← Return to Had CLL for about 2 years, Dr is now thinking of treatment

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@loribmt

Hi @artymarty, welcome to Connect. It’s not as cool as the old treehouse club when we were kids but having a blood cancer gets you an exclusive membership…a dubious distinction to be sure. ☺️ I’m a member myself and though I wish I hadn’t had a serious blood cancer, (in remission) I have met the most amazing people in this group.

As you’ve found out with your CLL/SLL condition there often are no treatments early on in the game and only monitoring of routine labs is necessary. Now you’ve been diagnosed with a new player, the JAK2 mutation which is causing your bone marrow to churn out too many platelets in a condition called Thrombocytosis. There are a number of members who have ET/JAK2 mutation and have shared their stories and experiences with others. Here is one of the discussions you might helpful:

~Essential Thrombocytosis symptoms
https://connect.mayoclinic.org/discussion/essential-thrombocytosis-symptoms/
With @lynn22 @edgy @sandy1959 @sregiani

Here’s an article from one of my favorite sources on the significance of the JAK2 gene and what changes the mutation can bring about. https://www.verywellhealth.com/jak2-mutation-5217909

There are many other references to ET and JAK2 mutation caused conditions in the forum. You can type in either of those two words in the search bar above and it will bring up a large list of relevant conversations for you.

With your newly diagnosed JAK2 mutation and your body making too many platelets, are you now having to start treatment?

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Replies to "Hi @artymarty, welcome to Connect. It’s not as cool as the old treehouse club when we..."

Thanks @loribmt. thanks for your reply. Very helpful. I appreciated the references. I have one more ultrasound sound to complete ( abdomen) this week, then see my oncologist/hematologist Aug 22. So, will see what, if any, she thinks will be helpful. I am already on xarelto (5mg/day) and baby aspirin due to a recent peripheral artery disease. All very puzzling, as I keep pretty fit, eat pretty well, so I guess the profile I fit is age ( just turned 80) and being female. Anyhow, doing my best to keep positive and figure out best ways to keep the various disorders under some control. Will post again once I have the Aug 22 conversation. Thanks.