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Starting 17th year with ET. What's ahead?

Blood Cancers & Disorders | Last Active: Jan 19 4:08pm | Replies (52)

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@nohrt4me

Yes, fine that comments zig-zag in the ways most people need/want them to. I know there is an intense need for info when people are first diagnosed.

But I think there is also a need for sharing among patients aging with chronic cancers that were diagnosed years ago. I have a host of thyroid, skin rash, erythema, and dental issues that have worsened in the last couple of years, and accelerated in just a few months. I suspect that the ET and possibly the meds play a part, but when you ask the specialists about it, most have never even heard of ET, and they are VERY quick to dismiss it as a factor and just start piling on more meds.

And the time and expense of seeing umpteen specialists. Ye gods! When do I get my hair done much less afford coffee and chocolate!

I need to get some answers for myself. If I ever find them, I will report back.

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Replies to "Yes, fine that comments zig-zag in the ways most people need/want them to. I know there..."

It is doubly unfair to get cancer and then to have to fight for the care we need.

Would his medical license be revoked if a doctor said: I don't know, but I'll educate myself about this because I want to help you?

Instead they brush aside our questions.

It makes me want to scream.

Anything you learn and wish to share will be greatly appreciated, nohrt4me.