Anyone living with Essential Thrombocythemia with JAK2?

@dewz13 Donation was something Mom had said she wanted to do. But instead of saying prayers at bedside and holding her hand as she died, I spent nearly an hour answering detailed questions about her health so that the donation team could determine which organs they might use.

Lesson there is that your family needs to know that you have ET and any other ailments. They may also not be able to say goodbye to you as they wish.

I am pretty tough, but I had nightmares for months about the donation process. I've told my son and husband no donation for my organs because of the ET, and I am glad to spare them what I experienced.

Hi Jane. Oh ok thank You.

I just discovered this forum, and find it gives me so much information. I have ET. I have been on HU for about 19
years. Recently I have been dealing with an ulcer on my ankle that isn't healing, which I understand is a side-effect. My dr now wants me to stop the HU and start on interferon injections. Has anyone else had this experience? I do not want to start this new treatment, but unsure of what to do. I would appreciate any suggestions or options. Thank you for sharing.

Hi @sckf Unfortunately, leg ulcers can be a potential side effect from HU for some longer term patients. Not everyone has this happen but when it does, the ulcers may be diffuclt to heal. For that reason doctors may opt to switch treatment or lower dosages in order to help the lesions to heal.

HU has been a front-line medication for years for diseases such as ET, PV and other MPNs (myeloproliferative neoplasms). It’s effective and cost effective. However, there are other drugs which are also used to treat MPN’s. Here are the most common: Besremi, Jakafi, Anagrelide and Pegasys (peginterferon alfa-2a) Each has a different mechanism of action.
The goal right now is to allow your skin to heal to prevent infection. I know from my own experience having to switch drugs that have worked for years to something new can be stressful. But you have a rather nasty complication brewing with your current drug and that takes precedence for the change.

In order that you may learn a little more about HU leg ulcers I found this article for you: From Dermnetnz.org. https://dermnetnz.org/topics/hydroxyurea-induced-cutaneous-ulcer

I also found some discussions with other members who have switched from HU to Pegasys. (That is one of the more common names for the interferon injections. Not sure which one your doctor will be recommending).

@chocolategirl posted this dicussion several months ago:
https://connect.mayoclinic.org/discussion/anyone-have-et-and-on-pegasys-instead-of-hydroxyurea/
More can be found with the results of this search. Lots of mentions of Pegasys https://connect.mayoclinic.org/search/

I’m sure having this ankle ulcer that won’t heal is pretty troublesome. Wouldn’t it be nice if you were able to have that heal again?

I know we can't donate blood or blood products

@sckf
Has your doctor looked into whether there might be any underlying vascular or circulation issues contributing to the ulcer?

I have ET and also recurring melanoma and breast cancer 13 years ago. I would be interested to know if other ET sufferers have had other cancers too.

I am really appreciative of this group. I know we have all had long journeys and it’s just overwhelming.

@loribmt

Yes we are waiting to
Hear back from them.
Any tips.

@janemc you have brought me to tears. I really appreciate all the support that is here on this site. It’s been incredible to be a part of this so far. I’m hoping I could be just as supportive. Once I learn more about the Mayo Clinic and what happens there I will detail it here for anyone else who might need it