My husband was diagnosed with CLL Nov 24….. all very new to me.
This was as a result of a cancerous patch of skin/tissue adjacent to his nose and one on his chest removed and then having a blood test which confirmed CLL. For many years he has had small patches of dry aggravated skin appear on his face and left hand. The one on the back of his hand never seems to heal, it scabs over looks angry, bleeds and starts all over again.
I am just wondering if this is related to having CLL.
Today I managed to drag him to the doctors to check the status of his vaccinations. Thank you for the information and advice, really appreciated, he is having a shingles vaccine next week.
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sunshine-happy
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It could be related, I read about lots of skin problems with CLL. We are like 8 times more likely to develop skin cancer than healthy folks. Anything suspicious - have it checked out right away. Oh, and if you lock your post, you should get more answers.
Before my diagnosis I had been developing odd skin conditions. It makes sense intuitively, our skin is the largest organ that has the first role in immune protection.
Skin changes can occur in 25-40% of CLL patients based on review articles - 80% are termed "non-specific" without CLL cells present in the biopsy but still probably associated with CLL. Nodules or other skin lesions with CLL cells present are rare and labeled as "specific" for CLL. Direct treatment of involved skin is usually not effective (steroid creams don't work).
Your dermatologist will continue monitoring for skin cancers and biopsy suspicious or non-healing areas as needed. CLL associated skin changes don't generally affect prognosis and will often resolve/improve with treatment for CLL when or if required in the future.
These are general comments - there are exceptions and limited data to inform decisions. Hope this helps some.
You should look into taking nicotinamide pills for prevention of skin cancers other than melanoma. My wife's doctor recommended it for her, and I asked my dermatologist. He agreed and recommended how much I should take. It seems to be helping both of us after about one year. I am a CLL patient currently in remission.
I am not a doctor. Please consult yours before adding any medications or supplements.
I second your advice to check with the doctor first.
Nicotinamide appears to be largely well tolerated (11) (12) (13). However nausea, vomiting, and other gastrointestinal symptoms (29), as well as headache, fatigue, dizziness (9) and liver toxicity (19) have been associated with high oral doses.
Increased risk for thrombocytopenia has been noted in a meta-analysis of RCTs in hemodialysis patients with the use of nicotinamide (23).
Increased risk of myopathy and rhabdomyolysis were reported in a review of patients on statins with nicotinamide use (30).
Increased incident of major adverse cardiovascular events (MACE) in excess niacin supplementation (31). Providers will need to reassess risk and benefits in patient predisposed to cardiovascular conditions before prescribing niacin for low plasma HDL-cholesterol or high plasma triglyceride levels (32). [mskcc.org/cancer-care/integ...]
Yes, clinical studies overall have found Nicotinamide well tolerated - For people in good health. Unfortunately, as we age and for a large part that's when the CLL appears, we've developed co-morbidities. So, in this case listing the problems experienced with this supplement one may possibly have to consult with a cardiologist, ophthalmologist, and nephrologist.
So, be alert to all your health problems before following a suggestion from only one specialist perhaps a well rounded internist as your primary care doctor would be able to double check against other vulnerabilities.
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