[Christina]

Kel,

My dad is taking Zofran with the Vidaza. Has your dad been taking an anitnausea med?

Believe me I know your parents can be stubborn just stay strong and insist! He’s not at a point were you would say “OK it’s his choice” you can fix the nausea.

Let us know how he’s doing>

[Christina]

Hi Helen

My dad just finished his fourth round of Vidaza and it was a bad experience. He ended up in the hospital for 2 weeks. His wbc went to .6 and he recieved 8 units of blood in 10 days! I thought he might have been bleeding internally – that was so much blood to recieve in a short time. The doctors felt it was possible that the virus he had messed up his bonemarrow as well – they are just guessing. I felt strongly we weren’t going to do the Vidaza again because his numbers are going so low it is damaging. His Dr. from Sloan and his hemo. Dr are going to discuss it and give us their opinion this week. Is your husband going to continue the Vidaza?

[Christina]

Hi Carrie;
One of your questions was when to expect the counts to drop. They begin to fall around day fourteen – counting from the day of the first injection. I keep a running tab on my dads counts and his meds and injections. You can track what will happen after awhile – I’ve even been able to figure out when his numbers will begin to rise. Unfortuately he just received 8 units of blood this week – I hope he’s on the upswing – we’re waiting to hear from his doctor. Hopefully all will be ok soon and he can leave the hospital. I hope your dad is successufl with the Vidaza!!
Keep me posted – Christina
____________________________________________
Dad,67 – dx 2/03 MDS-RARS, procrit/ 1 year thalidomide/ now 4 rounds vidaza/ currently in hospital-hopefully not for long!

[Christina]

Hi Helen;
My dad, Lou – 67 has just finished his 4th cycle of vidaza. We’ve been through the mill as you and your husband. How low were your husbands numbers? My dad has been in the hospital now over 1 week. Started with 104 fever, infection, he’s on antibiotics. His wbc was at .6 it took a week to come up. Finally it’s up to 2.7 his hgb was at 7.2 he has had 8 units of blood in one week!! That was so scary to me…I was wondereing if he was bleeding internally. His platlets are finally coming up. But I’ve been asking the same question…how long do we do this? The hemotologist said it’s up to the family to decide. I thought that was a bogus answer. I spoke with our doctor at Sloan Kettering – although it really was the nurse I spoke to – hard to get these dr.s on the phone. She said usually you go 6 rounds. As soon as he is out of the hospital we will go to sloan to see what the mds expert has to say. I hate to see him go through this, and it seems to get worse each month. But it will be his decision with the doctors advise if we should continue a few more months or try something else. He has also been on thalidomide – 1 year, and is still on procrit. What dose is your husband on? I would like to compare it to my fathers…I will find out his dose. I thought they go according to weight…did you find that as well?
Christina

[Christina]

You and your family will be in my prayers. I am so sorry there was nothing more to do.
Christina

[Christina]

Hi Carrie-
How long after the injections was he feeling this way? It usually hits my dad 14 days later when all of his blood counts drop. I am sure they are checking his numbers once a week, right? Having a very low hgb would make him pale, tired and weak. Please let me know how it’s going. My dad is still in the hospial since 1/1. We are awaiting an mri of his lung. His numbers have come up – but it took 8 units of blood! Chris
_______________________________________________
Dad,67. dx 2/03 RARS/ procrit/ thaolidomide 1 year/ now 4 cycles of vidaza.

[Christina]

Thanks to everyone! I will keep you all updated and look for yours as well!
Christina

[Christina]

Hi Kate – What were Georges numbers today? When you said his hmg was 6 is it 6.0 or o.6. Same for the platlets were they 6 or 6K(thousand)? My mom has been with my dad because my brother and I have been sick so we are not allowed to go visit him. This makes me feel even worse although I know we can’t! My mother has been trying to act strong but every so often breaks down to me. I am not sure what to say either – we can only pray and be there for each other. I’ll look for your update later on!! Christina

[Christina]

Thanks for your replies – I will be speaking to Sloan on Mon. and I also thought of internal bleeding. I’ll mention it to the Drs.
Kate my dad is receiving his 8th unit of blood this week, George had 7? Has George ever needed that much blood in such a short period or do you think its the Vidaza? Did his hgb finally stabalize? I am glad to hear he is feeling better. Keep us posted! Chris

[Christina]

Hi Jocelyn – we are hanging in there. My dad has been in the hospital since New Years. We feel so helpless and just want to help. I am going to speak with the Doctors myself on Monday…hopefully they call me back! We all have to stay positve and strong. I do believe that attitude has a lot to do with everything!
Thanks for asking!
Christina

[Christina]

Congratulations Terri and Bob! It’s so nice to read some good news on the post. All the best to your family!
Christina
_________________________________________________
Dad,Lou, dx RARS 2003, thalidomide 1 yr, 4 cycles of vidaza – not sure what future care will be.

[Christina]

Let us know how your appointment goes…we’re praying for you!
Christina

[Christina]

Hi Kate;
Sorry to hear George is in the hospital, my dad has been in he hospital since New Years day. My dad had 104 fever, his counts are very very low and taking sooo long to budge. This all came about after the 4th round of Vidaza, during the 14 day low period. They have had to tx 6 units of blood in 5 days, and the Neupogen has not helped his white count come up yet. I hope George and my dad are up and out soon!!
Chris

[Christina]

Hi Jocelyn…have you conferred with your doctor on this? There could be many reasons this is happening, for instance many medications can cause this reaction. You really need to speak to your dr…do you have one from a center of excellence?

[Christina]

Hi and thanks to all who responded!
B.Greene, yes my dad was in for more than low counts, he had 104 fever for 2 1/2 days and over the next several days it went down…now to 98. His lung scan showed a small spot but because his wbc is .8 they cannot do a scope. You all are talking about getting the shake and bakes…what do you mean? Just getting the shakes?
Shirlsgirl…did your mom have a fever with that too?
Debe…glad to hear your mom went home, she must be glad too. What are they doing for her low wbc? They are giving my dad neupogen, although three days later and the number is not budging yet…hopefully tomorrow!
Suzanne-what meds did you get for the infection and how long until it disappeared?
Thanks!! Chris

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