vidza just stopped working

[katza]

My dad was dx 3/03 mds probally from the chemo received fighting non-hodgkins lymphoma.

Since Vidza came out, he’s been the poster child for it. He has been completely transfusion free since he started, and has had hbg of 13.5 (at the best times)!!

Just recently his doc told him that it appears the vidaza has stopped working. Apparently too many big cells in his body (if this makes any sense to anyone.)

This may sound naive, but he’s been doing so miraculous that I thought we had a chance at beating this mds nightmare, and now I’m back to feeling that completely overwhelming worried sickness that makes me want to throw up 24/7.

Has anyone had this experience with Vidaza just stopping to work after wonderful, almost unbelievable results?

B4 Vidaza he tried Thalimade (can’t remember exact name), but it didn’t work for us. Has anyone tried anything else that has had good results?

Last question, I’ve tried doing research on the new Revlimid that’s hopefully coming out soon. I know it helps patients with mds 5q, does it help the general population of mds patients too?

Sorry for the long post, it’s almost 2:30 am and I just couldn’t sleep, had to look for help.

Best of wishes to everyone,
Lisa

[sugarwhale]

Dear Lisa,
My mom and I know exactly how you feel. My mom took Vidaza for about 3 months. It worked wonderfully for those 3 months; then it stopped working. Her hemoglobin plunged and she was back on transfusions again. She also tried Thalomid. That worked also for a short time; it too stopped working. Both the Thalomid and the Vidaza gave her some rather bad side effects.
Now, like you, we are anxiously awaiting the Revlimid. There is a very good chance that it will be approved by the FDA on or before January 7. It is already being manufactured.
From what I read, Revlimid helps many kinds of patients, including MDS patients with chromosome abnormalities other than 5q. It does work in a greater percentage of patients with 5q than with other chromosomes, however. It also works for multiple myeloma,CLL and (I think!) a few other cancers. Personally, I am optimistic about the Revlimid. When it works, it may not be forever. However, by the time it stops working, maybe there will be something better!
Lisa, I see that you are up late. So am I. I will post this and look back in about an hour. If there’s another message, I’ll answer. In the meantime, let’s look forward to the Revlimid.
Best wishes,
Janet

[sugarwhale]

Dear Lisa,
You must have finally slept. There are a few other treatments available other than the forthcoming Revlimid. There’s arsenic trioxide (not as fearsome as its name) and decitabine. However, there are some possibly serious side effects. Personally, I think the forthcoming Revlimid is a better bet!
My mom has just recently started on Essiac Tea. It MAY be working. It’s too soon to tell yet. However, it can’t hurt anything.
I do have a thought that I haven’t seen much about on this Forum. The fact is that more and more people are getting MDS, since more and more people are surviving cancer. With so many cases of MDS, it’s a drain on the Nation’s blood supply. This is why I think they are going to try to do something! I hope I’m correct, and I hope they do it soon!
I hope all this helps! Keep in touch with this Forum. The people here are nice and very helpful.
~~~ Janet

[Kathryn]

Hi Lisa, my father was on Thalidomide & Vidaza. When that began to be less effective, the doctor switched him to Trisonex. There was a period where he was still getting some residual effects from the Vidaza. Apparently it is commonly used for elder patients when there is no other alternative. He was doing alright on that… When you read about it, I suppose as with any medicine, it can be a little worrisome, but he never had any severe reactions on it.

Best wishes to you and yours,

Kathryn

[katza]

Thank you for the responses, Janet what is Essiac Tea?

Kathryn I’m sooooo sorry to hear of your loss, I just wanted to tell you that I admire you for staying with this board after such a loss. I do alot of lurking and research on this site but not much posting, I find myself in tears usually as I read the posts and find it hard to believe that people here are still functioning after the loss of the people they love so much. When I think of losing my dad, I can’t imagine how I will find the strength to breathe.
Lisa

[sugarwhale]

Hi, Lisa!
I know how you feel about your dad. I lost my dad in 2000; my mom is my only living relative now. The way I figure it is that I MUST do my best to go on living well, because I would be letting them down otherwise. I don’t know if that helps, but I certainly know how you feel.
Essiac Tea can be found in health food stores. It’s an old Ojibway treatment that was given to a Canadian nurse. It’s a bunch of roots. It will not hurt you, but be careful of the dosage. Even my doctor now says that it will increase red blood cell production. Look earlier on this Forum; I am new to Essiac Tea, but some of the people here know a great deal about it. My mom has only been taking it for about 10 days. There is a post here called “What is Essiac Tea?” which will give you a lot of information. Good luck!
~~~ Janet

[Kathryn]

Lisa, thanks for your thoughts…

Janet said it perfectly, “I MUST do my best to go on living well because I would be letting them down otherwise.” There isn’t a day that goes by that I don’t think about my dad, who he was and what a wonderful and positive influence he was, not only on my life, but on others that he touched… I just try not to go “there”… It has been a huge loss. My daughter had knee surgery the day before Thanksgiving… She cried for her Granddaddy when she woke up. It was heartbreaking because he’s been there for every surgery. We went by his grave after we left the surgery center and it really hit home with her that he was gone. Quite sad…. Aside from that we talk about him being on a beautiful holiday at the beach… A survival tool…

When I read the posts on this board, it really makes my heart ache… Though for a short time, I was there, and as they say, “hind sight is 20/20″… This board was such a huge support to me and I will do what I can to give back…

How is your father doing? I hope that things are looking up.

Take good care… I’m sending positive thoughts your way.

Kathryn

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