Essential Thrombocythemia: Making treatment decisions

A gentle reminder than taking HU makes us more vulnerable to skin cancers . . . . slather on the mineral-based sunscreen!

@jag11, for others reading your post I thought I would spell out PNH. PNH stands for paroxysmal nocturnal hemoglobinuria, a condition that causes red blood cells to be destroyed by the immune system.

It's incredibly helpful, as well as extremely encouraging, to read the experiences of others!

Welcome @ksyren! We’re all about hope here in Connect. It is so comforting to know others have a similar conditon and that you can speak with them about their experiences first hand.
Were you diagnosed with Essential Thrombocythemia (ET)? Are you on any current treatment to help lower you excess platelet levels?

Hi, I have had Essential Thrombocythemia for over 15 years. I was on Anagrelide, and this kept my platelet levels manageable. If I forgot to take a tablet which I did when I went on holiday once, my levels shot back up. However, once I was back on track, they became manageable again. Recently I had to have a bone marrow test, which showed myelofibrosis, but not all results back until 8th. Not sure how to take this. My new hematologist was very surprised that I had not previously had a bone marrow test done. Waiting for answers is hard.

Waiting for answers for test results is hard! The longer we have to wait for news, the anxiety and uncertainty just keeps growing, doesn’t it? In the forum we have a name for that…scanxiety. Though you’re not waiting for scan results, the anxiety is the same for bone marrow biopsy (BMBX) results. I’ve been there many times and even when I’m not anticipating any chances, until I get the ‘all clear’ I’m antsy.

One suggestion is to not look at the results on your patient portal ahead of time. I know it’s not easy to do! But from experience, there’s often terminology or result content that can be misinterpreted and not necessarily mean anything is amiss.
Were you having a change in symptoms that prompted the BMBX?

Scan-xiety…waiting for test and imaging

Yes, JAK2 ET. After experiencing shortness of breath (my only symptom), and some alarming blood work, my primary ordered a CT Scan which reviewed multiply pulmonary embolisms. Once resolved (2 months), a bone marrow aspiration and biopsy confirmed my hematologist's diagnosis. My platelets have range from mid 500s to mid 600s. Have been on Eliquis since the embolisms. I'm currently on 500 MG HU 3 times a week (2nd week). I was in processing of switching oncologists so haven't had blood work since taking the HU. The two doctors had differing ideas about treatment with my new doc being more conservative and having a good deal of experience with this disorder. I will know where we are in a couple of weeks. I'm still learning what are side effects, but so far very manageable.

I couldn't get my Anagralide through hospital was going to cost the earth to get through normal chemist. My haematologist wasn't available saw current haematologist who was shocked I had not had a Bone Marrow test done ever. Hence waiting for results in 5 days. Possibly myelofibrosis from what he has already seen yes waiting is making me worry.

You've been through a lot. You're taking good steps! Every dose of HU and Eliquis is helping you.

And finding an MPN specialist will be great too.

As you probably already know by now, HU makes our skin more vulnerable to sun damage. And it lowers our immune response. I wear a sun hat anytime I have to be outside, even when driving. And in busy indoor places, I wear a mask.

Please keep us posted -- we're rooting for you!

I am so sorry for what you're going through.

After braving meeting the challenge of ET for 15 years, now you're facing new questions. Not fair!

Waiting for information is awful. Please remember, we're with you in spirit, every step of the way.