Myelodysplasia Support Group

I am on the vidaza drip. I decided to do that instead of the injections. The nurse told me I made a good choice. She said a lot of poeple have a reaction at the injection site with the shots. Which means you could have 7 different reactions. Hope this helps.

Thank you for your input. Do you take Procrit too or is the Vidaza in place of Procrit?

No I am only on the vidaza. The vidaza did cause me to vomit though. Most people don't get sick on it, but I did. I get (I can't remember the name of the drug) before the vidaza once every three days through the drip. Since then I really don't have any nausea. I hope he is feeling better. I know how hard all of this can be. My thoughts an prayers are with you.

Hi Cat,
Well Joe had his 1st Vidaza drip today and so far so good. He will get this 5 days in a row and then be off 4 - 6 weeks depending on his blood levels. But our hema said Procrit will also be given and transfusions if needed. What do I know! I just want him to feel better. He is just so tired all the time.

Millie

What is his Hgb? When I was winded and tired I had a blood transfusion and felt so much better. My Hgb only went up to 8.8. But that was so much higher than before the transfusion I felt great. I am starting to get a little winded and tired again. I start today on my second round of vidaza so I will get another blood test. Will find out again about my counts. I also know I am tired cause I don't do very much any more. I have to try and just move around more. A body in motion and all that...
My mom went through this with my father. We talked a lot about how hard it is for the caregivers before I got sick. My husband has been my champion through out this. I am sure you know about this site but I will give it to you anyway.
http://www.mds-foundation.org/ If you email them they will send via mail a lot of great information.
Cat

Hi Cat,
Joe had a transfusion (2 units) on 12/23. At that point Hgb was 8.5. Count yesterday was 9.5. He was an exercise enthusiast but now his exercise is walking from the recliner to bed. I think he really needs to get moving but he says he is too exhausted. I think we missed the boat when Revlimid was offered 6 months ago. He turned it down. We did not realize how serious this disease is. Dr. says that is more of an interim med and now Vidaza is what he should be taking. He also said 4 - 6 mos. before we see positive results. Also mentioned counts could go down before that. Is that what you heard?
Millie

Yes I have heard they can go down. I have been questioning my counts because they keep going down. Could your husband be depressed? I is not uncommon to have depression with the MDS. We feel totally helpless as if nothing is going to work out for us. Also at the Mds foundation when they send you out the information they send out doctors names that specialize in Mds. I have 2 doctors a regular hemotologist by my home for chemo and a doctor that specilize in Mds. I highly recommend you get one. Here are the names of Doctors in Fl. --Mayo Clinic Jacksonvill, Fl. Alvaro Moreno-Aspitia --- University of Floriada Shands Hospital Gainesville FL. Christopher R Cogle --- UniversitynSouth Fl H. Lee Molfitt Cancer Center And Research Tampa FL. Alan F List.
One of the parts of information from the Mds Foundation is about depression.
It takes about a 1 1/2 weeks to get the information. You can also call and it might speed up the procces. The number is 800-mds-0839. They are wonderful there.
I will help out in anyway I can.
Cat

Sorry about the misspelling..

Hi Cat,
Thanks for the information. Moffit Cancer Center is the closest to us. We are SW FL. Why do we need an MDS specialist? What does he do? I thought the hematologist was the only one we need.

The Mds specialist is exactly that. Sometimes they have a better handel on how to treat Mds patients. Your doctor maybe doing all the right things but seeing a doctor that specializes in Mds is always better than not. It is a second opinion. A hemotologist is a good doctor but he went to school for blood disorders, but then didn't specialize in MDS. He just went to school for blood disorders. It just can't hurt. My Hemotologist actually sent me to the Mds specialist to get a second opinion. She now is my primary doctor. She is the one who said I need a bone marrow/stem cell transplant. I am not saying your husband needs one I just am saying better save than sorry.

Cat