Miserable Side Effects with Vidaza

[Shirlee N.]

My husband has MDS that has converted to AML. He has had 5 rounds of Vidaza and the side effects of bloating and cramping get worse with each cycle. The bloating is far worse in the mornings and begins shortly after he gets up (5-10 minutes). He also becomes short of breath. If he rests for about an hour, the symptoms usually go away. He has had 2 episodes of this severe bloating that required an ER visit with IV pain meds nausea meds. He is due to start round 6 on 6/2 and I don't see how he can survive it. Any thoughts?

[Neil Cuadra]

Shirlee,

I'm sorry to hear that your husband is suffering through these side effects. I suggest that you discuss two questions with his doctor:

1. Can these side effects be treated directly or prophylactically?
   
   
2. Could the schedule of Vidaza treatments be stretched out to give your husband a little more recovery time in between or during the cycles, without losing the benefits of the treatments?

Pain and especially trips to the ER are not only unpleasant but they add extra physical and mental strain that interfere with the ability to fight AML, so the goal is to find the right balance.

His doctor may bring up ideas of his or her own about how to deal with this. Doctors should consider each patient's overall well being, not just the disease being treated. And patients shouldn't be shy about asking for this.

[Shirlee N.]

Thank you for your perspective.

[milliken2]

Shirlee;
Is your husband getting the bloating during his Vidaza treatment only, or is it on his off weeks as well? Like Neil said, don't be afraid to ask questions.
Also - what is he eating before he goes to bed? Sometimes a Tums or Rolaids before going to bed might help to 'pre-relieve' the cramping or bloating. I sure do hope he feels better soon. Good luck to you both.

Beth

[Shirlee N.]

Tom was getting some bloating before he started Vidaza, it's just so much worse while in treatment. It's very odd because it seems to start when he coughs, it moves to bloating, cramping, tightness in his belly and then shortness of breath. There are some mornings when he can barely get down the hall. The symptoms all go away after a period of 1-2 hours.

[tytd]

Hi Shirley, I just wondered what your husband, Tom's blood counts were on the Vidaza. Is he getting more anemic? Is the bloating in his upper abdomen? and could he be having some angina or heart problems related to the anemia? I would ask his doctor if he could be having any cardiac issues since he gets more short of breath with these spells. Good Luck tytd

[Shirlee N.]

Thanks for the input. Tom's hgb and hct are pretty stable. He is using procrit and neupogen. Good points about the cardiac issues. I will keep you posted