Starting Vidaza on 02/04/08

[choijk]

My father will be starting Vidaza on this starting Monday through Friday (5 days) at 70 mg(?) through an IV injection.

Just a recap: He is 72 yrs old; considered a low risk MDS patient according to IPSS; only rbc;s affected; receiving 1-2 units every bi-weekly; currently on Exjade; no success with Revlimid (only lasted 5-6 days);

If anyone can share there experiences with Vidaza (injection or IV) that will be great. For instance:

1) How long have you been on Vidaza? If not on Vidaza, how long were you on it?

2) What were some of the side effects? My father has been given a presription of nasea.

3) What are your thoughts about Vidaza vs. transfusions? The reason my father wants to try Vidaza is because he hates getting poked every 2 weeks for blood transfusions. But with the Vidaza, he will be getting poked 5 days a week, every first of the month.

4) Vidaza and diets? Is there anything you should avoid eating/drinking? What about Vitamins ?

5) Is there hair loss with Vidaza?

6) Any thoughts of Exjade and Vidaza used together?

Just any general thoughts and experiences would be helpful. Thank you so much!

[sdrake]

My dad was on Vidaza for 2 1/2 years and did very well on it. The main side effects he experienced were very sore arms from the injections, and constipation. Dad only required 2 transfusions the entire time he took Vidaza. He did not experience any hair loss at all. I can’t offer anything about Exjade and Vidaza.

We were all very grateful for the good response Dad had with it. This past summer it quit being effective. He has been on Revlimid for about six months with minimal results. He has required transfusions of both platelets and rbc. He just underwent radiation on his spleen because it had gotten very large since the Vidaza stopped working, and it was getting quite painful. We keep praying things will improve. I certainly wish something would work as well as the Vidaza did.

I hope your dad’s response to Vidaza is as good as Dad’s was. Take care, and I’ll be thinking of you and your dad.

Shari

[Mary4Mike]

June,

I have been wondering how your dad was doing on Revlimid. Sorry to hear there was no response. Revlimid is so much easier to administer (daily oral) verses the injections. My husband was on Vidaza for 12 months. During that time he did not need a TX. Prior to that, he was TX’d once a month. Then, it just stopped working. His HGB has always been his main concern, other counts have been good. On the Vidaza he reached a HGB of 10 to 10.5…..enough to keep off TXs, which is considered a complete response. He never had any side effects except EXTREME soreness at the injection sites, loss of hair and peeling at the injection sites. They rotated the injection sites, right arm, left arm, left side of stomach, right side of stomach. During this time, he also took Exjade. He had no side effects from that either. He has gone off Exjade for the time being as his Creatinine is elevated. Your dad might want to consider a Medaport. Mike says he can not believe the relief it is not to be poked anymore since he got his. They put the port in under a local anesthesia and then he drove home.

Also, Mike takes several vitamins and supplements and it has never caused a problem.

If you have anymore questions, I would be glad to answer them if I can.

All the best to you and your dad.

[choijk]

Shari and Mary,
Thank you for your posts! In 12 hours we will be starting the Vidaza. I have a lot of jitters and anxiety of the unknown. But we shall see how my dad will tolerate the Vidaza. I am praying for a good response but I do know that everyone responses differently.

Mary,
Unfortunately Revlimid was not the chemo for my dad. He was only on it for 5-6 days and had to discontinue because of the side effects. The side effects he had was hives and swollen face (forehead, eyes, cheeks). Our hema thinks that my dad was having an allergic reaction and suspects that even if the dosage is lowered, he will have the same response. I was hoping that Revlimid would be the big guns we were looking for since it is so convenient – a pill.

For the most part, my father is in great spirits right now. When he receives his bi weekly transfusions, he is lively and has a lot of energy. I can tell when he is in need of a transfusion because he is pale and weak during that time. I am really thankful because my dad has been a soldier throughout this whole ordeal. I just hope that Vidaza and the side effects wont be too bad to change his attitude.

Is there any special diet you might recommend during the Vidaza? And during the Vidaza treatments, did your dad/husband drive to the hospital by himself or did someone accomapny him? Our hema told us that my father will be able to drive. But I will be joining him tomorrow for his 1st treatment.

I’m sorry, but I have another question. Did your husband/dad experience any nausea?

As for the injections, our hema told us that my dad will be receiving it through an IV instead because of the experiences patients had with the injections (just like you mentioned, soreness on the arms). I’ll share my father’s experiences with Vidaza as they occur.

[choijk]

I’ve done so much research on this, but still have no idea what any of this mean. Can someone please explain to me in layman’s term what a bilirubin, ALT, and Alkakine Phosphatase is? My dad’s Liver Function Panel came out as the following:

BILIRUBIN, TOTAL 0.8
ALT 71
ALKALINE PHOSPHATASE 55

Thank you for your help!

[eve]

hi june

my dad never experienced any nausea – took anti nausea meds 1 hour after treatment as prescribed by his doctor
he probably would have been able to drive himself, but i went to every treatment with him-
the worst side effect he had was constipation – and that was from the anti nausea medication – he found out by trial and error that he could take less to the med and get the same results and doing that really helped – he also took some stool softeners and occasionally a laxative –

call me if you wish to talk and get any other info

good luck
eve

[cherylm]

My dad really had no side effects from the Vidaza. He did get sore from all the pokes though and decided to go with the cath. According to him it was the best thing to do. Now everything gotes through the cath and he’s not a pin cusion anymore! Unfortunatley the vidaza didn’t work for us. He was on exjade, too. Same issues as mentioned in other posts. Way too harsh for my dad’s kidney (he only has one). The doctors at NY Presbyterian took him off it. Kidney function is now pretty much back to normal. Good luck to you! I know vidaza works for a lot of people.
Cheryl

[JSRN]

Mom tried Vidaza twice. The first time the doctor said it was not working after 4 months and stopped it. But then we noticed she didn’t need transfusions as often about 2 months after going off it. So they thought maybe a delayed partial remission. Her oncologist did not put her back on it since he said he never saw success with Vidaza. The oncologist I work with said he should have put her back on it. When she started needing transfusions again more often, he wanted to put her on Revlimid. But the bone marrow showed she was not a candidate for it. So back on the Vidaza for 6 months. She still needs transfusions about 2-3 weeks. But without the Vidaza, who knows, maybe she would need them more often.
Mom did have severe nausea the first treatment. They had to start giving her Anzamet IV prior to the Vidaza. This did cause severe constipation. She did not lose any hair. Vidaza did drop her counts so she had to watch for infection. I believe she also lost some of her hearing although she claims it is just wax in her ears. Mom did drive herself during the treatments. She did experience extreme fatigue. All she wanted to do was sleep.
Mom takes Folic acid and Vit b6.
The doctor wants her to take Ex-Jade but she is against this due to cost and side effects.
She is 81 and is tired of all the medications. She has been dealing with MDS for almost 9 years now.
Best of luck to your dad. I pray it works for him.

[Mary4Mike]

June,

Mike did not experience nausea with Vidaza and yes, he went by himself for the treatments and then went on to work. I think that it is great that they are giving Vidaza through an IV now. Keep us up to date on your dad’s progress and I will pray for him as I do for everyone here.

Mary

[choijk]

Hi,
Just wanted to give an update on my dad and Vidaza. Instead of starting Vidaza on Feb 4th, it got pushed back to Monday, March 3rd.

My dad started his first round of Vidaza this week on Monday and will be finsihing on Friday. So far, no side effects at all! He looks great, he’s in great spirits. According to him, he is keeping a close eye on his own body to see if there is anything that is different. So far, he feels none.

For the patients that had side effects from Vidaza, when did these occur? I’m praying for great results.

[Author]

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