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palmar-plantar erythrodysesthesia and ET
Oncology check-up today. Asked about red, hot palms and soles of feet. It's called palmar-plantar erythrodysesthesia (PPE). Yes, patients with ET notice it, but not much info on it. Supposedly facial flushing is not part of that syndrome, but when my hands flare, so does my face (have been diagnosed with rosacea) and sometimes scalp. Cold water compresses help.
Nurse said that ET patients fairly often report sensitivities to heat and cold, smells, and lotions, even some textiles. Seems to be poorly understood.
My skin is quite dry, and I have had good luck with Vanicream shampoo, conditioner, and lotion, which are unscented hypoallergenic products. I also use over the counter hydrocortisone cream occasionally.
PPE is a "nuisance" side effect that does not indicate disease progression, so your hemo may not be interested or too helpful about it. Onco nurse said that if what I was doing helped, go with that. Generally I have found my GP far better at dealing with this stuff.
I'm 70 yo, CALR+ x 15 years, on HU 500 mg + 3 extra MWF and baby aspirin.
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Were you started on that dose oh HU or was it increased gradually?
I was started on 500 MG per day. It took me about a month and a half to adjust to that then it was increased to 1000 MG on weekends at 500 during the week. This really threw me off-balance – – severe visual disturbances, very sore tongue and itching, so was reduced back to the original dose.
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2 ReactionsI was started on 500 mg per day, then up to three extra per week after a year. Been on that dose x 6 years, no problems. I don't know if the PPE is a function of long-term HU use or platelet spikes (I go above 500 on occasion, but usually between 430 and 475).
Hematologists basically only care about your blood numbers and anything that might be life-threatening. This is different if you are seeing an MPN specialist; they like to get into the weeds. But regional oncology clinics usually have overworked staff caring for too many acutely ill patients, and they can be dismissive of people with nuisance complaints.
At least the nurse didn't tell me it was all in my head. The erythema and itching problems are in the literature for MPN patients. But she didn't bother noting the problem in the notes, just said that "patient states she feels fine." Grrr.
Ugh, sorry for venting.
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6 ReactionsI say THANK YOU for venting!
Weird cancer
+ busy/ignorant medical "care givers"
= FRUSTRATION!
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