Hello everyone. CLL Dx 2002, unmutated, Trisomy12, Notch 1. O+I 2 years, Off meds 2 years (heart surgery), WBC has been slowly rising ove4r the past 4 or 5 months, but I was never at MRD. A biopsy of a "rash" on my scalp shows Leukemia Cutis - most likely CLL related. Has anyone else had this? How was it treated?
THANK YOU SO MUCH!
why were you off meds so long and what meds were you on previously? I have similar markers to you and I’m on zanabrutanib. I take short drug holidays for surgeries one week prior and one week after but other than that, I stay on the medicine
I had heart surgery & multiple infections. Can't take blood thinners (afib/heart) with Ibrutinib. My CLL doc felt that if I did OK off the meds, I should stay off them until.......
The most current recommendations are along the lines of "treating the underlying disease."
ncbi.nlm.nih.gov/pmc/articl...
Depending on other signs/symptoms, you may want to consider restarting treatment. If it were me, I would want a bone marrow biopsy to determine my marrow infiltration. However, my variant has generally been more "in the marrow" before spilling into blood, and not a lot of nodal involvement.
If I had minimal marrow or nodal involvement, and it appeared that the CLL just happened to be in my skin, and that wasn't too annoying plus stayed small, I might hold off treatment 6 months or so. To see how/if things changed.
You may just choose no bone marrow biopsy, and start some kind of treatment. Or wait a bit, see if the area stays the same or continues to grow before deciding. If the area bothers you, consider treating sooner.
Could a few Rituximab infusions help?
Depending on markers and other test results, rituximab in conjunction with another drug may be used to treat the underlying CLL. Part of the problem, is rituximab itself can cause skin problems. Since it's not a fully humanized monoclonal antibody, allergenic skin reactions are among the listed side effects.
My neighbor with CLL got a generalized rash after a few infusions, but it did bring his platelets back up, his CLL was severely affecting that cell line.
rituxan.com/nhl/side-effect...
dermnetnz.org/topics/rituximab
The recommended treatment for leukemia cutis is "treat the CLL". So the doc may use it. Possibly along with venetoclax. Or venetoclax monotherapy, if the doublet of O&I treatment caused neutropenia such that infections were a problem. IDK the cardiac risk so can't comment on if a doc may want to consider a different BTK inhibitor.
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