@pps26

My diagnosis was quite a shock to me, too. I have ET with a JAK2 gene mutation, no symptoms of which I was aware other than abnormal bloodwork. I'm not used to having anything really wrong with my health, but I try to count my many blessings.

I don't even take a Tylenol, so when my platelet count got above 600k and I had to start on HU I wasn't thrilled to say the least. I expressed my concerns to my oncologist and he assured me that HU, while a chemo capsule, wouldn't make all my hair fall out and wouldn't make me throw up. He said not to let the "chemo" name scare me (but honestly it still did!). But I take it, because I don't want deadly or disabling blood clots that could cause strokes and heart attacks, which because of age and family history I was already at increased risk of having. I am thankful there are medicines that can manage this blood disease. I'm also on two low-dose aspirins a day. I am now 79, btw. I feel very blessed that I'm not suffering any really life-altering side effects so far from either the ET or the medication for it, although at 79 I don't have the stamina that I did when I was younger. That's probably normal for many of us.

I also asked him if I could start at a low dose. He told me 500mg/day IS a low dose and that some people take multiple doses of it daily especially for other conditions.

At my last checkup I was having some tingling in my feet, calves, hands, and forearms (mild neuropathy), so my HU was reduced from 500mg daily everyday to only five days a week M-
F. My platelet count was in the low 200s at the time so we had some room to play with. Since reducing the HU dosage, the neuropathy is much better. I'm also now taking an under-the-tongue vitamin B12 supplement which might be one reason it's better. A B12 deficiency can also cause neuropathy. There can be quite a few different causes, and HU doesn't cause it in most people. It's only a "possible" side effect.

As you already are having tingling before starting HU, you might want to ask your doctor if there is anything you can do to help with the tingling or neuropathy. Most of my friends have to take B12 shots because their B12 levels are low.

As a couple of others have noted, HU is not like the strong chemotherapy that is given temporarily to patients with other more deadly types of cancers. It's a very mild chemo drug and even children routinely take it for sickle cell disease. We with ET need it to control our abnormal and dangerous runaway platelet production. Many people have taken HU for decades (unlike the strong chemo for other cancers). So please be reassured that thankfully it's not like the chemo your sister had to have.

Prayers and best wishes for a good outcome in controlling this blood disease we have.