Anyone living with Essential Thrombocythemia with JAK2?

Hi,
Thanks, I am working with an Oncologist in Central MN who tested for JAK2
I got a second opinion and the thorough work done by the Mayo Clinic figured out the years as there were a few different Clinics I had been to over the years. That’s good news as it is progressing slowly. Since dx I have become very focused on diet and exercise, and I have a positive outlook for the future.
I am curious about other people’s journeys with hydroxyurea as that is my next step once I reach a certain platelet count.
Thanks!
NP

Hello, I have been taking HU for about 5 months for my ET with the Jak2 gene and I'm wondering if anyone else is having sores on their scalp as a side effect of the drug? Twice in the 5 months I have taken the drug I have gotten sores on my scalp ( along with thinning hair ) but it's unusual to get sores on my scalp. I've made an appointment with my dermatologist just to cover all my bases, but just wanted to ask if anyone else has experienced this.
Thank you
Connie

Hi,
Thanks, I am working with an Oncologist in Central MN who tested for JAK2
I got a second opinion and the thorough work done by the Mayo Clinic figured out the years as there were a few different Clinics I had been to over the years. That’s good news as it is progressing slowly. Since dx I have become very focused on diet and exercise, and I have a positive outlook for the future.
I am curious about other people’s journeys with hydroxyurea as that is my next step once I reach a certain platelet count.
Thanks!
NP

I am a very active 80 year old female former personal trainer who was diagnosed with ET JAK2 about one year ago. I have been on 500 HU, aspirin and have had 3 blood dumps. My platelets were 640 and now in high 400 range. I have never had any symptoms but my diagnosis was found through a CBC draw. Looking back through my blood tests over the years I’m sure I had this blood disorder at least for the last 10 years. My only current symptoms of this blood disorder are dry skin, thinning and more briddle hair strands and I do get tired in the late afternoon. I usually take a 45 minute nap around 4 in the afternoon which seems helpful. I get at least 45 minutes of cardio 5 days a week and 3 days of strength training. This helps so much with my upbeat mood. It’s so important to keep moving. The patients with this disorder should be so thankful that our diagnosis can be managed by this chemo pill. I’ll take thinning hair and general skin dryness anyday when I continually hear about these other individuals going through much worse cancers.

@przybillan I think most people delay HU if they can because it can lose effectiveness over time and there can be side effects with long term use. I went on it as soon as I was diagnosed. I was 65, my platelets were increasing more rapidly and I had some symptoms. The HU has controlled my platelets and reduced the more troublesome symptoms. The baby asprin helped with symptoms too.

@przybillan

Each of us experiences ET differently. BRAVA to you for seeking a second opinion, and learning as much as you can about ET.

Your oncologist -- not the internet or me! -- is your best guide for the treatment decisions that will work best for you.

As you probably know, hydroxyurea (HU) has been in wide use for ET and other MPNs, as well as sickle cell anemia, for decades.

My oncologist recommended HU upon my ET diagnosis at age 69, three years ago. My weekly dose is now 15 500mg capsules. The only problems I've had with HU are dry skin and occasional constipation. Since it's greatly relieved the horrible headaches and exhaustion of ET, for me HU has been a life saver.

I'm so glad you've found this forum, Nancy! Here you'll meet ETrs from all over the world. We know what you're going through, and will try our best to help.

@djlom15
Thanks for sharing. I am impressed with your exercise routine, you, go girl!!
Touche' if you have to get cancer........ My numbers are up and down in the 500s, I was told when I get over 600 is when they will give me HU, why the blood dumps?