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katiebear
MemberJody,
Thank you for your response. I am slowly starting to understand the terms. The website Russ directed me to had a good glossary of terms which helped alot. My dad has one more day of Vidaza and then he is done until his biopsy. He felt awful last night. He is very tired, and I asked him if he rested and he said he refuses to give into it. I wish that he would just rest already. Anyway, thanks again for your help.
Katie
MemberRuss,
Thank you for the website. I’m going to try it right now. Thank you for the prayers, I’m praying too. How did the Vidaza work for you?
Katie
MemberHi Jody,
Thanks for the info. So if my Dad’s ratio is 4:1, is that bad? Common sense tells me it’s only one off, but you never know with this nightmare. The biopsy also shows hypercellular marrow at 70%, predominantly myelomonocytic precursors showing left-shifted maturation. His maturing cells show down-regulation of Cd10 and up regulation of HLA-DR. The first time he went to the onc. he didn’t tell anybody so I couldn’t ask anything. I suppose I should just wait until Sept. 6 when he goes again and I can go and ask, it’s just that all the waiting is very hard as everybody here must know.
Thanks very much,
Katie
MemberPatti,
Thanks for responding so fast. I really appreciate it. My dad has RAEB2. He will be 66 in October. He’s never had cancer before, so this isn’t secondary and that much I know makes it a little better if that’s possible. He also has no abnormal chromosomes. He’s in relatively good health other than he has a pacemaker which he’s had for six years. He’s being treated at Sloan and that’s a good place to be. I also know that my aunt is a perfect match in the event he can go that route. He started his 4th round of Vidaza on Thursday of last week and he has his next BMB Sept. 6th. He had no reaction the first 2 rounds, and they upped his dose the 3rd and 4th rounds and his counts went up a little bit as of last Monday. He’s happy about that. He’s had almost no side effects from the Vidaza other than fatigue which he had anyway and yesterday he complained of boil like lumps on his body. I’m glad he’s tolerating it well. He refuses to give into the fatigue and he won’t listen when I tell him to rest. He’s also not eating too much and I’m also on him for that. He’s probably tired of me, but I can’t help it. We lost my mom to lung cancer a little over two years ago and we are still struggling with that loss. The results of this BMB are all Greek to me. I guess none of this is easy and I don’t mean to complain. I have read alot of your postings and I admire you very much. Thanks for your help.
Katie
MemberMy dad completed his third round of Vidaza, and his numbers are still down. He starts the fourth next week and then goes for the bmb Sept. 6. Does this mean the Vidaza might not be working for him? It seems as though everybody else had a positive result prior to the fourth round. I know everybody reacts differently, especially with this disease, but the waiting is very hard. I know you guys have no answer, I guess I’m just frustrated.
Katie
MemberDennis,
Good luck and you will be in my prayers.
Katie
MemberHi Dennis,
Thank you for responding. I didn’t know at those ages it was possible. Everything I read seems to say otherwise. That gives me hope. I stopped at my dad’s yesterday, and I was talking about this with him. I asked him how many people his doctor performed this procedure on who had pacemakers. He said none. Then he laughed and said somebody has to be first. I’m glad he’s got a sense of humor still, but I’m still worried about that. I appreciate your responding to my post with some positive feedback. I will keep you in my prayers also. Katie
MemberHi Mike,
I’m sorry for what you’re going through. I’m not an experienced member of this forum, and I can’t really answer your questions. My dad was just diagnosed in March, and we just found out a couple of weeks ago as he kept it to himself, chemo and all. Since then I have been reading everything I can get my hands on. I don’t know what else to do. I did want to ask you a question though. My dad is going to Sloan, and you mentioned in your post that you’re not impressed by them. Can you tell me why? I always thought they were in the top. Again, I’m sorry for what you’re going through and I wish I could give you some advice, but I don’t know much about this disease. Take care, Katie
MemberEve, I’m in Riverhead, where are you?
Marla, Thank you very much for the info. I appreciate the way you explained it, as I’m sure you know, it’s hard to understand some of the medical terms associated with this nightmare. I just hope my dad reacts to the Vidaza. We just lost my mom to lung cancer two years ago, and we still haven’t gotten over that yet. I’m going over this weekend to see if he’ll let me see the results of his latest tests. I really appreciate you answereing me…………Katie
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