[simplistic007]

Mary, thank you so much for your advice. I really appreciate it. Did I mention that Moffit called me and stated that they have an almost perfect match. Should I be concerned with an almost perfect match? Is there such thing as a perfect match? I have no siblings so they have to find a donor. 🙂

[simplistic007]

Mary Moffitt called me and told me that they found a match. When I asked if it was a perfect match, they stated almost a perfect match. Do you know if I should insist on a perfect match. I have no siblings so I have to wait for a donor. But I really hope for a perfect match not an almost perfect match or is it that they refer to it as an almost perfect match to not say perfect match because nothing is perfect. Any light on this, I would greatly appreciated. Thank you.

[simplistic007]

I am very sorry to hear about your husband. I was just diagnosed with MDS in April, 2010. I have an appt. next week to find out if I am going to have to go through allogeneic transplantation. I am confused, scared and can’t wait for next week so I know where I stand. There are a lot of knowledgeable people on this forum and with transplantation experience. I am sure someone will give you some answers to your concerns and be there for you. Please keep us posted. God Bless you and your family.

[simplistic007]

Esther, you are amazing. Your words are so powerful and healing. I am a 43 year old mom. My son is aware of what is going on, and we talk about it freely. I found next week, 8/26th if I need the allogeneic transplantation or not. We shall see what happens. I will leave it in the hands of God. Your daughter sounded like a wonderful woman, and her daughter is amazing too to be able to cope with the loss of her mother at a young age. I had a boyfriend up until a month ago. After a year of being together, he decided not to stick by me through my possible transplantation. He copped out on me and completely shut me out of his life. We broke up July 11th and I have never heard from him again. This is the least of my problems, so I have moved on and I am concentrating on my health. I cannot worry about someone that no longer wanted to be with me because of my MDS. My son, on the other hand, has most supportive. He is always asking me and concerned and gives his 100% support. I am lucky to have a son like him,and I tell him every day. We are very close. Again, thank you for your time and support. I know you have a lot on your plate and my problems are small compared to the pain and grieve you are growing through. God Bless you and let’s stay in touch.

[simplistic007]

May God always be with you. Thank you for the update. God Bless.

[simplistic007]

Esther,first and fair most important you have my condolense and my thought and prayers are with you. I truly appreciate your time and telling me this personal story. You do not have to apologize for not responding sooner as If I was in your shoes, I could not even think of answering this personal and delicate questions after losing a child. I have one son and he is 22 years old and he is my life. I raised all by myself and we are extremely close. I can only imagine your pain. what worries me most of all this entire process is my son. I say, I can handle whatever comes to me, but I worry about my son. I don’t this he is ready to lose a mother. He is 22 but 22 years old is still very young and we all need a mother regardless of our age. I appreciate your time and explanation of this whole process. Once again, thank you for your kind time. I would have lots of questions about what happened myself. It sounds very puzzling. Thank you for your time and I will keep you posted. I know that God will do what he has to do and he will not leave my side. The ultimate outcome will be in God’s hands. Thank you.

[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. 🙂

[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. 🙂

[simplistic007]

Renee,

I am very sorry to hear about your daughter’s passing. If you donh’t mind, sharing what happened with her transplant. What went wrong and what type of transplant was she getting. I was just diagnosed with beginning stages of MDS and Allogeneic transplantation may be my next step in the Fall. Any input is greatly appreciated. I am 43 years old and have a 22 year old only son who is my world. I have great family support and don’t feel ready to leave this world yet. Any input is greatly appreciated. God be with you and comfort you and give you strength throughout this time. God Bless.

Thank you,
simplistic007

[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)

[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.

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