Myelofibrosis w/ JAK2 mutation

I forwarded this on to my son, Thanks bunches shortshot80

Hi geal) His whole body hurts. He has a appt in August. He is unable to change doctors, as he doesn't have any insurance, no $ to pay another. His just beat after he takes the pill around 5-6 pm. I don't know when the next blood test is. (shortshot80)

I was diagnosed with essential thrombocythemia Dec 2016, platelets in the millions, put on hydroxyurea, started at 500mg every 3 days, increased every 2 months after blood draw, currently 1500mg daily. Platelets slowly coming down. Anyone out there with this rare disease?

Yes . I had this for 10 1/2 years and used same medication until it no longer worked. The diagnosis I now have is post essential throbosytosis myelofibrosis. I use a new effective medication that controls the red blood platelets , but not the white blood cells which are currently high .(Jakofy)
Hydroxyurea dosages will change to regulate what you need and will be good up to a point. Regular blood tests are informative as to the mg needed. Best wishes to you . It's a long journey.

Do you mind sharing what symptoms you had besides the lab work? I have "pins & needles" in Lt hand and Rt foot Dr. thinks due to back arthritis. Oncologist at Virginia Mason says this rare disease rarely seen; although he diagnosed the problem. Says no unpleasant side effects from Hydroxyurea1500mg daily although his nurse told me hair loss is common & side effects variable at this dose? Would you be comfortable sharing what you mean by "long journey"? I will be attending a cancer support meeting next week, hope to find someone with same problem.
thanks,

Some symptoms have included fatigue, suseptability to infections, minor bruising , anemia, and frequent pre cancer spots on skin which are dealt with in dermatology .
I never heard of hair loss from hydroxyurea.
I believe there must be a wide range of symptoms for individuals based on the combination of other diagnosis one may have .
It's a long journey means that myelofibrisis has no cure and is a slow progressing cancer . Medication works up to a point and then either needs to be adjusted or change the meds .
It is important to take care of yourself . Eat healthy, stay active as possible , rest . Stay positive. Best wishes to you .

Thanks for sharing. As with the Oncologist, symptoms and progression of the issue seem vague, and individual. Suggestions, although appreciated, can be applied to everyone with or without any health issues. I had expected a reply from someone with the disease, from a personal, but now noticed you are "the personnel director ", not with personal experience. And I will probably not bother with this site again.
The site never accepts a password, always requires me to enter a new password (I always use the same again), but takes about 20 minutes to access.. it seems you could might look into a user friendly site.

Hi @pearly,
Please note that the reply above was from @gael, who is also living with myelofibrosis for five years. My name appears below her post because I "liked" it by clicking the heart symbol. I thought her response to you was informative, supportive and very welcoming to a new member.

I can hear that you are frustrated with a technical issue of logging onto the site. I can help you with that. Please send me a message via the form https://connect.mayoclinic.org/contact-a-community-moderator/ and we'll get to the bottom of the problem. The site should allow you to login once and then stay logged on without having to enter a password each time.

I hope you'll continue to share with members speaking about their experience with myelofibrosis, who are offer generous support and information.

Hello and I am new to this. My brother just got his JAK2 V617F back and it said NOT DETECTED. What does that mean? They took a bone marrow biopsy and are testing him for Myelofibrosis.