What to do now?

[Sandy L]

Mike needed 5 more units of platelets and 3 more units of blood, just three days after his last tx. His numbers dropped again – very low . He came home Sat morning from the hospital and he was very drained. This morning, Sunday, after his shower he was so tired and needed to lay down. The afternoon was better and he did feel a little stronger, but by 5:30 he was totally wiped out. Isn’t it strange? I thought he would feel better immediately. It looks like he is very white again tonight. We go to the hemo at 10 am tomorrow. He does not know what is happening. Is it normal to need so much blood after the Vidaza? Can someone tell me how they feel after the Vidaza and for what length of time? Where could the blood be going and so fast if he is not bleeding internally?
Thanks for all your help. I am very worried. Do you think the Vidaza is not working and that is why he needs so many txs? I know I have read that there are several people on this list that are tx dependent but I thought that meant once a month.

[Sandy L]

Hi it is me again.
Forgot to say that the root canal worked and has started to heal. The Miami doctor called and said they are cross typing 6 possible donor candidates . It looks like Mike has very common DNA.

[Terri]

Sandy, Sorry to Hear Mike’s number’s are so low.
The first time Bob started the vidaza, after three rounds Dr did not think it was working so he did a BMB and the blast were down. The blast were always the concern with Bob not so much the counts etc so I can’t really give you a definate answer. I do know he was getting transfusion up until Dec 2003 but the Diet and the vitamins did help. Actually when we get off the healthy diet and Bob does not take in as many fresh veggies and fruit I see a change in his numbers.
Hope things get better

[frank]

Sandy,

i got the same situation, but i didn’t get the blood tx untill 10 days over the drug. low PLT, low RBC and low WBC, the low WBC cause me an infection that stop me getting the drug again. so you have to be cautious, listen to the Dr., and sustain there, avoid infection. My counts are getting back after 1 months(start at may 25th, getting back arround after July). I was hospitalize during the infection and the drug reaction.

so take a good care, maybe delay the next treatment untill the counts back.

Frank

[lindajo]

Sandy, That much fatigue can go with MDS and may not be due to Vidaza. His rapidly falling counts may be an infection knocking down the cells. Since he just had a root canal that may be the case. Be sure and ask the hemo. Also check his temperature several times a day. a low grade fever or one that spikes is how I can tell if I have an infection.

Many who are transufion dependent get tx’s every 10 days to 2 weeks. There may not be any internal bleeding.

I can’t answer your questions about Vidaza but others on this site have said that initially blood counts may drop before they level off and improve. Keep a close eye on him. Be annoying with the doctor tomorrow if you have to.

[Sandy L]

Thank you everyone for your advice.

[JulesH]

Sandy L

I was TX dependent from July 2004 thru Nov 2004. About 50 units of blood during that time.

Started VIDAZA September 2004 and no TX since Dec. 2, 2004.

VIDAZA makes me tired even now with HGB 10.2, PLT 189 and WBC 12.03 until 10 days after treatment. Then I’m good for 25 days until my next treatment. I’m on 6 week cycles and soon going to 8.

[Sandy L]

Thank you everyone. I now have some new found hope. Maybe in a few months we can say that he is no longer tx dependant.

[sdrake]

Sandy,

My dad started Vidaza in February for CMML-1. His oncologist said that Dad would need at least 3 rounds before they would know if it was working. Dad was fortunate and there was improvement immediately. His wbc fell into the normal range, and his rbc and hemo went up. He got along well through 4 1/2 rounds of treatments until his ANC got too low, and they delayed the shots until it came back up. During this time his rbc and hemo dropped pretty low again although he didn’t get any tx – he had to be close. I was afraid that the Vidaza stopped working. They started him on a reduced dose of Vidaza after a delay of about 5 weeks. His numbers improved again. He has commmented that he has no energy at times but remains pretty active. From what I read, he has gotten along quite well with the treatments as they have not really made him sick or completely wiped him out. We just pray that things keep going well.

[Sandy L]

I hope that your Dad continues to keep doing well. I only hope that Mike will be able to be more active soon.

[diner]

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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