Connect
JAK2 Mutation - Effects and Questions
Have JAK2 mutation verified twice; one year apart and from different labs. As I understand, it may cause polycythemia vera, essential thrombocytosis, or leukemia. My hematologist has not provided any real info on this mutation so I've been researching via internet. I knew leukemia is cancer but was disappointed to find out today that the other 2 are blood cancers as well. I have been seeing a hematologist every 3 mos. about this since my 2nd blood clotting event in 09/2016. To date, all my blood factors have been in the normal range. Here are some of my questions: 1. Is it typical to verify this mutation well before it triggers one of these diseases? 2. I know early detection of cancer can be a real plus, but is there any research or experience that supports proactive steps that can be taken to deter the onset of any of these possibilities? 3. With polycythemia vera and essential thrombocytosis, is blood letting the primary treatment? If so, can the blood be donated? 4. Since none of my blood factors have ever been out of the normal range to date, no specific result of the JAK2 mutation has raised its ugly head. Is this normal? I'm not typically a worrier. In fact, I do really well with things like this once I know what I am dealing with. Information becomes my sword which allows me to take worry and nip it in the bud.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I have been on HU for nearly 28 years. I have had some issues, but nothing really that wouldn't come along with aging anyway. I started HU when I was 39 and still take 500 mg/day plus an 81 mg aspirin. It's kept me going!
-
Like -
Helpful -
Hug
1 ReactionMy daughter was diagnosed wit JAK2 October 2020
She hasn’t had any clotting yet so praying they got it before it started. She did have IV Iron 5 times since and she takes aspirin everyday to prevent clotting. She sees her oncologist in March and we’re hoping her blood is flowing freely. Prayers for you to be well.
I traveled as usual and flew places in 2020 and enjoyed many wonderful experiences with family and friends. I also had COVID in November, which I contracted from my 85-yr-old mom when she was released into my care from a rehab facility, not knowing she had COVID! I had an extremely mild case, as did my mom and husband. Over the 30 years I've had JAK2+ ET and taken hydrea, I've chosen to live as normal and not in a state of fear and trepidation. Some countries won't let you in right now with COVID restrictions, but I'm hoping for Iceland this summer! The more you worry and fret about this, the worse it will feel. So go on and live your lives! Could be much worse!
-
Like -
Helpful -
Hug
3 ReactionsI have JAK2+ ET and I've never had side effects from Hydrea in the 30 years I've taken it. It has only improved my health, so don't assume it will make you feel worse. For me, it only made me feel better!
-
Like -
Helpful -
Hug
2 ReactionsI have had ET and taken hydrea for nearly 30 years now. I am currently 66 and found out somewhere along the way that I also have the JAK2 mutation. Very few people I've known throughout my lifetime even know I have this condition, as I choose to take my meds, get quarterly CBCs, consult with my hematologist and live life as fully as possible! No worries! Take courage, everyone! There are WAY worse things than this in life 🙂 I rarely even think about it!
-
Like -
Helpful -
Hug
2 ReactionsHi @nolan, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about the JAK2 (Janus kinase 2) gene mutation. I did this so you can connect with other members like @wa34937 @mjpm2406 @godschild56 @barbie75 and others.
Alterations in the JAK2 gene can cause conditions such as Crohn disease, essential thrombocythemia, polycythemia vera, primary myelofibrosis and others.
You mention that you've been prescribed hydroxyurea (Hydrea), which can cause the side effects that you describe like burning in hands and feet; leg wounds or ulcers; pain, itching, redness, swelling, or blisters on the skin; and mouth ulcers. Nolan, have you been diagnosed with essential thrombocythemia (ET) or polycythemia vera?
I was diagnosed with Jak2 in 2019 and have been taking the hydra drug and I experience several side effects. Mouth ulcers, skin sores and irritations. Place me on antiviral meds to try to help prevent but still get these. I am experiencing extreme burning in my toes that is worsening. Is there anyone out there who has Experienced the burning in the toes or feet and what has been used to treat it?
Hello, was diagnosed with PV due to very high platelet count that led to 2 mild strokes. Am very healthy person overall and surprised that I had 2 mild strokes which lead to PV diagnosis. My main issues were extreme fatigue and an itchy back. Am now doing fine taking1 hydreau pill day and platelets in normal range. Did anyone else have a stroke as a result of undiagnosed high platelet count?
I have just been diagnosed, ET with JAK2 mutation....he wants me to start on Hydrea...it is reassuring that you are not having major side effect issues with it....I already have several symptoms of the disease and can't figure out why i would be taking a medicine that will not help get rid of the symptoms, but could increase them??? very confusing.....
I assume that all if us who have blood cancers have immune deficiencies so traveling to any area that has active outbreaks of the coronavirus isn't a good idea. As I understand it, older people with underlying health issues are the people who are most likely to succumb to the coronavirus or the Type B flu if not inoculated. Of course traveling on a plane places you in close quarters with other passengers and increases the likelihood if exposure to all kinds of nasty things. We're scheduled to go to Northern Italy in late June. Not sure if that trip will be canceled but it doesn't look good at the moment.