Vidaza after Dacogen

[Chirley]

Hi Susan,

I get IV Vidaza 200mgs 7 days with 21 off. When I was on 140mgs I had no side effects to speak of except a little constipation. Now that I'm on a higher dose I do get a little nausea, diarrhoea,fatigue, tender gums and sore muscles. I'm actually on a higher than recommended dose because my disease progressed on the lower dose. I'm keeping my fingers crossed that the increased dose is worth the side effects and am looking forward to my next BMB whenever that may be.

As far as I know we don't have access to Dacogen here.

Regards

Chirley

[Susan L]

Thanks for your comment. I am not sure what my dose is - I'll have to ask. Same side effects you have, this was my second month and the side effects (this weekend) have hit a bit harder. It'll all be worth it if I get some better results on the BMB. I will let you know when I have it done, next month I believe. I will hope for the best results for you. Take care.

[Birgitta-A]

Hi Chirley,
You are really lucky when you don't have severe adverse effects with such a high dose of Vidaza! Hope the drug now will have good effect!
Kind regards
Birgitta-A

[Debbie W]

Hoping that this next week goes well for you and more importantly that it works!

Best regards,
Debbie

[Susan L]

Hi - Not feeling that great but it'll be ok. Got news from my insurance that they will not be paying for the Aloxi that I have been getting IV prior to the Vidaza. Denying all the way back to May - had a review committee deny it. I called my Doc- they didnt get notice yet - I said I will go without it, but am really concerned what they are going to say about the costs of the Vidaza which I know is alot. I was glad to see on Cambridge that Mike is doing so well. I hope he sets some records!! Take care of yourself.

[Neil Cuadra]

Originally Posted by Susan L

Hi - Not feeling that great but it'll be ok. Got news from my insurance that they will not be paying for the Aloxi that I have been getting IV prior to the Vidaza. Denying all the way back to May - had a review committee deny it.

I don't know the specifics of your situation, but the general advice I've heard is to appeal denials of coverage if you don't think a substitute will be as effective. When patients pursue appeals, armed with letters from a doctor documenting the need for a medication, a good number of insurance decisions are reportedly reversed.

[Susan L]

Originally Posted by Neil Cuadra

I don't know the specifics of your situation, but the general advice I've heard is to appeal denials of coverage if you don't think a substitute will be as effective. When patients pursue appeals, armed with letters from a doctor documenting the need for a medication, a good number of insurance decisions are reportedly reversed.

Thank you for the advice - I called my Dr last night, they are going to appeal this decision. I was just so upset that it is October and they are denying after approving it since May. I will let you know the decision.

[Mary4Mike]

Susan,
I agree about appealing this. We had to appeal a denial connected to coverage with Mike's transplant in regard to labs showing chimmerism. I sent a letter from the doctor explaining the importance of these tests. We ultimately won coverage. Don't give up!

Good luck with this. No one should have to suffer nausea associated with chemotherapy!

[Susan L]

Thank you I wont give up - that is one thing I am very stubburn and a fighter. My doctor called and they are appealing. In the meantime I will get Compazine for the nausea.

[cathybee1]

I've been lurking here, but wanted to suggest that if the ins. co is still uncooperative after the doctor appeals, you can send a complaint to your state insurance commissioner. The situation you describe seems very wrong. (For Georgia, here's your link: http://www.gainsurance.org/ConsumerS...Complaint.aspx

[Susan L]

Thank you for the suggestion and will see what happens with the appeal. It does seem wrong. I will keep the link to use if needed. I will let you know what happens. Take care

[Debbie W]

Just checking in to say hi and hope that things in your world are OK. I've lost track of when you start the next round, but thinking it may be this week or next.

Wishing you continued progress,
Debbie

[Susan L]

I have posted this twice now - hope it goes thru this time. I had my treatment last week, so far so good. My nadir period is 17-28 days after and they are true. Bad mouth sores and tired. errrrrrrr - I have one more treatment Nov 29th week, and then in December will do the biopsy to see where I am. If not working, I will be starting to look for donor. In a way, I wish we could start looking for a donor, I would love to have normal energy for a period of time. I have been following Mikes wonderful success and am so happy for you both. Thanks for asking and take care. Huggs to ya~~

[Debbie W]

Gosh I really did lose track of time! Sorry the Vidaza is causing more problems for you, most of all I hope that it is working. Even if you have not made the decision to have a transplant can some preliminary testing be done? Sorry to read on the other thread that insurance is now giving you a hard time about nausea meds now.

Mike is doing well, napping at the moment

[Susan L]

Originally Posted by Debbie W

Gosh I really did lose track of time! Sorry the Vidaza is causing more problems for you, most of all I hope that it is working. Even if you have not made the decision to have a transplant can some preliminary testing be done? Sorry to read on the other thread that insurance is now giving you a hard time about nausea meds now.

Mike is doing well, napping at the moment

Hi - I am hoping that this is working, and I just dont understand why I have so many side effects. The tiredness is the worse thou-and I do expect alot out of myself thou. Next treatment is the 29th and then bmb in Dec. I am happy that Mike is doing so good. Gives alot of hope to us. Take care.