Anyone Have Vidaza Cause Remission?

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RE: Anyone Have Vidaza Cause Remission?

by johnwc on Sat Jan 11, 2014 01:35 AM

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I would like to join this discussion.

I'm John and live in Portland, Or.  In early December I was diagnosed with CMML, low risk. Two days ago I met with the transplant specialist at OHSU (Oregon Health Sciences U.) and had a frank discussion of my prognosis.

I'm 66 and feel like a robust, athletic young man. (was an avid tennis player) My only symptom is fatigue.  My WBC keeps spiking up so we are starting the Decitobene in a few weeks. She said the number will guide the process.  Some people can be in remission for years but at some point the drugs stop working.

Transplant timing?  The donor search is beginning and will depend on the strength of the match.  If good match and I'm still strong, then a mini would be appropriate.  I have learned that there are a lot of uncertainties and this disease has a mind of it's own.

Anyway, I wanted to introduce myself and and say Hi to Veronique and Linda, is that correct?

Blessings,,,JOHN

RE: Anyone Have Vidaza Cause Remission?

by Txlinda on Sat Jan 11, 2014 02:14 AM

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Hi John, I'm Linda and am 67. I was diagnosed with CMML here in Dallas in November. I visited with the head of transplants at Baylor in Dallas and he said I was very early in the disease and a he wasn't even convinced that is what I had. He told my husband and I about transplants and risk associated and suggested I was at a watch and wait status. Went to MD Anderson for a second opinion talked to a CMML expert, got retested and he said I do not have CMML, I have myelodysplastic/myeloproliferative and myelofibrosis with 3% blasts. He said I was not a candidate for transplant and need to be observed, come back in 3 months. So that is what I'm doing. Know several people with aml and CMML who have had transplants, some more than once. Many many completely cured. One who got the transplant at the Hutchinson center in Seattle in 2002! I also did have a friend who recently died after a transplant. The statistics are getting better and better each year and I have read the mini is having great success. I'm on several groups in Facebook of people who have had transplants and the thought of living disease free are wonderful. I also have friends who have been on Vidaza 5-10 years but eventually it quits working. Veronique i believe is considering transplant and June. They may have more info. The website bethematch.com has great info! If you call the lymphoma/leukemia group they also have a program where you can talk to a person with your disease who had a transplant.

RE: Anyone Have Vidaza Cause Remission?

by Veronique on Sat Jan 11, 2014 03:04 AM

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Hi John: Welcome to our discussion. Seems to me that according to my biopsies I am farther advanced in the disease than you or Linda. At this point four specialists independently recommended the transplant as long as I am strong and I think I'll have to bite the bullet and go ahead with it. It's almost surreal for I continue to feel great with absolutely no symptoms and it seems an awful idea to bring this to an end by going through the transplant. Will have a decisive appointment at Stanford Cancer Center two weeks from today. Next week another round of Vidaza. I find it interesting that we are all same or almost age. John, hope a donor will be found for you soon. Mine was found in a matter of three weeks. Best wishes, Veronique

RE: Anyone Have Vidaza Cause Remission?

by Veronique on Sat Jan 11, 2014 03:23 AM

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Hi Linda: I tried to explain to a friend today what a big gamble the transplant is. Don't know if I was successful. I wish a watch and wait status was an option for me . But my blasts were initially high and the transplant was strongly advised right from the start. Vidaza has worked for me so far me, blood counts are good and blasts are at 8% now. However, if the transplant is my option now I have to take it. And with optimism. My son sent me a number of a Stanford transplant recipient, I'll talk a to her about her experience. You information is encouraging, thank you, Linda. I liked to read the words " many many cured". Bless you, V.

RE: Anyone Have Vidaza Cause Remission?

by Veronique on Sat Jan 11, 2014 03:30 AM

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Thank you, Linda, that's great info. I agree about the age. Yes, it does matter. The success stories on the internet are all young people. But I'll try your leads and will get In contact with transplant patients. So you have three months off now? If so, enjoy those days. Best wishes, V.

RE: Anyone Have Vidaza Cause Remission?

by Txlinda on Sat Jan 11, 2014 04:01 AM

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Veronique, Many Facebook transplant people are young but many are not. The Baylor Doc said that they are treating people into their 70's and especially with the mini. At MDA they said you get a transplant when you have no or few options as there is a risk. I also asked if maybe I did not have anything, haha. They said no but you are low risk. Well as you know this can turn quickly, so if I have the situation of few options or none, the transplant gives you a 75% chance. I would take it. I think that percent is low too as in bethematch it says with CMML the people they surveyed, about 85% lived and they were over 70! And those numbers are 10 years old! Every time I go to MDA I meet a new person who just had a transplant! They always wear masks even if it was 18 months ago. The recovery is long and I heard the most important thing is a good donor match. I am a watch and see what happens person as my blood is pretty normal. Nothing has happened in the last year but if things go south I'll probably try chemo, but at some point this might be my choice also. I think you will sail through this!

RE: Anyone Have Vidaza Cause Remission?

by Veronique on Sat Jan 11, 2014 04:22 AM

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Linda, you are a sweet person and I love your encouragement. I know, hahaha, how can I be sick if I feel so good? But the bone marrow shows dysplasia and the blasts are abnormal. The docs say, we know you are feeling good but one day - and nobody knows when - it will change. Then one transfusion after another and ultimately the next infection, let's say a pneumonia will do it. Quoting one of the doctors. In any case it feels good to have you rooting for me. I'll do my best to sail through it! Hugs, V.

RE: Anyone Have Vidaza Cause Remission?

by Txlinda on Sat Jan 11, 2014 05:04 AM

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You better keep us updated! Stanford is wonderful (my brother graduated from there) and they will work for you. Keep the mask on all the time, keep your mouth very clean and use the gargle stuff they give you (I read that on the internet!) and keep your spirits up. The first 100 days are very important. My personal opinion on this-- you will be recovering in the spring--the best. It is a time of renewal. I'm against transplants late in the year....

RE: Anyone Have Vidaza Cause Remission?

by Sunnsurf on Sat Jan 11, 2014 01:24 PM

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Hi John, I'm Diane from Florida. I am 76 years old and was diagnosed with cmml 1 in Oct. 2012. Was in the watch and wait stage with no meds until Oct. 2013. My white cells started spiking and the Dr put me in Hydrea 500 mg every day. That worked for two monthe then the white cells spiked again. I have just finished my second round of Vidaza .. Side effects were chills one day and the last day nausea. Also my platelets went to 10 at the first Nadir so I had a platelets transfusion. You seem to be a fine candidate for a mini transplant age wise and the Vidaza works for years for a lot if people. I was surprised yesterday to find my white counts had finally gone down after two weeks of Vudaza IV. How are your hemoglobin and platelets? Wishing you much success in whatever you do do. Thus is a good site and u will meet a lot of people here. Linda has kept my spirits up. Prayers and Blessings sent to Oregan from Florida. Diane

RE: Anyone Have Vidaza Cause Remission?

by johnwc on Sun Jan 12, 2014 11:29 PM

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Veronique and Linda,  So nice to meet you.

Diane, welcome. It is comforting and to reassuring to have intelligent discussion among us who are in the same boat and facing BMA.

So, after my meeting at OHSU and transplant doc, she emailed me and my WBC has spiked again from 25 to 33, Platelets are 95 and Hemoglobin 13.4.  Certainly not bad, but don't like the direction so will starting the Decitabine in the next couple of weeks.  Blessings,  JOHN

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