Vidaza

[Faye R]

Please tell me how many have gone into remission after taking Vidaza who are RCMD Advanced Thanks

[Birgitta-A]

Hi Faye!
You know in Europe Vidaza isn’t approved for low risk MDS. I have seen results between 67% response to 38% response for low risk patients.

Here is one study: http://www.ncbi.nlm.nih.gov/pubmed/23596104

High risk patients have better results often a little more than 50%.

Combinations of Vidaza with other drugs show much better results for example Vidaza + Pracinostat 89% response: https://ash.confex.com/ash/2012/webp...aper50414.html . Only 9 patients had participated in this study when this report was written.

Vidaza + Revlimid has showed 72% response rate: http://www.ncbi.nlm.nih.gov/pubmed/22915641
Kind regards
Birgitta-A

[Faye R]

Many thanks tomorrow I go and have 2 units of blood and meet up with the Australian people who are going to go through the procedures with our nurses and myself. Looking more positive about my future now.

[MarianneS]

hubby MDS high risk so far in remission 13 cycles too old for sct dr. stretching out now between cycles.....good luck.

[mitch]

I am not in the high risk group, but I am RCMD Intermediate-1 and have been on Vidaza for nine months/cycles. I am on the 5 day IV treatment plan, with three weeks off between treatments. I had a BMB after the sixth cycle and the doc said I am currently in remission. So they are keeping me on it for the foreseeable future. Hopefully it continues to work. Good luck to you....

Mitch

[Faye R]

Many thanks every one vidaza is very new here in N.Z. in fact I am the first to have it here and count myself lucky (question) I get 2 files injected into 2 different sites the nurses here want to inject both files into the same site how many of you have this done, I was with the Vidaza rep when she was telling the doctors and nurses on how to administer the drug 2 files injected subcutaneously 2cm apart. This is what has been done so far what would happen if they did it their way.

[bailie]

I had eight cycles of Vidaza. There were strict instructions to keep the injections at least one inch apart. It is important to plan the injection sites for each day ahead of time. I would run out of room by the seventh injection. I would alternate from side to side each day.

[Helen L]

My husband was on Vidaza for 2 years. He found that if the injection sites were too close together he would get a large inflamed area and took 2 weeks to heal. I do not think 2 vials at once is a good idea. He used a map similar to what is used for Betaferon. Space the 2 injection sites as far apart as possible each day. He used his stomach and top of thighs and it worked well.

[Cheryl C]

All the best with the Vidaza, Faye. I have avoided doing any chemo so far - don't think it would be very good for me since I'm quite sensitive to even mild drugs.

Can someone kindly define the three levels of RCMD for me please. I didn't realise that there are different levels within that category. Thank you.

[Faye R]

A great many thanks to all who have replied the first 3 days went well bruising and inflammation around the injection sites however 4th day I was not well hospitalized for 2 nights (BMU) all is well again I have found out you have to watch constipation kiwi crush etc for me from now on.

[Leigh Ann B]

Originally Posted by bailie

I had eight cycles of Vidaza. There were strict instructions to keep the injections at least one inch apart. It is important to plan the injection sites for each day ahead of time. I would run out of room by the seventh injection. I would alternate from side to side each day.

How much discomfort was there with vidaza. Mom has stomach problems and so has avoided all chemo. she is 77 and is starting to have infections and severe weakness, platelets 2000, hemo 7.9, transfusing 2-3 weeks.

[DanL]

@Cheryl,

Last I checked, RCMD is a classification under the WHO or WPSS classifications system. It is difficult to keep them all straight because doctors will use them interchangeably depending on what they are trying to tell you, but there are three other systems, two of which utilize a staging type of classification - the IPSS and the IPSS-R. The last system in use is the old French, American, British or FAB.

There is a pretty good resource right here on the forums, although it is missing the IPSS-R, which is a revised version of the IPSS and includes more prognostic data.

http://www.marrowforums.org/mds.html

Here is something on the IPSS-R

http://www.mdsbeacon.com/news/2012/0...ystem-decoded/

RCMD can be associated with a lower risk, intermediate risk, or high risk assessment, depending on blast percentage, chromosomal abnormalities, and severity of cytopenias associated with the dysplasia.

I started out as RCUD - only platelets affected, and moved to RCMD, which was accompanied by being considered low risk on the IPSS-R, but later moved to Intermediate-2 as the disease progressed prior to transplant, still being RCMD.

Hope that helps.

[Cheryl C]

Thanks DanL. I appreciate the time you took to provide this info. According to the IPSS-R score calculator I am Low risk at present (providing my blast count hasn't risen in the last 9 months) so that's a big improvement on 3 years ago! Not sure whether my associated hypogammaglobulinemia would affect this risk level. To me the hypo is almost a blessing because it means I have an infusion of IgG every 4 weeks. Since my white cells (neuts and lymphs) are my biggest issue I believe that these infusions are compensating for my low immune system to a significant degree. See http://primaryimmune.org/treatment-i...bulin-therapy/ if you are interested.

I do hope that the Vidaza is providing you with relief from the GVHD and that your counts are improving now.