Vidaza Treatment Questions

[daughter searching for answers]

My father was diagnosed with RAEB (5-10% blasts) March 2007 after having PolyC and taking chemo drug Hydrea for 2 years. He took 6 straight months of Vidaza 7 days a week (only on work days not weekends). Oct, 2007, doctor did bone marrow biopsy and was approx 5%. Said normal and would treat symptomatically. Daddy’s blood raised and held for 4 weeks but has come down for the last 5 weeks. Counts are close to what they were 1 month after starting chemo. Doctor says unless he is showing symptoms, that it is ok for blood to fall down. He says people with chronic illnesses adapt. Daddy has never had to have transfusions. Only Vidaza. Has anybody else been treated in this manner? Blood is at 8.3 right now. WBC normal, RBC low, Platelets normal.

[eve]

from my experience those patients that completely stopped vidaza when things were looking better was that they ran into trouble down the road – but as we always say on this forum, everyone with mds reacts differently

at a hgb of 8.3 my dad would not have been able to get out of bed – he was always transfused when his hgb got to 9 –

how much experience has your doctor had with mds patients – that is the critical question

good luck
eve

[sdrake]

My understanding is that treatment with Vidaza is continued as long as it benefits the patient. My dad was on it for over two years and did very well.

I would certainly question why they are not continuing the Vidaza, especially since you are seeing a drop in counts.

Take care,
Shari

[kls]

I agree. We were told that my Dad would continue Vidaza as long as it was working. Maybe a 2nd opinion would help. Good luck!

[californiamom]

If the Vidaza is keeping his blood counts in check and he’s active I would suggest he stays on the Vidaza until it stops working. I know with my dad it was working so good that the doctor decided to take him off and that’s when everything went down hill. I would definitely make sure your doctor is experienced with MDS, as my dad’s was not, but he like him.

Good luck, I hope everything works out for you both.

Kirsten

[daughter searching for answers]

Thanks for all your advice. I agree that a second opinion is needed BUT he is happy and comfortable with this doctor. Also, he says the pain from the 14 shots (2 a day) of Vidaza a month is very bad. He questions whether it is worth it as the chemo makes him feel pretty bad for a while after. WBC and platelets fall from chemo each month but never had to delay treatment while taking due to a low ANC.

Were your dads taking Vidaza 7 straight days or skipping the weekends? I did not feel as if the weekends needed to be skipped but that is how they do it here.

Thanks again for your help

[sdrake]

My dad did seven straight days. Dad’s arms would get pretty sore as well – sometimes worse than others.

Shari

[eve]

my dad took 7 days straight – did not skip weekends – but they did lower the dosage after a couple of years and space out the treatments – sometimes it would be 6 weeks between treatments

the vidaza pretty much kept my dad transfusion free (except when other medical problems occurred and that would usually lead to a tx)

good luck
eve

[roseanneinia]

This was my Dad’s Vidaza treatment week. He asked the doc on Monday if he could have the “drip” rather than the injections. Turns out the drip takes just 1/2 hour. Those fourteen injection sites got pretty miserable for him.

The only side effect he noticed from the drip was a fairly strong “feeling” of nausea the evening of the first one. (He did have anti-nausea meds, and he had never experienced nausea with the injections.)

I’m concerned because my parents believe Dad is going to get one more round of Vidaza in December and then that is all. (four rounds total) Could be that they misunderstand. Hopefully I can attend their appt with the hemo in Dec.

[jaxem]

hey, guys
vidaza is testing their new ORAL med. something to be aware of.

[daughter searching for answers]

Well, Dad just had his bloodwork done this morning and the counts are as follows WBC 8.8, RBC 2.67 HGB 8.0 HCT 25.4 Platelets 145. At official diagnosis of MDS the counts were WBC 4.0 RBC 2.60 HGB 8.2 HCT 24.8 Platelets 288

Just seems like doctor should be doing something other than “waiting for symptoms”.

Mom and Dad are at their other home right now and do not have a doctors visit schedulled until Dec 11.

Any Ideas?

[daughter searching for answers]

Just wanted to update you. Local Fl. doctor has now said we must have oncologist in N.C. also so that he can put order in for transfusion. SO, he is having a transfusion on Wednesday (hopefully) if new doctor prescribes.
Thank you all for your input on Daddy. It is so appreciated. I have been reading boards since March but did not sign up until recently.
I pray for each and every one of you – including the care givers as they too have a very rough fight.

God Bless you all

Heather

[daughter searching for answers]

12/11/07 update
Daddy got back home and went to see doctor. Was told starting chemo again and when he went to start, nurse advised they were changing to Dacogen from Vidaza. Also, doing 5 straight once a day doses instead of the recommended 8hr/3day. Does anyone have experience with this? Thought as per Vidaza website, we were showing partial if not complete response as numbers held for 4 weeks. Confused. As Always.
Any help appreciated.

[gj]

I’ll be starting my 6th round of Dacogen this Monday, if my counts are good enough. I’ve been on the 5 day route and was told that it was more a matter of preference. The dosing takes about an hour for 5 straight days. I’ve had no immediate reaction to the drip as long as I get enough hydration during the treatment. After treatment my blood counts drop but then ever since I was dx with MDS, I run low blood counts and have a significant amount of fatigue but keep on going. There is another patient with the same oncologist and we are pretty much mirroring each other. Doing dacogen and then waiting for the blood counts to nadir and come back roughly 4-5 weeks out and then the next dose.
I was switched from Vidaza beacause of a bad reaction.
Hope these thoughts help a bit. WIshing you and your dad the best.

[Russ P.]

I just finished my 3rd round of Dacogen today. (I had 4 rounds a year ago just before my MDS went into leukemia -AML) After a 9 month clinical trial of Vidaza + PXD-101 my white counts went up so my hem/onc put me on the 5 day Dacogen regimen. My minor problem with it has been constipation followed by some diarhea about the 3rd day. My CBCs have looked better after recovering from the nadir than the 1st round. Feel a little punk for a week after Dacogen but the good news is I have not had a tx for 6 weeks and my HGB is still 9.8. My 11 months of survival after the AML dx, I attribute to the prayers of many. Also I don’t feel too bad most of the time. Everyone can react differently with MDS so hope your dad’s is positive.
Russ

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