ET with Jak2 and allergies/fatigue

It is hard to get a blood cancer diagnosis. Give yourself time and space to grieve the person you were before. It is hard to get used to your “new normal”. People can have the same diagnosis, but experience different symptoms and different reactions to the treatments which can be confusing and frustrating. Don’t be afraid to try the treatments and advocate for other ones when you need to. Fatigue is a very common effect of MPNs the treatments do not always alleviate fatigue either. So sometimes you have to adopt lifestyle changes that help you cope with it. I wish you the best in your journey and I hope you find a treatment and lifestyle and diet changes that work for you. (I feel pretty good now and I have reduced my platelets from about 700,000 to 450,000. I started treatment with 500 mg daily HU because I was symptomatic, not because I was high risk. On HU for about 1.5 years).

It is challenging to manage a disease like ET. I was diagnosed in October, 2023. Mine was found while diagnosing colitis and Exocrine Pancreatic Insufficiency. The blood tests revealed platelets of 792,000. I was referred to a hematologist/oncologist (whom I adore!), had a bone marrow biopsy and started Hydroxyurea (HU) along with one low-dose aspirin daily. My platelets dropped quickly into the 200,000s and my HU dosing was changed to only 4 days a week with 3 days off. Yes, it's exhausting. All of my chronic diseases cause fatigue, and all the meds to manage them do so as well. At 71, I rest often, try to get enough sleep, and don't beat myself up when I am too tired to participate in an activity or event. The key is to do what you can and enjoy it, modify other activities if possible so as not to wear yourself out, and be kind to yourself.

Your platelets are not very high so I wouldn't think that would be the cause of your problems. I was on aspirin till my platelets went up to 1028. Im now on HU and doing ok. So don't be fearful about it. It may be a worry at the beginning but you will get used to it.

Have you tried Claratin or an antihistamine that does not cause drowsiness? ET causes excess histamine production, and if you are prone to seasonal allergies, ET makes them worse.

I do sympathize with your situation. Whatever upsets an important part of normal life for us can be worse than the actual disease. My ET came on at age 54 and affected how much energy I had to participate in my son's high school years. I am still beating myself up for that.

@mjervis thank you. Sadly my platelets have been high since as far back (that I can see) since 2005. It’s taken its toll because of it so for my body… this is high I’m told.

@nohrt4me yes. I’ve tried a significant amount of over the counter as well as Hollistic meds. I had my allergies managed fairly well until this summer and this summer it’s been a beast.

@sdcgcarroll I think everyone is different and this goes for both the disease and your reaction to treatment. I do hope you get the help you need

@eloise999
Words of wisdom, thanks.

@nohrt4me The world will beat you up enough, try not to do it to yourself----also message to myself.

@debhammel I have a few years on you (8 to be specific), and agree with all that you say. The trouble for me is that I am a stubborn, old woman who is used to being competent, and in charge. I am learning that aging is a series of losses, and as you say make peace with some of it. My problem is finding the line between "giving up" and moderating activities.