Vidaza treatments

[jeff b]

I have not been on Vidaza but reading this thread made me realize what a strange disease MDS is.
People with similar diagnosis but so many different treatments and responses.

I also have RAEB-1 dx 10/05, no chromosome abnormality, low with all cell types. Did well with weekly aranesp until last week when I had my first red cell tx. Originally the doc thought 18 months at the most for aranesp. I’m waiting on the bmb results from this week to determine the next course of action.

Jeff

[peggyp26]

Hello
I just found this forum and was glad to see posts on Vidaza. I completed my first round in June. I showed what I thought was amazing results except for a bad infection because of low WBC [.67]. Before Vidaza I was going every three days for transfusions of platelets and about every sixth day I needed blood. My platelets were as low as 1 and usually were around 6 or so on transfusion days. My latest bone biopsy showed that Vidaza killed off a lot of the bad…I just started cycle 2 today. I almost did not want to take it…you see my platelets are up to 149 and my HCT is hovering around 28. WBC is 4.7. YEAH!It has been 5 weeks since I have been transfused. I guess another round is supposed to make my results even better. I just hate the thought of dropping counts again. Sorry for rattling on but it is nice to be able to share my Vidaza news.
I am in the process of looking for a match for a BMT. Maybe this will buy me some time. A BMT really scares me.

DIAG:CMML in April of this year. DIAG: NHL in 1999.

[SusanJ]

Peggy,

I’m thrilled about your Vidaza results! Congratulations! Hearing news like this makes me optimistic about my dad’s option to take Vidaza.
I will keep you in my prayers. God Bless.

[maueenh]

SusanJ

My father is also having a good response from Vidaza. He is in the middle of his 3rd cycle right now. He has meds to treat the nausea and constipation and has figured out when to take both. Otherwise he is feeling good. We take one day at a time but atleast we are going in the right direction. My dad did experience a fall in counts after the first round and had to be tx both reds and platlets but has not had a tx since. He does not have a BMB until September so we do not know %blasts but again we are hopeful. As you know everyone responds differently but it does give hope. Have you considered Dacogen? Dad’s onc had mentioned that as an option but it had not arrived by mid June when my father began treatment.

Maureen

[SusanJ]

Thanks Maureen,

I’m so happy to hear that your dad is responding to Vidaza. It’s looking better and better to me. At first I just didn’t want anything that would possibly make my dad feel worse before he felt better, especially when this is not a “cure”. But so many of you have given me positive input on it’s use. Please keep encouraging me, I need it badly.

Susan

[franm]

Hi Maureen and Susan:

My husband Jim has been on Vidaza for 3 treatments…7 days each time and off for 3 weeks. The first time he had Vidaza he got an infection and had to go to the hospital for a week to be treated. He just finished his 3rd round and the doc. cut the dose after his first treatment 25%. He has been feeling OK, since she cut the dose. He does have pain and soreness in his stomach, becuae that is where they give him the shots.

Since I had to go into the hospital for surgery on Thursday and he took me, he has been really tired but his BT were not bad. I had to stay over-night becuase I had a new lead put into my pacemaker and they wanted to make sure it would stay this time. I feel ok but tired also. Didn’t sleep much in the hospital.

Fran

[peggyp26]

Hi Franm

I have had the same results with my Vidaza treatment. After my first round [7 days of 2 shots and 3 weeks off] I also got a bad infection and was in the hospital for 10 days. After I got home I was on 4 different antibiotics and IV therapy for three weeks which delayed my starting the second round of Vidaza. This cycle my doctor has also cut back on the Vidaza by 25%. My shots are in my arm, stomach and legs. It can get pretty sore. Glad to hear that your husband is doing better.
Good news. Had my CBC today and my counts are still going up. In 3 days my WBC has gone from 4.7 to 9.6 and my platelets from 143 to 159.
Thank to all for sharing all your personal results with this drug.
God Bless

[Terri]

Loretta, They tried the stretch of time for Bob too, unfortunately for him he needs the closer schedule. They started seeing abnormal cells on the Smears the Dr office did after a few treatments with the extra time in between. But everyone is different It could work for you. We are waiting to see if the FDA approves it for IV administration, he is running out of places for all of these shots two years of 14 shots a month he is so bruised.

[franm]

Hi Terri:

Jim has been getting his shots in his stomach and now it is so sore and really puffy but I can’t tell him to let the Oncologist know about this because he just won’t tell her anything. He just says I am fine. At least he doesn’t have to go through the Vidaza until the 31st of this month. That will be his 4th round and I hope things stay good.

Fran

[Engel]

Dear Fran,
My husband gets his shots of Vidaza in the stomach and it to like Jims is very sore, he says it is worse in the arm. I know your husband has had good results we had two rounds sofar and we will see the results on Monday. I always get scared when I see his counts, never know what to expect. Sending prayers and blessings. Gloria

[Author]

Posts