MDS to AML

[sherry]

First of all, thanks to all of you that post here. My father was diagnosed with MDS in April 2008. I stumbled on this forum and although I never posted, I got a wealth of information. My dad was 74 when he was diagnosed with RAEB-2. He was diagnosed as an intermediate-high 2. He was diagnosed after we noticed lots of bruises and he was short of breath. At first the doctor said a watch and wait but the following month his hemoglobin dropped further and she recommended Vidaza. He did fabulous on the drug. He only did four cycles though because the different injection sites became really intolerable and his counts had improved greatly (platelets normal, WBC normal and 11.0 hemopglobin) This was in Sept of 08. He received monthly blood tests and all counts remained the same until early May. His blood counts came back as Hemoglobin 10.2, White blood cells 37,000 and platelets 55,000. It also showed 5% blasts in blood. His doctor told us he was in transfomation to AML. She sent us to Simon Cancer Center to see Dr. Larry Cripe.He basically gave dad a death warrant. He said that he was to old for induction chemo and so gave us the option of trying Dacogen since the Vidaza helped him or a clinical trial.He had blood work done last Mon and white blood cells were 65%, Hemoglobin still 10.2 and platelets 24,000. The platelets have steadily fell 25,000 a week over the last 3 weeks which would have to tell me that his platelets would have to be almost nothing by this Monday. His doctor just told us to bring him in at any signs of bleeding.This concerned me because wouldn’t he be at a real high risk of bleeding? He had his first round of Dacogen this past week also. They told us they would try one round and they would be able to tell if it works if his blasts come down. How can this be? How aggressive is this disease? I have read different things such as weeks to 6 months. Any information on what to expect or advice would be appreciated.

[czaring]

First off … let me reach out to you with a cyber HUG!! Your story and mine cross in many ways.

My mom will turn 74 in August this year. She was diagnosed with MDS …. RA -5q …. in Nov 2004. It was ominous and scary. That said … her treatment was mostly successful for the past 4 years with just red blood cell booster. But things started becoming more challenging about a year ago. That all seems like a CAKE-WALK with hindsight. She transformed into AML and that was confirmed on April 29 of this year. Her Dr. predicted 2 – 3 weeks survival without intervention. We were STUNNED … to say the LEAST! She opted for intervention! She spent the next 31 days in the oncology ward at Swedish Hospital in Seattle with what I’m convinced was some of the best care in the country. She received the standard "induction" phase of chemo with 7 days of Cytarabine along with 3 days of Idarubicin. She was released to home a week ago with a Hickman line in place for her "consolidation" phase which was to follow after a break at home. However … her Dr. has informed us that a true remission was not reached. She is currently not producing leukemic cells … but she is not really producing healthy numbers of ANY cells. He predicts that leukemic cells will return unless we find furhter intervention. We are going to attempt that next with Vidaza. We are all crossing our fingers and sending our prayers for a positive outcome with Vidaza. At this point … she has decided against any further "chemo" similar to that 7-3 induction phase. She said she’s not convinced that the fight is worth feeling just marginal. She was otherwise a very healthy and vibrant 73 year old woman at the time of her transformation.

Best of luck to you and your family. I will wish for the best possible outcomes!!

And I’m curious …. does anybody out there have any experience with Vidaza subsequent to the typical "induction" phase of treatment for AML??????

With love and concern that only a fellow "member" can understand …..

cz

[sherry]

Thanks for your reply, I hate to hear that your family is going through the same thing. This is such a horrid ugly disease. My dad gets a blood draw this morning. I am hoping that his white cells and blasts have come down. What is crazy is how fast this moves. He had blood work on March 13 and all was stable then 8 weeks later this happens. Dad says he isn’t doing the clinical trial. It involves him having a lot of frequent tests and he says he just isn’t doing it. Here’s hoping for good news today. Keep me posted on your mom. I hope the Vidaza helps her. I wish we had of insisted that Dad continue the Vidaza. His doctor wanted him to have at least 9 cycles. The only side effect he suffered was pain and swelling at the injection site. Each time his numbers would go low, although not severely low and then rebound a little higher. Prayers for your mom.

[Tonia]

Hello Sherry,

I truly feel your pain since I am living with the same dilemma. My mom was diagnosed with RAEB-2 with 13% blasts in October 2006 and we lived through the nightmare of learning about MDS and it’s devastating effects. She was one month shy of her 80th birthday at the time of diagnosis and not considered a candidate for induction chemotherapy. She was treated with 3 cycles of dacogen (obtained through compassionate use) and after having a rough time with the 3rd cycle (blood counts bottomed out, developed pneumonia) we were bracing ourselves for the worst, that she had transformed to AML. And then a miracle happened, the BMB in Aug. 2007 showed 0% blast so her hematologist started her on Procrit. After 2 months of injections, her hemoglobin jumped to 12.2 and she was free of transfusions for 16 months. Her platelets and neutrophils never came back to normal levels, but were "stable" (neutrophils between 0.6-0.9, platelets between 60,000-80,0000). Then in March of this year, the unthinkable happened. Her blood counts dropped drastically and a BMB at the end of May showed blasts of 20%. She has transformed to AML. Her latest counts on Monday showed a hemoglobin of 7.1, platelets 38,000 and neutrophils 0.89. She is receiving blood transfusions every 2 weeks and neupogen injections 3 times a week. Her doctor wants to treat her with Vidaza since she responded quite well to the first hypomethylating treatment with Dacogen. The decision to try Vidaza instead of Dacogen was based on recent data showing that Vidaza has an overall survival benefit in high-risk MDS/AML.
The problem is that Vidaza is not approved in Canada, and the only way to access the drug is through the compassionate use program. This means that Health Canada needs to authorize the hospital to import the drug from the US and this can be a lengthy process. We have been waiting for 2 weeks and still no response from Health Canada. In the meantime the clock is ticking and every day that passes without treatment is a day less for my mom, and this is very frustrating. At times I feel so helpless, all I can do is cry and pray.
My mom has always been the pillar of strength in our family and to watch her get so weak and short of breath is heartbreaking.
But we must keep the faith and hope. So I am praying for a second miracle. I pray that the drug will be authrorized and that she can start treatment soon. While there are no guarantees that the drug will work, we need to try.

[sherry]

Many hugs to you. This is such an awful disease and there are so many things about it that I don’t understand. Dad tolerated Vidaza very well and had no side effects. I hope your mother gets to try it.

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