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I’m encouraged to hear of some that are doing on Vidaza because I’m sure hoping it will help me. I had to stop for a week after the first cycle because of low counts and an awful sore on the side of my tongue (ulcer). My family doc said it will prob take another week to heal. I sound like Donald Duck when I talk, trying to keep my tongue a certain way. I go back tomorrow to start shots again (if my counts look okay). I’m sure my platelets aren’t good because I have the petechaie all over again. Good luck to everyone on Vidaza.

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Hi Jim Bob, I’m so glad you are doing well. I remember how your encouraged me to get on this forum and I was so scared. Thanks for your encouragement and God bless you.

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Stephen, I’m sorry you feel so threatened with your news. I have gone through those feelings too with my secondary MDS, but you have to have faith. Our bodies are all different and I hate it when they put us in a catagory. I wasn’t suppose to live past year 2000 and now I have MDS in year 2005 but figure the Vidaza will keep me going. It’s hard but I live a very happy life no matter what and try to stay positive and strong. Of course I do have my weak moments. Keep your chin up and we’ll pray for something great to come along (you never know).

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Sandy, I never heard of Vidaza causing teeth to rot. I’ll have to check into that. I’ve had so many back teeth come out after I was on extensive chemo because of no saliva to clean the teeth.

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Terri, Thanks for the info. on Bob. I hope he continues to do well. It boggles my mind to see so many people with MDS. I’m glad to hear that Vidaza is helping some people.

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WOW Jules, that’s encouraging to hear how well you have done on Vidaza. I can’t believe you went through open heart surgery too. What a miracle. I won’t be starting my 2nd cycle of Vidaza until Oct. 6. I have been having platelet transfusions and red cells). I am feeling pretty good and hoping the Vidaza will help me live as normal a life as I can.

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Hi everyone, I had my last shot of Vidaza for the month yesterday. I could hardly walk on one leg for 3 days from 1 shot that gave me a lot of pain. My WBC was 2. and my HGB was 7.l and my platelets were 7,000. I got 2 units of red cells today, but my doctor called tonight and is concerned about my platelets and bleeding internally somewhere. I have to go in for another blood test tomorrow. He’s thinking of putting me in the hospital for platelets tx’s. I’m his first pt on Vidaza and he’s nervous. He’s working closely with Dr. Peter Curtin head of MDS Center at OHSU. I don’t know how many platelets I would have to have. Is Bob or Mike on any kind of medicines that’s suppose to keep them from getting mouth sores?

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Sandi,
I’m so sorry Mike had such a time with his first treatment of Vidaza. I have secondary MDS and started Vidaza Sept. 6. I’ve had 9 shots and have done well. I am taking a lower dose which was recommended but with good results (10 days instead of 7). I take Kytril pill before my shot and I’ve never been nauseous. My main problem is from the shot site and constipation. I get my last shot for the month on Monday and prob. a tx on Tuesday. My platelets were only 3,000. Yes, it’s great to have a doctor you trust.

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Paul, I’m so sorry to hear of your problems. I know it all so overwhelming and sometimes we don’t know where to turn.Hopefully you will have a good doctor you can trust in. I have secondary MDS and am trying the new drug Vidaza but haven’t been on it long. God bless you.

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Marie, I am fairly new to the forum and reading about your husband and son just breaks my heart. Your son is young and will have a much better chance. God bless you and keep you strong.

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Hi everyone, I’ve had just 4 shots of Vidaza and so far the injection sites are the worst problem, but I can deal with that. I start again tomorrow. I go 10 days instead of 7 at lower doses. I am on a small dose of steroids for 10 days to try and cut down on the inflammation sites. I’m like everyone else and hoping this new drug will work.

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Jimbob, Thanks for the advice. I see what you mean by so many helpful people. I get my shots at my oncologist’s office, not OHSU, but the doc. there keeps in contact with him all the time. I’m not afraid to ask questions anymore. I’ve been battling one health problem or another since ’95.

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Kathryn, Thanks for putting me in your prayers. This is my first time ever being involved in a forum and I can’t believe the people out there who are so helpful and caring. I think a positive attitude really helps. I’ve been told that’s one of the reasons I’m still here, plus the good Lord. I wasn’t expected to live at one point and He pulled me through. I’ve only had 3 Vidaza treatments and I feel okay, just reactions at the injection sites. Diner

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Harold, You’re the first one that mentioned low platelets too. My count the other day was 8,000, has been as low as 4,000. My doc. had the hospital hand count them and they came up with 24,000. Most of the platelets were so large that the machine wouldn’t recognize them. Have you had to have platelet transfusions since starting Vidaza. I just started the Vidaza Tuesday and the only side effect is large injection site swelling. The doctor is giving me a steroid for 10 days to see if it will help reduce the irritation. Diner

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Sarah,
I just had a reaction to a red cell transfusion a couple of weeks ago. Got chilled to the bone, fever, then sweats. I can’t take Benedryl. I’m allergic to it. Got through the reaction okay though. Deanna from Oregon

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