My husband was on Watch and Wait for 3 years, then developed an enlarged spleen plus multiple enlarged lymph nodes.
Diagnosis- poor prognosis CD38, ZAP70 positive, VH unmutated.
He was put on the Rialto Trial (Ofatumumab/ Bendamustine plus Idelalisib or placebo. and is now half way through treatment.
Has anyone else got experience of this trial or know someone who has ?
He feels really well at the moment, but we just want to know what we can expect in the near future, as we were planning to move house. This move was cancelled as we needed to remain in the area to be eligible for the trial. It is such a puzzling disease and we just don't know how far we can plan ahead. His CLL specialist won't even hazard a guess. At 72, we had imagined living in the country near our children and grandchildren to enjoy our retirement ,but now we are asking ourselves if we should stay where his health progression will be monitored and treated if and when necessary .