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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.
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No I haven't heard and my doctor hasn't mentioned but thank you I'm definitely going to look at this. Can you share anything you have?
I have read that there are certain foods that can naturally affect platelets--either raise or lower them.. Several articles talk about the lowering effect of cranberry juice and some fruits such as strawberries or other berries. Have any of you seen similar studies posted or had discussions with your doctors about natural options along with baby aspirin and/or medication? Thanks so much!
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1 ReactionMy Naturopathic Physician suggested I see a Oncologist or Hemotologist in 2013 because my Platelets were increasing to 1.5 million. I started to see a local Onocologist and was told I have a JAK2 mutation and Polycythemia Vera. I started taking Anagrelide (stopped working), Hydroxyurea (bad side effects) and then Jackafi in August 2018. I was seeing my local oncologist about once a month with blood draws. In February 2019 when my white blood cells were increasing and platelets dropping I was referred to Seattle Cancer Care Alliance (SCCA). Dr Colin Godwin (SCCA:) told me I was in the early stages of Acute Leukemia. He said he would contact the Stem Cell Transplant Team to start looking for a match for me to get a stem cell transplant. My local oncologist put me back on Hydroxyurea to control the white blood cells. I met with a Transplant Team Doctor (SCCA) on Friday, March 15th and found that my brother is a 50% match and they will start looking for a 100% match for me. I will spend approximately 100 days in Seattle to go through the tests, chemotherapy and Stem Cell Transplant. I am 67 and since I want to live, I have elected to have the Stem Cell Transplant done. It is not always an easy recovery period but I hope to remain strong and survive.
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1 ReactionThank you for the information. I’ll pass along to my son, who is 46.
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1 ReactionHi @mcullen123 you may have noticed I moved your post to this existing discussion on Jak2 mutation so that you connect with others who have this mutation. Simply click VIEW & REPLY in your email notification to get to your post.
That must feel great to have the CML under control but frustrating that you now have Jak2. How long ago were you put on medication for this? When were you diagnosed?
Cml under control now have Jak2 2 mutation doctor put me on jakifi and on tasigna for Leukemia
Worried about having 2 diseases
I have had leukemia for 3 yrs before being diagnosed with Jak 2
Thank you very much, merci.
Hello, first I’m sorry if they are mistakes in the text since my first language is french.
I was diagnosed with a high platelets number aroun 2004. At that time, the doctor tought that it could be inflammatory problems or pills leading to this. My platelets went up very slowly from 400 000 to more then a million. Later, it went from hyper platelets to ET. Around 700 000, my hematologist puted me on aspirin. Around 2009 he took a piece of bone narrow for a Jak 2 test wich came back negative from the lab. Years later, the simple blood test came and I tested positive to the mutation on that blood test. After some reserch, I found out that around 2002, I started having skin itching like hell when coming out from a bath or shower, or doind sports while having transpiration. A study came years later saying that patients with ET or myelo decease were about 30% to have this problem.
2 years ago around Christmas I starded having headeachs all the time, so I started to panic. I asked my family md to have a blood test. I went from 750 000 to more then a million platelets count in 2 months. Had lots of tests done in neuro but all was good. Started pills for those headeachs and started Hydrea 500 once every 3 days. Then it went up and up and up like 112-112 then 121212 and 22222 so 2 per day everyday and 232 and now 3 a day to have platelets between 340 000 and 400 000, wish is what my hematologist is aming for.
Not long adter starting Hydrea, my skin rash coming from water or pursparation came to a stop.
It was really a nightmare all those years.
I am to looking the net to see if there a new research, but not much is going on.
I am 51 so found out around 2004 and starded Hydrea in 2016. It went up very very slowly.
Side effects of Hydrea on me is more or less fatigue. I go to the gym, sane there, a normal training take the energy as if I did a big one. But it is better to keep the shape.
If you have questions, don’t hesitate, I am new here from today. Hopes this helps.
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