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@jerrlin

I was really surprised to find out that my primary doctor, dermatologist , ENT, eye doctor all knew quite a lot about the disease. I actually see 2 Hemotologist, oncologist as I live 6 months in Florida and 6 in Wisconsin. They both agree on my treatment. New normal is right. Do you ever have itching. ?

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Replies to "I was really surprised to find out that my primary doctor, dermatologist , ENT, eye doctor..."

Jerkin and everyone else, good morning,

Once in a while I do have some itching which I ignore, no scratching ever and no over the counter meds for this symptom. One thing I found that helped, well maybe a couple; I don't ever take a bath, I don't shower everyday instead I use a sponge bath and don't use anything on my skin with alcohol in it...In other words, if you use cream on your skin watch the ingredients..Other than my face I use aquaphor (advanced therapy ) it's thick but it truly works for me. when I had breast cancer they suggested I use it after radiation...So I went to it for my skin to avoid the itching before it starts. I use this for everything other than my face which I use cepaphil cream my dermatologist suggested it. I drink a good 90 oz of water each day which hydrates from the inside. and thins the blood both it's very effective. I stopped feeling sorry for myself and accepted my "new normal" as someone suggested on this site, it works..Trust me when I say I get this is difficult but manageable and we're going to live a long time with watchful care,,There are many out there much, much worse off then we are,,Hope some of this helps, don't be a stranger..We may have an orphan blood cancer but this site offers us a support system and I'm grateful for it.