Refractory MDS

[sae36]

My 71 year old father was just informed that Vidaza was no longer effective / working for him. They have diagnosed him as 'refractory'

Can anyone help with information regarding clinical investigative programs?

[Birgitta-A]

Hi sae36,
You know there are patients who try Dacogen after Vidaza. Then we have the immune modulating drugs Revlimid and Thalidomide. Some patients from this forum have tried Rigosertib (ON 01910 or Estybon).
http://ash.confex.com/ash/2011/webpr...aper43388.html

Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx, received 142 units of packed red blood cells until Sept 2010. Started Thalidomide therapy June 2010 with good results

[Willa]

My husband (age 74) is taking Dacogen, but we have been told that he might become immune to it, thus it would no longer be effective. Not sure yet what we will try when or if this happens. Right now he is doing great, yet I am always looking for possiblities in other drugs.
His Dacogen is given, low dose, for 5 days, every six weeks.
God Bless ...

[sae36]

Originally Posted by Birgitta-A

Hi sae36,
You know there are patients who try Dacogen after Vidaza. Then we have the immune modulating drugs Revlimid and Thalidomide. Some patients from this forum have tried Rigosertib (ON 01910 or Estybon).
http://ash.confex.com/ash/2011/webpr...aper43388.html

Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx, received 142 units of packed red blood cells until Sept 2010. Started Thalidomide therapy June 2010 with good results

Hi Birgitta -

After a bit more searching and web work we found the following:

http://mdsclinicaltrial.com/oncology...ite-locations/

There is a site near my father in San Francisco, where the physician has started him in the clinical trial for refractory patients.

[Birgitta-A]

Hi sae36,
Good that your father is getting Rigosertib! Hope he will have a positive response!
Kind regards
Birgitta-A

[Jun]

Hi Birgitta-A,

According to the protocol of "Rigosertib", the trial is randomized and comparing to versus　"best supportive care".
So, the chance of receiving "Rigosertib" is less than 100%, I think.
The regimen is appropriate ?

Regards,
Jun

[Birgitta-A]

Hi Jun,
Yes, this is a Phase III trial where the patients are randomized. Often 50% of the patients get the drug and 50% best supportive care. Sometimes the patients that didn't get the drug during the trial can get it after the trial. Ask your father's doctor when the trial is over if your father got the drug.
Kind regards
Birgitta-A

[sae36]

My father just completed his 7th treatment with rigosertib - he has returned to work about 20 hours per week and has been feeling much better.

His physician gives his drug to him by a pump - which I worried about at first, but has been very good. My father is in great spirit and seems to have more energy.

[Birgitta-A]

Congratulations to your father (and to you) !
Kind regards
Birgitta-A

[Jun]

That's nice to hear_!
Rigosertib has being prepared to initiate a Phase I clinical trial for the treatment of MDS in Japan, too.
We are exited to expect to have :excellent results!

[cfai84]

Can you please share how your father was treated and for how long? My brother is also diagnosed with the same thing, and now I'm suspected he has Grade 4 Guts GVHD. He's only 36 years old. The ATG, which is the 2nd treatment, didn't respond for a week and they have to start the 3rd treatment because he cannot eat or drink beverages except water. He has been like this for almost 4 weeks...

I'm having a meeting with the Doctor today in 6 hours... this is really scaring me out...

God Bless...