Need info regarding Vidaza treatment

[Anne-Marie]

Hi

My name is Anne-Marie and I have MDS.
I am getting ready to start a treatment with Vidaza and would appreciate any info

I had few months ago completed 5 cycles of dacogen and the result was marginal. My Dr advised to try now Vidaza. Is there anyone that had done both treatments? Could you please tell me if Vidaza's side effects are more severe than dacogen, or about the same

Does the subcute injection have to be administered in a chemo unit or could it be done by any nurse? Is the drug mixed up in the pharmacy or it arrives ready to be administered as an injection?

Any info will be greatly appreciate

Thanks
Anne-Marie

[Steve Kessler]

Hi Anne-Marie,
I have only tried Vidaza. My doc says an oral presentation at the latest ASH meeting showed that Vidaza had life extension benefits, but Dacogen didn't. I understand Vidaza turns into Dacogen in the body, but don't know why the results might have varied. As this was an oral report and not peer reviewed, it should be taken with a grain of salt.

Vidaza is a powder that has to be mixed just before administration. So far, it is available for sub-cutaneous injection and infusion. I have had a port inserted under the skin in my chest and receive infusions. Port is also good for RBC transfusions and other uses. I used to get severe rashes on my stomach with the injections but have no side effects from the infusions. The anti-nausea drug I take causes constipation, but milk of magnesia beforehand usually takes care of it prior to the constipation. The injections could be done in a nurse's setting, but the port needle is a special type and many offices don't have them.

Hope this helps. Best of Luck!
:)

[Anne-Marie]

Dear Steve
Thank you for your reply
One more question . Does the sub-cutaneous injection also come in the form of powder that needs mixing before being administered? I have a problem in Canada where the hospitals for cancer treatments and chemo clinics do not work over the weekends and I am trying to see if I can have the injection administered in an emergency clinic. This would probably be possible if it comes pre-mixed. If it involves a pharmacy to mix it just before administration it becomes much more complicated.
Did you switch from sub-cute injections to infusion because of the rash?

Thanks a lot

[katherineann59]

Hi Anne Marie,
The only chemo I've ever had is Vidaza. I used to get the injections, but I have switched to IV 2 months ago and it is much easier for me. My first doc tried to give the injections in my stomach, but I had reactions - pain and cramping during the shots and inflamation, skin peeling at site while nausea following the injection even though I took meds to counteract nausea. I switched to receiving shots in the back of my arms - did this for almost 2 years - still had site reaction, but no cramping. I do not have a port. I get the anti-nausea med at the beginning of the IV, so no oral meds. I've been receiving Vidaza for almost 2 years (2 year anniversary in August). So far, it has kept the disease under control. The IV seems to be a whole lot easier for my body to take. Good luck.
Kathy:)

[Birgitta-A]

Hi Anne-Marie,
You know according to the latest research Vidaza should be given 5 days/week for best results:
http://www.reuters.com/article/pressRelease/idUS130597+11-Dec-2007+PRN20071211
Kind regards
Birgitta-A

[Anne-Marie]

Dear Kathy

This is amazing , good for you. I haven't started the treatment yet (depends when I will be able to bring this unapproved med in Canada) but trying to learn about it. From your experience, it seems that IV is easier. How did you manage to get around the issue of having a port?

Best of Luck

Anne-Marie

[Eileen]

Hi Anne Marie,
Vidaza is working well for me,when my hmg goes below 12 i get a shot of procrit which brings it right up.I started with shots in stomach, Sept 2007 with nausea, sore stomach night sweats, loss of appitite but it worked .have.switched to iv ,5 cycles with no problems plus have gained some wieght back , no more night sweats ,very little nausea but controled with ani nausea meds. iv much better for me. feel good, live my life as before ,& have faith that each day is a new begining. Hope this helps & eases your mind.
Eileen

[Dick S]

Hi Anne Marie,
Vidaza is working well for me,when my hmg goes below 12 i get a shot of procrit which brings it right up.I started with shots in stomach, Sept 2007 with nausea, sore stomach night sweats, loss of appitite but it worked .have.switched to iv ,5 cycles with no problems plus have gained some wieght back , no more night sweats ,very little nausea but controled with ani nausea meds. iv much better for me. feel good, live my life as before ,& have faith that each day is a new begining. Hope this helps & eases your mind.
Eileen

Eileen, so good to hear you are doing well. I live in Sebring,FL and am 73, so as you know, a permanant fix is out of the question for me. So far they have me in a holding pattern with no meds as yet. I just take it one day at a time and pray. Good hearing from you and keep up the good work.
Dick

[Eileen]

Hi Dick,

Glad to hear from you.We`re almost neighbors,I live in Largo FL.
How are your levels? Do you get any meds at all?
hope you continue to be ok.It can be a trial trying to stay positive at times ,some time it`s just one foot in front of the other is`nt it?
I`m also almost 73 yrs young .
Hang in there.
Eileen

[SMA]

Hi Ann Marie,
My father has MDS and lives in Toronto, Canada. Have you already started to receive Vidaza? If so, how were you able to get it and how much does it cost?
Any information that you can provide would be greatly appreciated.

Thank you.

SMA

[Anne-Marie]

Hi SMA

I did not get Vidaza yet and am not sure how will I be able to do so in canada since it is not an approved med.

My son leaves in NY, I may try there but the cost may be too high. At which hospital is your dad beeing treated for MDS?

If there is any info I can help with, please contact me

Best of luck

[Steve Kessler]

Hi Anne-Marie,
Since I get the Vidaza through my port, I can't speak definitively about the sub-cutaneous cost but, not including the lab work and ancillary costs, the drug appears on my bills as $412 per dose. At seven times a week, that's $2,800. Yearly, that's around $35,000. I'm sure my medicare cost is less, but I don't know how much. Nothing's cheap about MDS. Cost of Revlimid without insurance is around $250,000 yearly.:rolleyes:

By the way, my doc says the 5x weekly results are a community-based study, not confirmed yet in an ivory tower setting.

Best of luck!
Steve

[Eileen]

Hi Everyone,
This is my 11 cycle of vidaza ,6 months in stomach ,5 months with. iv My counts are so good that my uncologist said after my 12 cycle it will be every 6 wks.Has any one tried this?It`s really good news for everyone on vidaza,you just have to hang on for a while with knowledge that it does work.
live your life with gratitude for all the wonderful Drs ,family & friends
don`t waste a precious moment .

Good health to you all

Eileen