DIAGNOSED WITH MDS IN 4/10.

[simplistic007]

Hello,
I was diagnosed with MDS in April, 2010. Just had a bone marrow re-biopsy which will determine if I will or will not need Allogeneic Transplasntation. I am 43 years old. Any insight on this type of transplantation or any words of advice for me to cope with this. I am very scared. Thank you. Simplistic007

[Zoe]

Simplistic, First, just breathe. Then try to take one step at a time. I know, easier said than done, but worry and fear will not add one positive thing to your life.

Do you know what type of MDS you have? Who is you Doctor? How are you feeling physically? Are your counts changing? Is that why the second biopsy? Any info you can share will help people answer your questions. This forum has a great group of supportive and knowledgeable people.

I am glad you found us.

Zoe

[Mary4Mike]

Welcome Simplistic!
Please give a little more info on the status of you MDS so that we can answer your questions. As I am sure you know, a transplant is the only cure for MDS. The fact that they are suggesting transplant right away could be because your bone marrow is changing quickly, or because of your age (young) and physical strength, also the fact that you have not under gone any chemo treatments yet to further damage chromosomes. Please keep us updated on your treatment. We will be here to answer your questions. What hospital are you working with……Moffitt in Tampa?

As you can see by my signature, my husband had a transplant September 30, 2009 and is doing very well. We are forever grateful for this gift of life.

Keep asking questions. We are here for you.

Mary

[simplistic007]

Wow, thank you for replying. I had the 2nd biopsy because they want to check if my blasts have changed since my last biopsy in Feb. I get my results on Aug 26th. I will know if I will need to go through the transplant or not. As far as i know, I have been diagnosed with Myelodysplastic Syndrome and I am at 5% blasts. They are checking to see if any changes have ocurred. The only reason I found out I had MDS was because I am a breast cancer Stage I survivor, no chemo just radiation and when I went to see the Oncologists, I was diagnosed with refractory anemia and I get tired easily. I have not had any need for blood transfusion just low levels on wbc, platelets and anemic. I am going to Moffit. What do you think of Moffit in Tampa, FL. What I know today is that if I have had changes in the bone marrow to increase blasts I will need Allogeneic Transplantation and be in the hospital 3 weeks and 3 months and 1 weeks in a nearby room (10 mins. from hospital) with a 24 caretaker. Thank you I am getting very nervous.

[simplistic007]

In addendum to the note I just posted, this was my exact reading on my 1st bone marrow biopsy. CD34 positive blasts (up to 5%) and presence of abnormal clonal population detected by karyotyping t(9:11). Bone marrow cell clot and core essentially nomocellular marrow (40% in cell clot estimated) with trilineage hematopoiesis and focal increase in CD34 positive blasts. abnormal 46.xx.t(9:11) (p22:q23) (5)/46, xx(13)

[Mary4Mike]

We have not had any experience with Moffit, however, Dr. Alan List is always mentioned about his work with Revlimed, a drug that some MDS patients have had luck with. An increase in blasts is an indication that the disease is progressing toward leukemia. Have any of your family members been tested for donating yet? This is a scary time for you, especially since you were so recently diagnosed and now they are talking transplant. This is where we were a year ago. Thank God, you only have to do this a day at a time. These transplant centers have wonderful support systems and easy access to information. We can email our doctor at any time and usually have a reply in a matter of minutes. Believe me when I say that they want the best outcome for you.
Keep us up on what is happening and if you have questions, please ask!

Mary

[simplistic007]

Thank you so much Mary for your support. I really appreciate it. I am at a lost with this. I have yet a lot to learn. Did your husband have transplant or did they did treat it with oral medication? If he had transplantation, how is he doing today. How was the process? Any input from you is greatly appreciated. Once again, thank you. 🙂

[Mary4Mike]

My husband had a transplant at the U of M hospital in Ann Arbor on September 30, 2009. He is doing great. The whole process was a breeze for him, however, it is different for everyone. He had low intensity pre-chemo and no radiation. He came home 12 days after transplant. His sister was a perfect match and this helps toward a better success. He is in sales and took calls the whole time he was in the hospital. At first, you have to be very careful of germs, so of course, you don’t get out much, but then again you will need to regain your strength. That is a long process and he still gets tired sometimes, but then we all do. There are issues of graft versus host that will all be explained to you. Read everything they give you to read. Ask all the questions you to need to ask, but once you make up your mind, don’t read everything on the internet. Move forward with your decision, whatever it is, and put it in God’s hands. That is what we did. The doctors will do all they can do, but when all is said and done, the Lord is the ultimate healer.

Keep asking!
Mary

[simplistic007]

Wow, Mary, you have no idea how much better you make me feel. Your words and explanation are soothing to me. You are correct, the ultimate decision is in God’s hand and I am leaving it all to God to take care of me. Thank you so much. I feel so much better. I really appreciate everyone’s support. God Bless You and your husband and family. 🙂

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