[katiebear]

Hi Mike,

I could use a few success stories too. My dad is going into Sloan on the 23rd of this month for a SCT. Good luck to you.

Katie

[katiebear]

You are a very strong woman, Sandy. My heart goes out to you. You and your family will remain in my prayers.

[katiebear]

Sandy,

I’m so sorry to hear the news. I don’t know what to say. My prayers are with you.

Katie

[katiebear]

Hi Sandy,

If you go to Sloankettering.com, and go to the top right there is a spot where you can search for a doctor. She is in there under J with a phone number.

So far it’s been a long wait. My dad has RAEB2. No chromosome abnormalities, thank God. He was diagnosed in March of this year. His sister is his donor. He was initially scheduled to go in sometime in October, but he didn’t have his affairs in order, so they allowed him to postpone it until November 19th. My Aunt started to undergo her tests, and they found toxemia in her blood, so it was put off again in order for her to build up antibodies. Just last week her test came back okay, so they scheduled him for January 18th. He has been on Vidaza since April with good results. The side effects don’t seem to bother him much. He’s lucky that way. Yesterday he got his cbc and his whites are very low and he needed a shot of Neupogen, and he has to go back again today and get another cbc done. I hope his counts hold and everything is okay until the transplant.

He also had a very hard time finding housing. There are a number of places that do provide free or very low cost housing, I could dig those numbers out if you’re interested.

We are really scared. He has a pacemaker, and this is the first transplant the doctor has done on somebody with one. I hope I answered your questions. I will keep praying.

Katie

[katiebear]

Hi Sandy,

I live on Long Island, and my dad is scheduled to undergo a transplant at Sloan on January 18th. His doctor is Ann Jakubowski. I hope this helps if you decide to go there. I will be praying.

Katie

[katiebear]

Loretta,

Thanks for your response and your prayers. They are greatly appreciated. This is such an unfair disease.

Katie

[katiebear]

I’m sorry for your bad news, Loretta. I don’t post much but I read this forum everyday, and I feel awful. My dad is currently doing the Vidaza thing. He is supposed to be getting a SCT some time in the future. His sister is a perfect match for him, but it’s been delayed because she needs to build up antibodies as a result of having some sort of toxemia. He was supposed to go in November 20th, but that didn’t happen. I’m very worried that he will stop responding to the Vidaza before he actually gets to the transplant point. He just started his 8th round this past Monday. Before they tested you, did you have a clue that it stopped working? My dad mentioned to me on Tuesday after his CBC that his counts have ever so slowly been dropping, although he feels okay. You will be in my thoughts and prayers.

Katie

[katiebear]

Pierre,

That is wonderful news. My dad is going to Sloan on the 19th of this month for his SCT. This kind of news gives us great hope. Where did your mom get hers done?

Katie

[katiebear]

KWJ, my dad is going to Sloan on the 19th of this month for a mini transplant. I am also very fearful. They are going to use a combination of three chemo drugs that have never been used before. His doctor seems pretty confident, but we are all still terrified. I will keep you and your dad in my prayers. Good luck to you.

Katie

[katiebear]

Okay, I guess I spoke too soon. As I was making my post yesterday my dad was at Sloan telling them that he wasn’t going to do it. Well, he called on the way home, and I guess his doctor urged him, because now he is going to do it. She must of put alot of his fears to rest yesterday. He’s afraid of the chemo. They are using a combination of 3 drugs that have never been used before together which is his main fear I think. They wanted to do it the 16th of this month but he got them to push it back to sometime in November.

Pierre, how old is your mom? My dad will be 66 this month. He’s pretty lucky, because he hasn’t gotten any infections, and he feels generally pretty good. Thank you for responding. I really appreciate the support.

[katiebear]

This is so heart breaking. I have been following this closely and praying. My dad is going to undergo a mini sct and I am terrified also. He is going to Sloan today for his Psychiatric evaluation. I am praying for a miracle also. I don’t know what else to say. I don’t think there are any words.

[katiebear]

Lucy,

I’m sorry, I can’t offer any input as I am fairly new at this. I just wanted to say you guys are in my prayers.

Katie

[katiebear]

Jen,

My dad was diagnosed with RAEB2 in March of this year. He just completed his 4th round of Vidaza this past Weds. He goes back to Sloan on Sept. 6th for his BMB. His doc is hoping to get his blasts down with the Vidaza so he can have a mini transplant. My aunt is a 10/10 match. He will be 66 in Oct. Everyday I read about this disease and try to learn more. I don’t have the knowledge most of the other members have on this forum, but I wanted you to know that you’re not alone.

Katie

[katiebear]

Maureen,

My dad just finished his 4th round today, and his BMB is scheduled for Sept. 6th. The waiting is very hard. His counts went up a tiny bit last week and as of Monday of this week they were down again. I keep thinking what does that mean, and does it mean it’s not working. Are your dad’s counts up consistantly? I know everybody is different, I’m just curious. Russ, I think my dad is on Prednasone. Thanks for the info, and I am still praying.

Katie

[katiebear]

Susi,

I really can’t help, but I know exactly how you feel. I just read my dad’s BMB last weekend, and I felt exactly the same as you. It’s very overwhelming. I do know my dad’s diagnosis is RAEB2. His byopsy is very different from your dad’s. I’m sorry I can’t help, but I wanted to tell you that you’re not alone.

Katie

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