I have SLL and started treatment on veneteclax and obinutuzumab last fall. I had a concerning " twitching" reaction after the 7th infusion of obinutuzumab but decided to not be a quitter and take the last infusion. I really wish I could go back and change that decision. A few days ago I developed joint, muscle and bone pain so severe that I could not put any weight on my ankles, could not close my hands and could not get around without assistance. So overnight I went from walking two miles, doing yard work, etc. to almost completely debilitated. After being told by the triage nurse at the oncologist office to take tylenol (ugh) they finally gave me 20 mg of prednisone which allows me to get around, albeit still with considerable discomfort. I definitely don't want to take the steroids but I have no choice right now. I can deal with whatever I have to but I have to admit I am quite worried (probably an understatement) as to whether treatment somehow triggered an arthralgia or similar ailment that is not temporary. I have an appointment to see the oncologist in ten days. In the meantime, all his PA would say is that they have never had a patient with such a reaction to obinutuzumab or veneteclax. Has anyone heard of or experienced such a reaction after treatment with veneteclax or obinutuzumab? If so, did it go away eventually? I am generally very stoic with a high tolerance for pain but this has me rattled. So I would greatly appreciate any information or advice you can offer.
Thanks