JAK2 Mutation - Effects and Questions

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.

Welcome to Connect, @donnaclabaugh. I see that you wanted to post a link to Voices of MPN. New members cannot post web links for a few days. We do this to protect the community from spammers, people who join only to post links to sell something, etc.

Clearly the link you wished to share is a helpful and useful link for the community. Please allow me to post it for you. You will be able to post links by the end of next week.

Voices of Myeloproliferative neoplasms https://www.voicesofmpn.com

I have just been diagnosed with Myelodysplastic Syndromes ( MDS-a bone marrow decease) & Myelofibrosis (MF-blood cancer).
I am doing a lot of research and trying to learn also. Have you checked out Voices of MPN? They will send you several FREE books. They are also holding a LIVE WEBINAR on Wednesday 3/27. Register at 919-256-2479. Hope this information helps.

Hello @kanaazpereira ,

The article you shared (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4562533/ ) answers alot of my inquiry. Just wondering if there is any follow up article.

Abit of my background, I was diagnosed in Malaysia with CML in 1989 and underwent a Bone Marrow Transplant at the Hammersmith Hospital, London in 1990. I had a relapse in 1993 and has been well since. Recently, I had a drastic weight lost from 73kg to 60kg and did a bone marrow aspiration & Threpine (also tested for Philadephia Chromosome and it was negative) and Jak 2 test. I did Jak 2 test twice and it detected a faint band (on both occassion) which means, i am Jak 2 positive right?

My spleen is normal, doctor detected hepatomegaly during the ct scan.

According to my hematologist, the Bone marrow aspiration and threpine are normal which means, i am MPN negative. I am keen to know what happen to the 8 patients with Jak2 positive and No MPN after diagnosis (in the article).

@apr931 , i am Jak 2 positive with a normal bone marrow result. Have faith it may not or very slowly to progress.

@carlavan I am on Hydrea, 2 times a day, 7 days a week. I do have stomach problems but not all the time and I do not think they are related to the Hydrea as it is not all the time and I have IBS (Irritable Bowel Syndrome) and have for more than 20 years, which I think is the cause of my stomach issues. I did experience heartburn when I started taking the hydrea 3 1/2 years ago and the doctor put me on forst, Olmeprazol and then last year changed it to Ranitidine, which is Zantac, twice a day. I only have stomach problems when I eat something which I shouldn't or when I have high levels of stress. I tak a lot of probiotics. The probiotics may help you, whatever the cause of your stomach problems are. I am currently eperiencing problems but am traveling and travel always seems to make it worse. There are more times than not tha my stomach is fine, if I am eating right, even though I am contiously taking the Hydrea, so I have not experienced the Hydrea being the cause of it. Hope you find relief.

@susanellis@I do know what you mean about connecting with others who have the same thing you do. It is not easily understood. Most know I have Thrombocythemia but since I have had some complications and changes, when they found out I am actually on chemo and it is cancer, they are shocked. I have had very little if any side effects from the Hydrea for 3 1/2 years. I am thankful. Thanks for the best wishes. I do have lung problems and other things but we are trying to figure out what is what and if the ET has changed and treatment needs to changed. Sometimes it is hard to sort it all out, especially for doctors who do not specialize in these conditions. I should have the results from the bone marrow biopsy which I had this past Tuesday in 2- 2 1/2 weeks. Maybe this will provide some answers for my newest problems.

I am + JAK2 and just had a biopsy and they still don't know for certain that I have ET but my blood work is normal except my platlets are high in the 580s. I had a stroke last year and I'm only 49 the main symptom was numbness and tingling in my hands and after the stroke burning sensation in my feet. Nobody was listening to me until I pushed for further testing and was positive. They have started me on hydrea and no bad side effects. Just hope it brings my platlets down so I don't have another stroke.