10-23-19 update

[AuntHelen]

We had an appointment today with the oncologist. He was happy with my husband progress on the Gazyva. My husband will have Two more infusions this year. Dr. Said we would wait three months then do full body scans and another bone marrow test. If he is MRD negative it will be great! If he is MRD positive, the Dr. suggested the Merrit trial with ibrutnib 400 for three years. I guess we will decide when we get to that bridge. I worry about all the side effects.

[New1948]

AuntHelen, I went through Gazyva treatment at Mayo Clinic in Florida. Had a rough start but came through 4 infusions ok. Then on the Merit trial. Finished my year one on ibrutinib last Monday. Blood counts are and have been normal or very near normal, with no notable side effects. MRD test has found 20 CLL cells out of 10,000. Of course we are all different. I'm told that the Merit trial has a small cohort of about 30, with a couple that have completed the 3-year 420 mg ibrutinib per day treatment. There may be 1 or two that have achieved MRD negative. I'm very happy to only have 0.20% CLL cells. I do have to travel from NC to Florida, but am now at the every 3 months schedule.

You can look back at my prior posts to see what I was dealing with relative to mutations, etc. And if you have any questions let me know.

Hope things works out for you and your husband.

[Canuck901 in reply to New1948]

Good news! How old are you ? Usually younger people can handle the side effects much more than the elderly

[New1948 in reply to Canuck901]

71. DX In 2014. Purpose of the Merit trial is to determine if and when ibrutinib treatment achieves MRD undetected.

[AuntHelen in reply to New1948]

So then you are on the medication the rest of your life even though you reach MRD undetectable ?