribing.” Bull pucky. I just don’t give MD’s the credit that you do. There isn’t a single doctor we’ve seen that if we had run any of the stuff mom wanted to do past them would have approved of it. What makes you think they would? People can ask their doctors till their blue in the face about taking this and that. They don’t have a clue. The one time we did ask we were told none of the stuff we wanted to do would work anyway so why bother? Know what I learned that day? Don’t ask your doctor anything about natural therapy. That’s the response that everyone more then likely will get. I have encouraged enough people to seek out an ND enough times that anyone doing a search can see that.

When we’re working on some issue with mom we ask the MD what they’d do and then we do the opposite. On purpose. And so far, we’ve been right every time. So I’d say we’re batting pretty well right now.

If you want to have your own little circle of people who need to have a place to piss on then have it, but if people ask for info/advice I will give it.

Patti

[Frankie]

If you want to have your own little circle of people who need to have a place to piss on then have it, but if people ask for info/advice I will give it.

Patti…
Shame on you.
ENOUGH!!!!!!!!!!!!!!!!!!!!!!!!

Frankie

[Taffy]

Thanks for your input, Jerry ,Patti and Russ, it is more info than i have ever gotten so far.as far as her mought sores she is on a prescription of 2 different types but they just done seem to work. She is losing more weight and the doctor wants to see her Tues for more bloodwork so i would assume he didnt like some count. She just finished her vidazda for 7 days at the end of the week. I guess well see what they say at the doc. on Tues ..Thanks again for your help.

[Terri]

Taffy, Bob was on Vidaza, currently he is off, If you see some of my previous post he went through some bleeding issues. Bob uses an over the counter rinse for the sores in his mouth, Rincanol I can’t find it everywhere but its in a green box. Usually CVS or Walgreens. He swishes and does not swallow but it really helps. But I do agree you should check the ingrediants and then ask your Dr before using. I keep a journal and I list all of my questions for the Drs that way I remember what to aks. I also keep in it besides his weekly counts, his vidaza cycles, etc etc. It has come in so handly. I also have a page with all of his meds because it does help when someone ask for that info.
This disease is different for each and every patient. Bob is doing the Standard med and some alternatives – We did seek a Nutritionist to help us with the Natural stuff.

[patti]

Taffy,

Hang in there. It is a bumpy road at times and can be hard. There is a lot of info to be had on this forum and so many experiences that can be shared to encourage and give more info. Take care.

Wish you well,

patti

p.s. I second Terri’s notebook idea! We couldn’t live without ours.

[Taffy]

Hello, Today i am more savy to what is going on with my aunt but she is not having a very good time of it. she has more treatments the first part of the month,but she can hardly see. I dont know if this is a typical sign for these propblems or if her Lichens Planus is in her eyes. She goes to an eye spec. next week .She has lost 2 more lbs. which puts her at about 96 97. Have you noticed wieght loss being a part of this treatment process or is it the leukemia. My other Aunt says that the doctor never really says much to her. Thanks …

[Taffy]

Hello, I am still caring for my Aunt and she is seeming to wither away. She is depressed and got a bad report about her eyesight,. They also want to do another bone marrow test because…. Am i to assume they think the problem is in her bone marrow or what?? Thanks…Taffy

[franm]

Hi again:

Well, Jim’s BMB was good but the doc said that most people that get off Vidaza even though the Biopsy is good will get worst if they don’t continue the Vidaza. His WBC was 2.8, Plat 198 and Hem 13.8.

He started back on Vidaza for the 6th time and he has it for 7 days and 26 days off. He sleeps a lot and so far that is all.

Fran

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