[doreen]

First of all Kathryn, thank you for thinking of me and Suzanne for your support and knowledge and for everyone for all their good wishes and prayers. I was done with my chemo on Wedesday. The week went by so easily so they sent me home on Thursday. By the time I got home on thursday, that night I was so sick with a fever and stomach cramps. I went in early on Friday morning with my blood tests and they re-admitted me. I felt so terrible. They hooked me up to antibiotics and its now Sunday and I am starting to finally feel like myself. My white count is only .4 so they want to keep me on antibiotics until that goes up. I hope that does not take another 2 weeks??!! any one know? I know it varies with everyone but I want to go back home so bad. Thoughts of you call and hoping this finds you happy and well. Doreen

[doreen]

I have 2 more nights of the ARA-C. It is with me day and night. I try to think of it as my friend and envision it killing the bad cells. All of you are so supportive and such unselfish people. Thank you so much for your support. I will let you know how I do. You are all so so special.

[doreen]

Bill – I am happy the results came back not showing AML and that they have a perfect match. You are very fortunate to have common tissue type. I am beginning to wonder where I really came from?? I begin my chemo treatment on Wednesday to get the 6% blasts down to 0 so that the U of MN will do a cord blood transplant on me. Since they will only do a mini and not a full, the chemo will need to be done here first. Does not make much sense to me at all but I am not in a position to question why at this time. I will be keeping track of your progress in the road to recovery. Best of luck to you and Mary

[doreen]

Butch. I am so very sorry. Please accept my prayers for you and your daughters that they may bring you some peace.

[doreen]

Frank… I hate this disease and hate what it is doing to everyone. Did the dr. say why an unrelated match would not be good for you? Sounds like you are going to John Hopkins and I always hear such good things about them but I think a 2nd opinion is always good. The mayo Clinic here in Rochester could not offer me anything for the MDS but a bone marrow but were unable to find a match for me. My brother was not a match and they were unable to find a good unrelated match for me. I looked seriously into cord blood by the suggestion of the my doctor here at Mayo (they do not offer it, however) and from everything I see, it looks very very promising. I agree with you about not wanting to just wait and see, it is so hard every day to wonder and worry. I know exactly how you are feeling. I do wish you the best and keep looking until you are happy with what your decision is.

[doreen]

Hello. If I learn anything from this disease it will be to be flexible. There have been so many set backs with me and consider this something that will work out the best for you Bill. I dont think they can really tell you about the blasts unless they do a bmb? My doctor told me that they have to be 20 percent to be AML. Mine were 6.78 percent. Last year at this time they were 3 percent. We really cannot determine how fast it turns to AML but I determined that I don’t want to wait to find out either. I hope the BMB gives you some good news and maybe you can go back out in your motorhome and enjoy some more time off. You both take care and don’t worry, it will all work out. I’ll say a prayer for you Bill.

[doreen]

Jim,
Thank you for your kind reply and your prayers. I also wanted to try and beat this thing with exercise, healthy diet, etc. but I don’t think its going to work. I guess that is why we have such good doctors this day and age. I certainly appreciate your support and everyones here.
I wish you all the very best in the future. I’ll stay in touch for sure. Doreen

[doreen]

First of all, you are all so very wonderful. I cannot imagine what people did without this technology of the computer and having a support group so close at hand. I just returned from the dr. appt. Here is what I learned and of course this is a decision that I had to make. When I went in a year ago, my blasts were at 3 percent, they are now at 6 percent. My counts have remained pretty steady except for my platelets were went down to 22,000 in January. They are now at a whopping 27,000! I feel physically healthy but we all know that is the mystery of MDS. My cord blood transplant cannot be done with blasts over 5 percent and that is because they will not do anything but a mini on me (over the age of 45). I think this is the way they keep their stats on success rate is. Therefore, after talking to my doctor I can- a) wait and see but I gathered from him not a good option as he is not GOD and cannot give any guarantees or keep with the plan of the cord blood. This will require me to be admitted on Monday for he said 4 weeks of inpatient care and chemo to get my blasts down to a level where I can then go up to the U of MN to get the cordblood done. I talked to my 19 year old son.. discussed with him my options.. I can wait and see with this disease but he said, MOM, get it taken care of now. That decided for me. I agree with him. If it can cure me or give me more years, I am going to go with it. The dr. here does not think I will have a problem with the chemo. He is so kind because at the end, there was one thing he hated to tell me and that was that I would lose my hair.. I almost laughed because I so knew that! I have been trying to talk friends into shaving it for me but no one will do it! After talking with him, I felt some hope, I know my summer is shot but that is trivial to my life right now. by the way.. I alway have a caring page website. I want you all to know it as I start to depend on you. Barbara and Susanne, I especially appreciate all your kind words and rough times you have been through and I am sorry. I wish that no one on earth has to go through anything like this. You are very strong women and I admire you so much. My caring page is http://www.caringbridge.org/mn/sadieflowers/. I will keep in touch with all of you during this summer and wish you all many smiles and much happiness and good health!

[doreen]

Lola, You are such a fighter. I am not sure how much the typing costs but there may be grants that help cover the cost. Someone more knowledge on this may know more. They initially told me that they would not cover my typing but did anyway. I wish you the best, this disease is not an easy one to deal with emotionally.
best regards, Doreen

[doreen]

Butch,
She must be very lucky to have you in her life. She also must be a fighter!. Please keep us informed, it really sounds like the worse is behind her. I also was diagnosed a year ago and am waiting for a transplant. Best of luck to both you, I always believe that prayers help and will say them for you and your wife also.

[doreen]

Suzanne, Can you explain your last statement a bit more. What do you mean by 20%? All of this information is so overwhelming to me. What type of treatment responds better to MDS over 20%. I wish I could been able to go to that conference that you went to. Thank you for sharing that information with all of us. Regards, Doreen

[doreen]

Does anyone know if Vidaza bring the blasts down to a Normal level or is Chemo the only thing that can do that.?

[doreen]

Well here is the news.. My blast were at 6 and they cannot do a cordblood unless they are at less than 5 or they feel that you will relapse. Soo…..I need to come back to my primary care doctor here in Rochester to get some good chemo treatments to get me in remission. Not good news but not bad. I will just need to get this nasty mds in remission before I can go ahead with this. What does not kill you makes you stronger I keep saying. I will get through this one way or another. Thanks again for all your support. Love you all… Doreen

[doreen]

Heading to bed now and hopes that tomorrow will provide some good insight as to what can be done. Thank you all… Without this website I do not know where I would be. You are all angels. Peace, health and prayers to you. Doreen

[doreen]

They did not say but they did say that they were more than 5 Percent which is not acceptable for a cord blood. I am just at a loss right now.

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