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CAR-T cell Therapy: Joint and muscle pain
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Aug 9 9:26am | Replies (46)Comment receiving replies
Thanks for responding. Her neutropenia is not severe with Neutrophils running in recent months in the range of 600 to 900 and once at 1100 since having CAR-T on 6/26/23. WBC is fluctuating around 1.4 to1 .6 or so in recent months. While all 3 of her oncologists (original diagnosis and treatment oncologist where we summer, local oncologist where we winter, and CAR-T specialist) seem surprised she hasn't rebounded more they have not been all that worried about the levels as long as she's on a prophylactic regimens of anti-viral, anti-fungal, and anti-biotic meds and haven't been inclined to want to introduce a growth factor at this stage as it may not be sustainable and as we would understand might encourage other than neutrophil growth and expansion, i.e., don't want to risk encouraging anything bad benefiting from a growth factor. Position has been to allow her natural system do it's thing to bring these numbers back into line. She has no prior history of autoimmune issues but did have 6 rounds of R-CHOP, had a clean PET/CT, clean bone marrow biopsy, 18 fractions of consolidative radiation of a remaining small mesentric mass, then on 3/1/23 roughly three months post prior treatments showed DLBCL activity in 2 new areas, another bone marrow biopsy showing no involvement, 3 rounds of polivy/rituximab as a bridge which resolved all signs of disease, a clean PET/CT before the lymphodepletion and 6/26/23 CAR-T so her immune system has taken a beating but not necessarily worse that probably many experience. All her other blood count levels have responded well and basic Rheumatoid Factor and IgG parameters haven't suggested any apparent issues although maybe more in depth testing might be on the horizon.
Replies to "Thanks for responding. Her neutropenia is not severe with Neutrophils running in recent months in the..."
Hello Greg - I underwent Car T therapy in 2018, I am currently 68 years old. The therapy was a total god send for me. My oncologist has told me that I am totally immune compromised and that is the way it will be for me, this can only be mitigated with IVIG infusions which I struggle with, as a result I have not have had and infusion to boost my immunity for more that 2 years. I have had countless aches and pains much like your wife is experiencing, I have been able to mitigate them by changing my diet, practicing a rigorous stretching routine that I have implemented. Even with that, I still experience muscle spasms, and neuropathy quit regularly. It took at least 3 years for me to get the joint pain and spasms under control. I have been fortunate in that I was able to get to this stage without any medication. My experience has been is that there is no magic fix for me. (Saying that, Car T was a magic fix) take care.
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Greg -- I certainly can sympathize with your wife's leg cramps. I started have leg/foot cramps about 3-4 months out from CAR-T, received CAR-T 12/28/22. They can be quite painful. My WBC has not recovered fully, I'm usually between 3.0-3.8. I'll be surprised if I ever reach 4.0, my oncologist is not concerned and says my immune will not be as robust as others. He says the neutrophils are more important. After several short acting injections to boost my neutrophils I was given 2 or 3 longer lasting injections and those seemed to do the job at raising them to a healthier level. I should mention before CAR-T I had to have a round of Polatuzmab, a chemo, to push back the aggressive DLBCL so that I could make it to prep for CAR-T. Luckily they were able to get enough healthy cells. I am on daily Valtrex for shingles and an anti fungal 3x a week, both for a year. I did have a breakthrough singles attack, i think because it was a very stressful time at work. My dermatologist put me on a gram of Valtrex and Gabapentin daily, my shingles was not clearing up and itching all the time. Derm said damaged nerves. Since I've been on Gabapentin I have not had any severe cramping. When I do feel the mild cramping in my feet i drink tonic water with quinine. It seems to help. What would keep me awake or have non restful sleep was the bubbly sensation in my lower legs. Most of the time I could feel a charlie horse coming on so I would immediately stand and stretch. I have not found exercise helpful.