CLL Support Association
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8 months into OHSU drug trial (Obinituzumab, Ublituximab, Bendamustine) doing well!

Hello fellow CLL-ers! I haven't posted much, as we all know, balancing life and this disease proves challenging. I thought it might be time for an update in the New Year.

I've been on TGR-1101 (Ublituximab or U2 as TG Therapeutics' calls it, I call it the Tiger), TGR-1202 (Obinituzumab or Gazyva), and some Bendamustine snuck in here and there as far as my nurses can tell. It's been referred to as the Unity-CLL trial. I have "graduated" to Gazyva infusions (with Bendamustine sometimes) only every 3 months, I started at 800 milligrams of U2 pills every day but eventually had to drop to 400 (2 pills) due to toxicity effects (light dry cough, hot throat and mouth, chest and abdomen pressure, dizziness, fogginess, overwhelming feeling that something is wrong) they advise me to take a few day break and we start up on the pills again, 3x now. It is my understanding that everyone tolerates a different dose, most elderly women can only tolerate 1 per day). My latest CT's showed remarkable improvement in the sizes of the nodes, many are normal sized. Blood tests are now all in the normal range (some counts are a little on the low side but in the normal range nonetheless). I still have extreme health ups and downs when I'm stressed or fighting a bug which stinks but on good days can ski and paddle board or go to the gym for a light workout or yoga. I gained 28 lbs. on my corpse-like frame in 4 months due to steroids and a voracious appetite but actually trying to work off some off it now, as I'm used to being fit. I'm hoping for a refractory announcement this spring or summer but the doctor says I may stay on the pills as a "maintenance therapy permanently" so apparently they are pleased with it. We will see!

Blessings to all of you in the New Year while you manage your health, it's all about balance which is a difficult thing to achieve at times. Peace and the gift of a new day every day, take care!!!

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Hi Chris and thanks for your encouraging update!

I expect that you are hoping for a "Complete Response" announcement this Spring, not a "Refractory" (no longer responding to therapy) one, as it seems that you are just about there :) .

Neil

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