38 and just found out I am JAK2+

[Spectabilis]

Hi All, I was informed yesterday that my JAK2 test came back positive. It is hard to understand what exactly that means in regards to my health and what I should prepare myself for. I am looking at getting a bone marrow sample taken on Tuesday and I'm having anxiety about the procedure. What will this tell the doctors? What do i have to look forward to regarding quality of life? I have two young children. Will I be able to live a somewhat normal life? Thank you in advance for any feedback.

[bwm123]

Spectabilis,

Welcome to the MPN family. I was diagnosed last year at 45 and had similar concerns. If the disease is managed, most people with PV and ET live very normal lives. MF is a bit more serious, but is a very small percentage of MPNs and can be managed. All MPNs include some challenges like fatigue, itchiness and other symptoms, but they vary significantly by patient.

The bone marrow biopsy (BMB) will help your doctors understand the health of your bone marrow. Some of the items they will look at include, but are not limited to: (1) the cellularity (cells and structures in the marrow) to determine if your marrow is working hard and producing too many cells. (2) the rate at which your cells are maturing (rate of trilineage hematopoiesis), (3) how large the cells that turn into platelets are (Megakaryocytes), (4) if you have any fibrosis in the marrow (fibrosis can fill the marrow and prevent your marrow from producing cells - this is associated with MF and is uncommon).

Glad to hear you are having a BMB to get a reference point.

As you begin this journey, recognize that it is a marathon and not a sprint. For me it took about a year to get "settled into" this disease and feel comfortable with the direction. Learn what you can about the disease and be pro-active in your care. Find a good doc and consider seeing a specialist. The fact that your doc is doing a BMB is a good sign that they are pro-active.

Good luck!

BWM

[Spectabilis in reply to bwm123]

Thank you BWM!

I really appreciate your clear explanation. Do you have any links to recommend?

Best,

Amber

[bwm123 in reply to Spectabilis]

Hi Amber,

Sorry, but I do not have any links with details. The information came from reading archives on a MPN listerver (discussion group of amazing, knowledgable patients who have been dealing the MPNs for a long-time). The listserver is at listserv.acor.org/ and is called MPN. If you have any questions about your BMB results, feel free to reach out.

Bryan

[MaryELWoods in reply to bwm123]

I really appreciate your thoughtful reply. My oncologist tells me nothing. When I was being tested for JAK2 my primary physician would only say that he was running "special" tests. I found out I had something when an oncology nurse called to admit me to oncology services. When I met my oncologist she told me, "think of it this way, you're a farmer who planted two crops of corn but your body grew four crops." Seriously? I'm a nurse and a healthcare executive! I will change insurance in January and will get out of this terrible health system I am currently in.

Sorry for the rant. There are days where all I really know is that I have ET, I take an aspirin daily, and my platelets are 800k.

[Kelly2 in reply to MaryELWoods]

The same with me. Maybe the doctors don’t want to frighten us although he once told me that Jak 2 is a mutation and that eventually it turns into myelofibrosis. I am having an appointment soon to see what new examinations I should have.

[Belgobrit72]

Hi, I'm 45 and wss diagnosed with JAK 2 over 3 years ago. I was first on aspirin, then for a few months on anagrelide & aspirin then aspirin & venesections only until last March when my doctor decided I needed a bone marrow to get a better assessment of the situation. This resulted in a diagnosis of smouldering myeloma & lots of additional tests. I was also started on hydroxy which had been offered previously but I had refused because ofthe chemo idea. I have been taking it since April & my platelets have nowdropped back to normal, I haven't had any side effects ans if anything I am feeling a lot less tired than before.

This page is so helpful to know that you are not alone.

[Spectabilis in reply to Belgobrit72]

Hi Belgobrit,

Thank you for response. If my understanding is right, you're doing a chemo treatment for myeloma? If I may ask, Is it a pill or other form?

Best,

Amber

[Belgobrit72 in reply to Spectabilis]

Hi Amber, the chemo is for the JAK 2 to keep the platelets under control. The myeloma is currently smouldering, had full body xray & scan to confirm there was no bone damage. As inactive, no treatment needed, just regular bloods including renal functions checks.

The hydroxy is a tablet, 500mg, I take 1 a day 6days a week and 2 once a week at the moment. Some people on this page take more. The first mobth I also had to take a anti-gout tablet. No real side effect for me, you need to be very careful in the sun thpugh and wear sun block. I noticed this summer that even factor 50 had to be topped up more often as could feel my skin tingling more than previous years.

[Dora1971]

Hi, I'm 46 and was diagnosed 11 years and I have 2 children.

The chances are you will go on to have a normal happy life, with just a few symptoms thrown in for good measure. In the grand scale of things they will be symptoms that you can manage.

Xxx

[Mazcd Partner MPNVoice]

Hi Spectabilis, welcome to our forum, we can all understand your anxiety regarding your MPN, we have all been through the same thing so you are in the right place for support. Once you have been told which MPN you have you will be able to read all about it on our website mpnvoice.org.uk and try and understand it all more. Many of us on here have had our MPNs for many years and living a normal life, so try not to worry too much, easy to say I know. Best wishes, Maz

[Betsywest]

Hi there and welcome to this very friendly & supportive forum where you will be reassured, gain information and importantly realise that you are not alone. We all totally understand how scary it is at the beginning,. I’m 39 & was diagnosed earlier this year with PV JAK2* & was completely terrified but with time I have learnt to live with this condition & realise my life will continue pretty much as it did before which is a relief especially with a young family like yourself! I as yet haven’t had to have a biopsy done but I know they are very useful in giving the drs more information. Best of luck on your journey & remember we are all here for you. X

[Spectabilis in reply to Betsywest]

Thank you