I was diagnosed with CLL in 2002 & been on wait & watch until recently.
Treatment with FCR is imminent but only after a severe skin infection has cleared up. Dermatologist took 2 biopsies which the Pathologist reported skin infection/rash was Hypersensitive Dermatitis.
I had an IV when I had a CT scan & the thought is this could be a cause. I have had three IVIg infusions, once a month, & the rash started to appear the day before my third infusion & 2 weeks after the CT scan. The specialists seem to have ruled out the IVIg as a cause & because of the time this infection has been going on, 2.5 months, I wonder if the CLL is the cause.
I am seeing Haematologist again in a few weeks and would be interested in any info people may have re this.
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Happy-Daze
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I had FCR 6 years ago. I was told since I was 13q mutated & under 65, it was my best choice. I got a port & 3 months into treatment I was tested & in remission. Didn't have to continue. I see you are 68. Did they offer any other treatment in your country?
I am also CLL Mutated & the specialists seem to think this is a good treatment option for me. I was accepted onto a new drug trial but because of the skin infection I was ruled out.
You've had a very long time in watch and wait, which fits with being IGHV mutated. I hope you end up in the ~50% of those who have had remissions last over 23 years healthunlocked.com/cllsuppo...
I began experiencing skin infections after 10 years in watch and wait. My CLL specialist referred me to a dermatologist and infectious diseases specialist. They concurred that it was my lowered immunity due to my CLL lowering my IgA. The recommended chlorhexidine wash dealt with the bacterial infections and I haven’t had trouble since, probably because treatment helped my neutrophil count.
Diagnosed with cll 10 years ago. W&w for 6.5 years. On Acalabrutinib and SCIG for last 4 years. Developed hypersensitive skin in January of this year out of the blue with a severe rash on arms and legs - nothing seemed to make it better. Cll specialist did not think it was the cll, Acal or SCIG. I reviewed what changed this year. Only thing new was a fairly heavy iron supplement to help nudge up my hemoglobin count. I stopped taking the supplements and the rash slowly disappeared
My dermatologist tends to agree that it was likely the supplement. According to her, anything can set off extreme skin sensitivity especially in those with a compromised immunity.
If you are on IVIG, infection risk is heightened. I am hopefully years behind you, but as soon as I have the slightest indication of a skin infection, I immediately disinfect and then rub antibiotic ointment on the area. So far this stopped every infection in its tracks within 24 hours.
FWIW, "hypersensitive dermatitis" is not necessarily an infection. It means a skin inflammation (dermatitis) that looks like some sort of allergic type reaction (hypersensitive). So while an infection may cause a hypersensitive dermatitis, not all causes of hypersensitive dermatitis are infection. Wasn't there a bacteria or fungus listed as a known or suspected infectious agent? I am a bit confused at a pathology report saying only "hypersensitive dermatitis" yet you are being told you have an infection.
Regardless, if there is any skin cracking or scratches or open sores, or other rashes, starting treatment means with even more suppressed immunity from the CLL drugs, one is at a higher risk for infection. Even if the skin is intact, if any kind of infection is suspected, it's smarter to wait until it clears more.
CLL has been known to infiltrate skin, as well as other organs. Considering how much blood gets into virtually every part of our body, it's not surprising that CLL is occasionally able to infiltrate various other tissues.
The reason I am wondering if your rash is possibly not an infection, is that when skin biopsies are sent, the results will say if an infection is present. Like I had 2 biopsies sent out once, and the results were eczematous lesions with MRSA in one and eczematous lesions with Candida in another.
But if you are having skin issues, and the biopsy isn't saying there is CLL in the skin, it's prudent to clear up "whatever it is" before starting cancer treatment. As opposed to a biopsy saying there are "leukemic infiltrates", which would be CLL & wouldn't go away until the CLL got treated.
Thanks for your thoughts. Will follow up on the Dermatology report & see if I can get more in depth information. Agree & am aware of this skin disorder needing to be cleared up before treatment starts. Saw Dermatologist a few hours ago & have been prescribed Prednisone - just a short course.
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