Tips to manage decitabine / Dacogen side effects / enlarged spleen issues?

[Strength14]

Near constant hacking cough, very bad burping/ gas, fatigue, weight-loss from enlarged spleen not going away, appetite loss, rash on stomach, swollen feet and hurting knees . . . these are all side effects someone from my family I care about is currently experiencing. Would really appreciate tips any advice anyone might have regarding ways of dealing with any of these as another last round of decitabine/ dacogen lies ahead before spleen removal and a transplant.

[Neil Cuadra]

Strength14,

I'm sorry that your family member is suffering from so many side effects. Their doctor should be made aware of all of these symptoms, even though some of them (coughing, fatigue, joint pain) are common side effects of this drug. Most patients receiving Dacogen are anemic, so fatigue isn't a surprise.

The doctor can help your family try to determine which symptoms likely result from the Dacogen injections, which symptoms are from the disease begin treated (one of the forms of MDS, I assume), and what can be done about any of them. You may have to accept that some side effects, while unpleasant, are not life-threatening and may be unavoidable, but there may be prescription or over-the-counter medicine to lessen the symptoms.

Since doctors tend to look primarily at the overall progress of treatment, they sometimes need a reminder that side effects have the biggest effect on how patients actually feel day to day, so side effects need their attention as well.