Vidaza: what to expect

[slip up 2]

spouse finished 1st round...has had one unit of blood and platelet trans....what to expect and for how long will the counts go back up before next round...we were told it would be a ride... he has been getting 2 units of red every week for 6 months...thanks again

[Birgitta-A]

Hi slip up 2,
As far as I understand the counts often decrease during the first 2 cycles - hopefully the counts then start to increase if the patient is responding. It is impossible to know how the individual patient will respond. You could read page 4 in this article. Vidaza is azacitidine.

"Myelosuppression is the main dose-limiting toxicity; the risk is highest during the first 2 cycles and decreases as the patient’s hematological function is restored. Less than 5% of patients required drug discontinuation due to hematological side effects. Close monitoring for hematological toxicity is recommended (including nadir counts - the lowest count) and supportive care provided when required. Doses for subsequent cycles should be adjusted based on nadir counts and hematological response." http://fr.cancercare.on.ca/common/pa...x?fileId=59688

Hopefully your spouse will respond !
Kind regards
Birgitta-A

[freedom99]

Hi Slip Up 2;
My wife had very few side effects with three cycles of Vidaza using 7 days of treatment and 28 days off with CBC twice a week throughout and transfusions when needed. Platelet transfusion at 20 and RBC at 80.
Injections were used which worked very well and only took abut 15 mins each day. CBC is taken prior to treatment to determine any action or adjustment before treatment.
Kytral was taken for nausea about two hours before treament and initially we took a large empty paper cup with us on the one hour trip back home in case my wife got sick.
Very little nausea during the three cycles. RBCs and platelets went down during the three cycles to where platelets had to be transfused 2x a week from once a week and RBC 1x a week from once every two weeks. Four weeks after the treatment the RBC transfusion is back to once every two weeks and PLTs has remained at 2x a week.
PLTs are 5 units and RBCs 2 units for each transfustion.
My wife has a port installed so they don't have to pick her each time for transfusion. To get that procedure done it has to be ordered from your GP. This saves a lot of grief.
In Ontario the seven days involve Monday to Friday and then coming back on Monday and Tuesday to finish. Doing just five days to fit in with Monday to Friday will result in OHIP not wanting to pay for the Vidaza.
The Vidaza was discontinued because there was very little movement to a postive result.
The baseline for Vidaza is to use it for at least 5 to 6 cycles before making a decision and many on the forum encourage that.
Don't be afraid to push the doctors buttons on that.
Our treatment was done at the Cancer Clinic at Met Hospital in Windsor and from the getgo we got treated royally with many volunteers and personell treating us very well and encouraging us.
All The Best

[slip up 2]

a little update, my husband finished his 2nd round of Vidaza last week, no need for PLTx this time and his HB has remained steady, this is the 1st week in 6 months he has not needed any Red cells, usually 2x week and his PLT has come up to normal range NEUT's low....

[mausmish]

Sounds like a promising response thus far. That's great news!

[slip up 2]

3rd round of Vidaza just finished...still not had red blood trans...plt in the 380 range (normal) and the neuts have come up...spleen is almost back to normal...he will have a bone marrow test after the 6th round...

To those who have gone before him with the trials and the research...thank-you...

[Greg H]

Outstanding! He's going to be a poster child for Vidaza. Here's hoping for a long and durable response.

Congratulations!

Greg

[Janice M.]

Originally Posted by freedom99

Hi Slip Up 2;
My wife had very few side effects with three cycles of Vidaza using 7 days of treatment and 28 days off with CBC twice a week throughout and transfusions when needed. Platelet transfusion at 20 and RBC at 80.
Injections were used which worked very well and only took abut 15 mins each day. CBC is taken prior to treatment to determine any action or adjustment before treatment.
Kytral was taken for nausea about two hours before treament and initially we took a large empty paper cup with us on the one hour trip back home in case my wife got sick.
Very little nausea during the three cycles. RBCs and platelets went down during the three cycles to where platelets had to be transfused 2x a week from once a week and RBC 1x a week from once every two weeks. Four weeks after the treatment the RBC transfusion is back to once every two weeks and PLTs has remained at 2x a week.
PLTs are 5 units and RBCs 2 units for each transfustion.
My wife has a port installed so they don't have to pick her each time for transfusion. To get that procedure done it has to be ordered from your GP. This saves a lot of grief.
In Ontario the seven days involve Monday to Friday and then coming back on Monday and Tuesday to finish. Doing just five days to fit in with Monday to Friday will result in OHIP not wanting to pay for the Vidaza.
The Vidaza was discontinued because there was very little movement to a postive result.
The baseline for Vidaza is to use it for at least 5 to 6 cycles before making a decision and many on the forum encourage that.
Don't be afraid to push the doctors buttons on that.
Our treatment was done at the Cancer Clinic at Met Hospital in Windsor and from the getgo we got treated royally with many volunteers and personell treating us very well and encouraging us.
All The Best

Hi Freedom 99 - I live near you in Amherstburg. I am newly diagnosed as Hypoplastic MDS. I have been seen by specialists in London and at Princess Margaret. I am not sure if I am responding correctly, but I would be happy to speak with you at some time regarding dealing with the local hospitals etc. If you would be interested, please contact me and we can talk. Currently I am at a "wait and watch" status, but I am on the registry for a MUD. Thanks, Janice

[slip up 2]

my spouse had just finished 5th set and all counts are in the normal range...thanks to all who have gone before him in the trials....