[SusanJ]

Thanks Dennis,

My dad also has several abnormal chromosomes and all 3 lines are affected. However, he is not a candidate for a transplant. I guess the decision on whether or not to use Vidaza all boils down to buying time, right? I checked out your CaringBridge site, and you have a lovely family, and a lovely home. A normal life, if it wasn’t for the “MDS” monster, right? Seeing your site and all of the well wishes & prayers for you made me feel guilty for bothering you with my worries. You have a lot to deal with, and I am adding you to the top of my prayer list. I will check on you daily. God bless you!

Susan

[SusanJ]

Thanks Dennis,

What do you think would have happened if you had chosen not to take Vidaza? I wish you all the best on your transplant. I will pray for you daily!

[SusanJ]

Thanks Loretta,

Please, I want you to be “wordy”! I need all the advice that I can get! I don’t want my dad to feel bad, but I guess that’s unavoidable, right? He stays so tired all the time now, and I just dread seeing him go down even further if he starts this Vidaza. What do you think would happen if he chooses not to start Vidaza?

[SusanJ]

Loretta,

Congratulations to you! I am so happy to hear about your good results with Vidaza. My 73-year old dad was diagnosed with MDS in Jan. of this year and has been struggling with the decision of whether or not to start Vidaza. He has gotten conflicting advice on it from different doctors. Next week we are going to get our 3rd opinion on it, so hopefully then he can make a definite decision. I am always combing the forum for positive results from Vidaza. Please tell me how it has made you feel, give me the good and the bad. My dad has had 3 transfusions this year and all of his counts are low.

Thanks,
Susan

[SusanJ]

Thanks Shari & Gloria,

It’s good to hear success stories from Vidaza. It saddens me so to hear the unsuccessful ones. My dad has always had heart problems and I thought that would probably end up killing him, but I think I was wrong. I think it will be MDS. God bless you all.

[SusanJ]

Thanks to all of you for your information on Vidaza. Terri, I’m so sorry about your mother. My dad is my best friend and it is breaking my heart to see him go through this. He, like your mom, has always been so active, and now he gets so tired just walking from the bedroom to the kitchen. It makes him so mad! I do not know what to do about Vidaza, I know the decision ultimately will be his. I have a feeling that if he doesn’t try it, he will regret it. I am trying to give him as much information as I can get on it. Please keep helping me friends!

[SusanJ]

Barb,

I’m so sorry for your loss. Do you mind if I ask you a question? Did your husband’s kidney failure or other complications come from the use of Vidaza? My dad is trying to decide if he wants to start Vidaza and we need to weigh all of our options. I will keep you in my prayers.

Susan

[SusanJ]

Hello friends,

My dad has lost a little weight, but he eats like a horse! He has a very healthy appetite and eats a lot but never gains any weight. But he is always so tired and gets winded very easily.

[SusanJ]

Maureen,

Thanks for the info. Please keep me posted. I will pray for your dad. And for you!

[SusanJ]

Janice,

My dad doesn’t seem to perk up much after a transfusion. He has only had 2 so far. What is Dacogen?

[SusanJ]

Thanks Frankie & Dennis,

My dad’s doctor has told us that he didn’t think that Revlimid would help my dad because he has several other abnormal chromosomes beside the del 5q. We have gotten differing opinions from 2 hematologist/oncologists about the pros & cons of Vidaza. The most out-spoken doctor told us that he hasn’t had a very good success rate with Vidaza, especially in patients over 70. The other milder-mannered doctor has told us that if daddy doesn’t do something soon, he will be in trouble. He says that daddy will most likely have infections when he starts the Vidaza, because of the lowering of blood counts, but that he thinks he can get daddy through it. Daddy says that he feels okay, just gets really tired & winded when he does anything beside just sit, and the out-spoken doctor says why risk feeling worse after starting the Vidaza, in other words, if the disease isn’t curable and you feel okay now, why not just keep on the way things are now. He makes it sound like treatment with Vidaza is worse than the disease itself. The mild-mannered doctor is leaning more towards trying the Vidaza, but of course the ultimate decision is my dad’s. He is so confused. He wants to be able to do things again, he wants to be well. Dennis, I know that you’re 20 years younger than my dad, but did you get infections when you took Vidaza? Did your friend? Sorry I’m rambling on, I just need to gather all the information I can. I worry because his blood counts are already so low.

[SusanJ]

Terri,

I am praying for you and Bob. My daddy’s name is Bob! How is he doing today? Did the Vidaza cause his brain bleed? My dad is supposed to start Vidaza in another month. I know that there are risks involved with anything, we’re very scared.

Susan

[SusanJ]

Thanks Lynette and Eve, my dad is kind of tricky to deal with. He never calls me and tells me about the fever until after he has had it for awhile and it has gone down. He just cannot understand why he should call the doctor every time. I don’t think he has a clue yet how serious this is. He says after the fever goes down he feels okay. Don’t worry, the doctor will hear all about it tomorrow. I go to every visit! Thanks again for your advice, I take all I can get!

[SusanJ]

Lucy,

My dad also has fevers. He doesn’t have AML yet. His counts are WBC: 2.4, RBC: 3.4, and PLTS:34. We go to the doctor today so these could have changed. He had a bad case of phlebitis in his arms about 2 months ago and ran high fevers with that. He had to have 7 days of IV antibiotics for that. Now he has started running a fever just about every other day. It runs between 100.4-101.7. He takes 2 Tylenol and then usually doesn’t have fever any more for that day. All the tests for infections have been negative and urine tests are okay too. His last bone marrow biopsy showed 6% blasts. We are going to talk to the doctor today about starting Revlimid. I think if your mom wants to go home, she should be able to go. All of this is so hard to deal with. I will keep you and your mom in my prayers. Keep me posted. I am here for you.

Susan

[SusanJ]

Maueenh,

I am still relatively new to the forum myself, but I can tell you also that you are in the company of very good friends when you come here. I have gotten a lot of good information, advice, and support here. Dealing with this disease has knocked the wind out of me. Coming here gives me a sense of control when I seem to have no control over anything else. Just know that you are among friends and I have added you to my prayer list. If I can help you in any way, I will.

Susan

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