1. < Blood Cancers & Disorders

Myelofibrosis w/ JAK2 mutation

Posted by Bijou @bijou, Jul 13, 2011

I have recently been diagnosed and want to know people's experiences. Has anyone been through a clinical trial? Taken hydroxyurea? Not done anything? Worked with vitamins, minerals and alternative healing modalities? My white count is over 30,000, and spleen enlarged. Was just diagnosed 4 weeks ago.
Please share.

Thank you.

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shortshot80 | @shortshot80 | May 1, 2017
In reply to @gael "Meditation, natural endorphins from exercise, no alcohol or cut back, no smoking or cut back ,..." + (show)
@gael

Meditation, natural endorphins from exercise, no alcohol or cut back, no smoking or cut back , support group , track pain level , biofeedback, massage , medical marijuana . Hope some ideas can be of help. Best wishes .

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I forwarded this on to my son, Thanks bunches shortshot80

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shortshot80 | @shortshot80 | May 8, 2017
In reply to @shortshot80 "Hello, My son will be 62 in August and he has been taking the drug Hydroxyurea..." + (show)
@shortshot80

Hello, My son will be 62 in August and he has been taking the drug Hydroxyurea Caplets now for over one year. These pills make him sick and really tired. He is a Plasterer by trade and hasn't been able to work this whole past year. Also his body hurts all the time and the doc won't give him any pain pills. As no work-no money=no insurance. He has lost his business as he couldn't work the jobs. Round robin of problems. He takes the medicine after dinner and just goes to bed. Any Body out there who has had better luck???? One doc told him if he stopped the pills he would be dead in six months. (he doesn't see that guy any more)....... His mom!

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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)

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pearly | @pearly | Jun 2, 2017

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?

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gael | @gael | Jun 2, 2017

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.

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1 reply
pearly | @pearly | Jun 12, 2017
In reply to @gael "Yes . I had this for 10 1/2 years and used same medication until it no..." + (show)
@gael

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.

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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,

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gael | @gael | Jun 13, 2017

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 .

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2 replies
pearly | @pearly | Jun 13, 2017
In reply to @gael "Some symptoms have included fatigue, suseptability to infections, minor bruising , anemia, and frequent pre cancer..." + (show)
@gael

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 .

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 13, 2017
In reply to @gael "Some symptoms have included fatigue, suseptability to infections, minor bruising , anemia, and frequent pre cancer..." + (show)
@gael

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 .

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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.

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rabab101 | @rabab101 | Mar 30, 2023

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.

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1 reply
khandro100 | @khandro100 | Jul 4 9:57am

:Yes I am being treated for myelofibrosis with Jakafi. I was never able to take the full dose. Even with a smaller dose I have a number of side effects In the beginning I had some emotional responses . I would love to ask how others a dealing with night sweats and the general management of this illness

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