Newly diagnosed with ET

I am so sorry you received confirmation of this condition after your husband of 57 years had died. My condolences for the loss of such a long term partnership, during which it seems you may have been acting as carer for some considerable time.

I wonder how you are getting on with your medication? I hope you will find it is mostly trouble free?

I am a year older than you, and have been on Hydroxycarbamide for Essential thrombocythemia (ET) for about 3 years. I have adjusted reasonably well to being on medication, although I made some adjustments to ease my path. I drink 2 litres of water daily, and I gather that may be helpful in preventing ulcers. I also found that if I took the tablets in the morning or at lunch time I would need to sleep for some time soon after, so I always take them after my evening meal. (The one and only time I took them after lunch, I had to go to sleep half an hour later, and I slept without moving for a full 2 hours. Not such a good idea if I were needing to drive!) The upside for me is that I sleep pretty heavily most nights. I decided to take after food as I figured it may be best, in the name of ulcer prevention, that the cytotoxic tablet did not lie directly on the stomach lining. There are no official instructions as to when the tablets need be taken, but I didn’t’t want to risk that.

As I am an artist, I was not keen to have the side effect of neuropathy. However, after about 2 years I did begin to have tingling and some numbness in my hands. For the moment this is not detrimental to painting, but may well be. I have been doing Taichi hand exercises, and I am surprised that this has been a great help in reducing the effects, so I will continue with these.

I do wish you all the very best as you adjust to the loss of your husband, and the adjust to the chemo. I am glad you have a supportive family and good supportive friends to help you through both of these things.

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