Newly Diagnosed

[courtney]

I was diagnosed at the end of January with MDS with refractory anemia. I guess this is the mildest form and I'd like to hear from others who have it. Did you need treatment? Were you just monitored? What led to your diagnosis? How are you faring? I've had 3 injections of Procrit; my levels have come up somewhat but the hematologist says they will go down again.
Thank you in advance for any information. I'm the type who likes to know as much as possible.

[Ruth Cuadra]

Hi, Courtney.

Welcome to Marrowforums. As you read through the threads in the MDS forum, you'll get some feeling for the experiences people have with MDS. A good thing to do when you're getting started learning about MDS is to contact the Aplastic Anemia & MDS International Foundation to request their information packet on MDS. The Basic Explanations booklet in that packet covers all the basic terms and gives a good overview of what MDS is about and how it can be treated.

When I was diagnosed with MDS in 1998 it was following treatment for what had earlier been diagnosed as aplastic anemia. At that time there were no drug options for MDS, so I had a bone marrow transplant. Though it wasn't much fun, I survived and have been fortunate to have few long-term side effects.

People's experience with MDS varies widely. You're right that MDS/RA is the "mildest" form or the form with the lowest risk of transforming to leukemia. It's possible to live for quite a long time with little or no treatment if your counts are stable and, with drug treatments available today, more serious forms of MDS can be treated effectively.

The results of your bone marrow biopsy give the best indication of the status of your disease. Do you know if the test showed chromosome abnormalities? If so, do you know which ones?

Feel free to post your questions here or in the MDS forum and we'll all do our best to help you learn.

Regards,
Ruth Cuadra

[Zoe's Life]

Courtney,

Welcome, I am glad you found us.

Like you I have a mild form of MDS. Mine is known as 5q- meaning that part of the long arm of chromosome 5 is missing in most of my cells. I have been on Aranesp for a year now. My hgb hovers just below normal, and is holding steady.

I was diagnosed because I had an unexpalained anemia, so I was sent to a hematologist who diagnosed me with a bone marrow biopsy. Other than twice a month visits to the local hospital for my injections, I am fine.

Really, the most difficult aspects for me have been the emotional adjustment to having a serious disease, and dealing with the expense of the Aranesp.

Feel free to ask anything. I am sure someone can help.

Zoe

[courtney]

I'm going to the Moffitt Cancer Center In Tampa, FL later this week where they have an MDS Research Group. I know I'll receive good advice and information there. But, I wonder if, since I only have MDS with refractory anemia, I'm making too big deal of the diagnosis. Has anyone with this diagnosis felt similarly? I know many patients are coping with a lot more. Thanks.

[flowerlady]

Hi Courtney,

I know very much how you feel. I have a similar diagnosis but, I also have the 5q-. I was diagnosed in July of last year and still keep trying to figure out how I am supposed to feel emotionally. It is just plain frightening to try and comprehend the full picture of MDS when it is so new to us. Try to learn as much as you can and remember that much of the information on the internet is dated...with new treatments becomng available so quickly there is much new hope for treatment today and so much more than there was even 2 years ago. Mostly, I count my blessings and try very hard not to let the MDS become my life. Much easier some days than others but, knowing you will be at Moffitt you should feel you are in good hands. I see Dr. List at Moffitt and a Dr. here where I live as well. Don't be afraid to discuss your feelings with your Doctor or Nurse. There is also an unbelievable amount of support right here that may give you some comfort. Sending you blessings.

Sunny Regards,
Flowerlady






Flowerlady