MDS progressed to AML
December 1, 2006 at 7:28 pm #16216LorettaVMember
I suppose my wonderful response to Vidaza has ended. I guess the other shoe has dropped. My blood tests and more importantly, my bone marrow biopsy results from my MD Anderson visit on Tues. were not good. I have not rcvd. fax of the pathology report but have talked with Dr. deLima’s nurse at MD Anderson several times today.Dr. DeLima said I have progressed now to AML. My excess blasts (the bad guys) that were 10-15% at my initial diagnosis in April 2005, had decreased with Vidaza treatment to 6% Dec. 2005, and 3% June 2006, are now at 32% with 7% in the periphereal blood. They are setting up appts. for me in the Leukemia Center at MD Anderson for next wk. They will contact me later today re. appts. Dr. deLima is saying I will probably need some more aggressive chemo.
He took extra blood 11/28 to check the antibodies and mentioned the possibility of finding a donor who matches at the A2 antigen but may be a mismatch at a less significant antigen. Their search has been continuing for the last 6 months without finding any matches. Dr. deLima wants my 3 children to come down to Houston to be tested. He also mentioned double cord blood transplant possiblity. Loretta/ aka Letty DeleteReplyForwardMove…December 2, 2006 at 1:56 am #16217katiebearMember
I’m sorry for your bad news, Loretta. I don’t post much but I read this forum everyday, and I feel awful. My dad is currently doing the Vidaza thing. He is supposed to be getting a SCT some time in the future. His sister is a perfect match for him, but it’s been delayed because she needs to build up antibodies as a result of having some sort of toxemia. He was supposed to go in November 20th, but that didn’t happen. I’m very worried that he will stop responding to the Vidaza before he actually gets to the transplant point. He just started his 8th round this past Monday. Before they tested you, did you have a clue that it stopped working? My dad mentioned to me on Tuesday after his CBC that his counts have ever so slowly been dropping, although he feels okay. You will be in my thoughts and prayers.
KatieDecember 2, 2006 at 2:16 am #16218gemloyearMember
LOretta, I’m sorry to hear that vidaza quit working. I hope that they find a match for you.
Good luck,EllieDecember 3, 2006 at 7:04 am #16219LorettaVMember
Katie, You asked if I had any clue that the Vidaza had stopped working. Usually with this disease I have only recognized clues in retrospect, but my CBC did seem to show counts dropping the last 2 months and not recovering. Also, when I began the last series of Vidaza shots I just didn’t feel right. I was more fatigued and starting to have slight shortness of breath. I hope your dad does well and I will add him to my prayers.December 3, 2006 at 3:12 pm #16220EngelMember
I wish you well and my prayers are with you. My husband was on Vidaza before he progressed to AML. At first it worked great and then he started to feel tired and had a slight fever every day. Go in at once, my husbands cancer doctor took too much time and the AML worked to fast, I lost him on Oct. 7, 06, I feel very strongly if he had received chemo sooner he would still be with me.
Blessings to you and I am praying for you. GloriaDecember 3, 2006 at 5:47 pm #16221willieMember
Loretta Based on my wife’s experience I would second Engel’s response. You need to go in as soon as possible. My wife’s doctor’s had her in the hospital the next day. WillieDecember 3, 2006 at 9:06 pm #16222KWJMember
Engel – how long after he was diagnosed with AML did he pass? Did he try any chemo? My dad was just diagnosed to AML. They said a year. That seemed really optimistic?? He is not eligible for chemo, they said he would not make it through.
Loretta – I am so sorry for you. I hope you health is good enough to do the induction. This disease is horrible.December 4, 2006 at 2:27 am #16223pattiMember
My MIL has had leukemia for at least a year if not longer (depends on whose dx we go by). She’s just taken really good care of herself during that time. There were times when she slacked off and we would immediately see her white cells jump. She would tighten up her regimen again and they’d go back down again. So, I think a year is not necessarily out of line. Not sure what his blasts are at but my MIL’s are well over 50% and have been for a long time. We are just now starting to see the leukemia take hold and it’s a pretty slow slide. I know for others it goes really really fast and I’ve seen that on the AML boards also. But for my MIL it doesn’t seem to be too fast. Or maybe it’s because she’s doing so much to try and push it off.
PattiDecember 4, 2006 at 11:44 am #16224katiebearMember
Thanks for your response and your prayers. They are greatly appreciated. This is such an unfair disease.
KatieDecember 4, 2006 at 4:18 pm #16225EngelMember
When my husbands MDS progressed to AML he went to the hospital immediatly and had chemo and went into remission at once. He was then Vidaza for one month and did very well all counts were in the normal range. Then second month of Vidaza he started with a fever and was treated with anitbiotics for about 5 weeks, I finaly insisted they admit him the hospital, they did a BMB and said his AML was back. We did chemo again but never regained remission, he did not have any pain and although very weak his mind was always with us. He lived three weeks after we went to the hospital, had no heart problems no pneumonia, the AML took his life. I will be praying for you and please get treatment at once. GloriaDecember 5, 2006 at 4:40 am #16226KWJMember
Thank you Gloria for your response. Dad can’t do the chemo – he has underlying health issues that the docs say would nothelp him with chemo. They have told him there is nothing more to do than supportive care. It is strange that he could do a mini transplant and maybe make it but not induction chemo. I don’t know. Hopefully Loretta will be able to do chemo and now Mike too.December 5, 2006 at 3:08 pm #16227RussMember
Loreta, My prayers go out for you and the other forum members who are fighting this terrible disease. My dx was about the same time as yours and the Vidaza seemed to work for awhile – about a yr. (Then BM blasts went up from 10 to 18%) Am now on Dacogen – just finished round 4 and will have a BMB next month. When I started round 4 my peripheral blood showed 40% blasts –
don’t know the significance of that since they had neen comming down to 4% from 31%. Will ask my Hemo next Monday – am hoping maybe the high peripheral blasts may be due to the BM pushing them out. Best wishes on finding a donor – my age (79) precludes any SCT. Praise God, I know my eternal life is secure through Jesus Christ.December 6, 2006 at 12:34 am #16228maueenhParticipant
I am sorry to hear that the Vidaza has stopped working for you. Did you have any indication that the Vidaza had stopped working before your BMB? Had your blood levels been falling over several months or did this happen within a one month period. As you may remember my dad is on Vidaza and I’m just wondering what I should be on the lookout for. I will keep you in my prayers.
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