Ann, thank you very much for sharing. She had the Polatuzamab Ruxience as a bridging immunotherapy before her CAR-T and which worked very well but is just not sustainable with aggressive or refractory DLBCL that she also has. My wife's aches and pains seem more to be joint and muscular in the hips and especially shoulders. Her 100 day PET/CT showed activity in the right hip area which wasn't presenting any discomfort at the time whereas as other painful areas did not light up. My understanding would be that inflammation can light up on a PET/CT as those areas can absorb the FDG readily as do clustering cancer cells. Follow-up MRI of the right hip was reported as a 'tear' but subsequent review by an Orthopedic specialist showed it was more like a strain or pull than anything torn. Shoulder pain wasn't bad then but then worsened and another trip to the Orthopedist who took an x-ray and determined no joint or bone issues and through manipulation was inclined to think it might be a rotator cuff issue. We've seen others report the joint/muscular issues as having been diagnosed as rotator cuff issues and such. Would need an MRI to confirm but since her immune system is compromised, surgery at this early stage would not be wise so he wasn't inclined to push doing the MRI yet and instead provided PT exercises she could do to strengthen the muscles and suggested a cortocosteroid shot as an interim therapy. She had the shot yesterday and we're waiting to see if it kicks in any relief. In the meantime, while most of her labs were trending in the right direct and in many cases now normal except for WBC and neutrophils which have been hovering around 1.4-1.6 and .6-.9 (or 600-900 depending on how one characterizes them) respectfully, a lot took a pretty good hit this week. She's been dealing with periodic bouts of what I'd describe as GI storms so along with the joint and muscle issues, probably all inflammatory in nature with the WBC and neutrophils and overall immune system still trying to figure itself out. They harvested a nice crop of T cells and apparently had a good batch of CAR-T cells they put back into her. Maybe they were too good and plentiful and having gone into CAR-T with a very low tumor burden, they are running amuck. Her doctors are not inclined to introduce any colony growth stimulating factors as her levels are not real severe and here IgG is holding it's own for now so she's not in need of any IVIG treatment. Of course, all these things are lingering and so stress and anxiety levels are over the top which doesn't help one's immune system or tendency for inflammation. Fortunately, no other immune system flare-ups like you've experienced but the tonic water idea is interesting. At this point, we're experimenting with all kinds of ways of easing inflammation both pharmacological but also dietary as she seems to be caught in a vicious cycle of being immune compromised, prone to inflammatory issues, and
exhibiting uncooperative blood levels. So breaking one of them or reducing their influence might be enough to give her body a chance to fight back better. Otherwise, she's got great energy and able to do most of what she did before CAR-T just is somewhat living in an isolated bubble with a lot of discomfort.