Mds/cmml-2/raeb-2

[forevr30]

Hi everyone! I am hoping to find some help here. My husband who is 62, was diagnosed this year with CMML-2. After a 2nd bone marrow biopsy, they changed his diagnosis to RAEB-2. I can find little information about RAEB-2 and am wondering if any of you can give me info or point me in the right direction to look. His hematologist/oncologist is sending him to a cancer center in our state for a consult for a BMT. He is pretty stable right now, but in a lot of denial about this diagnosis. Any help is appreciated. Thank you!

[Neil Cuadra]

forevr30,

MDS is a disease where faulty stem cells in the bone marrow produce defective blood cells instead of normal blood cells. Patients can end up with insufficient red blood cells, white blood cells, and platelets.

RAEB-2 is one of the MDS classifications of the World Health Organization (WHO). The tell-tale signs of MDS/RAEB-2 are that there are many immature white blood cells called "blasts" in the bone marrow and in circulating blood, and abnormal chromosomes are found in an examination of the bone marrow. Doctors and researchers use these classifications for their statistics but what's most important for you is knowing what can be done to help your husband.

To learn about MDS and its treatments, I suggest that you ask for the free MDS information from the Aplastic Anemia & MDS International Foundation (AA&MDSIF), and that you download the Patient Handbook from the MDS Foundation.

You are also welcome to ask questions here.

[rose mcmillin]

Originally Posted by forevr30

Hi everyone! I am hoping to find some help here. My husband who is 62, was diagnosed this year with CMML-2. After a 2nd bone marrow biopsy, they changed his diagnosis to RAEB-2. I can find little information about RAEB-2 and am wondering if any of you can give me info or point me in the right direction to look. His hematologist/oncologist is sending him to a cancer center in our state for a consult for a BMT. He is pretty stable right now, but in a lot of denial about this diagnosis. Any help is appreciated. Thank you!

My husband has the same raeb-2 diagnosis. He has been on Vidaza for the past two years with good success. If you have any specific questions please don't hesitate to ask. Noting that the information on line is somewhat frightening. Much of it was written before Vidaza and things have improved. This disease is confusing because everyone seems to react differently. Just wanted to give you some hope. Sincerely, Rose

[forevr30]

Neil and Rose,
Thank you for answering my post. I can use all the hope I can get, and yes, the information out there is frightening! I signed up to receive the MDS Information from the AA & MDSIF. I have actually done a lot of research on MDS with my husbands prior diagnosis of CMML-2. I was just unfamiliar with the RAEB-2 diagnosis. Rose, I hope your husband continues to do well, adn I hope my husband does well also. Thank you both again.

[Debbie W]

A somewhat similar situation with my husband, he was diagnosed originally with 10% blasts at our local hospital. We brought the slides to Sloan Kettering who said the blast count was 15%, from reading I knew the percentage can vary, but we did not want to delay treatment. We had already contacted the NIH and they were all set to schedule an appointment for a complete review, my husband was hestitant about another BMB and also being further away from home. One thing comes back to give me pause, when I told the nurse at NIH that Sloan had read 15% blasts she said then that is AML, which did not fit into what is written. Normally what I had read was 20% blasts moves you into the category of AML. Wanting to get on with treatment and stay closer to home we opted to begin treatment and cancelled the appointment at the NIH, but I do wonder how if they would have treated the 15% blasts more aggressively??? Two course of Dacogen and blasts moved to 20%, so he just completed induction therapy for AML. Not sure how that helps at this point, other than to say another opinion with experts in the field might be worth the time and travel.

Wishing you well as I know it is a difficult time,

Debbie

[forevr30]

Debbie,
Thank you for the information. I do hope things turn around and begin to go well for your husband. It's just such a horrible disease and not a lot of good information out there. My husband has had 2 BMB. The first one came back CMML-2. We went to Karmanos Cancer Center in MI. The Dr. disagreed with the diagnosis and wanted another BMB. So, we had another one, with the slides being sent to U of M for analysis. Their diagnosis was RAEB-2. I can find very little info on this diagnosis. I also thought that blasts had to be at 20% for it to be AML. It's confusing. We have had 2 opinions and both ate basically the same. We go on Sept. 2 for a consult for a BMT. The doctors seem to feel this is the way to go. I am curious why you are not considering this, or have you? There is no rush to treat my husband right now according to the doctor, so no chemo or anything right now. I wish you and your husband all the best!

[Debbie W]

Thanks, there is some info out there, but much of it is bleak, although we have to always remember a good portion of that was before new advances in medicine. The docs recommended a BMT from the beginning and my husband has two siblings who are a match, but Sloan will not do a transplant until the blasts are below 5%, so that is the current fight.

I started his story in the thread below, he just underwent induction therapy after his blasts went from 10-15% to 20%.
http://forums.marrowforums.org/showthread.php?t=1480

A follow up BMB is scheduled for next week and if all looks good then we can meet with the transplant team. Glad to hear you have sought other opinions. It is confusing!

Keep in touch as we can all learn, and lean, on each other,

Debbie