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Posts (13)

Jun 13, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

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 .

Jun 2, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

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.

Apr 30, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

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 .

Apr 30, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

You and your family are certainly experiencing such difficult health situations . Is your son eligible for Medicade? Does your state have low income health plans ? I hope he can find a resolution to his pain . There are alternatives to medication .

Apr 29, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

I am so sorry to hear if your serious health issues for you and your son !
No one should have pain . Can your son be more assertive in getting support for pain management through his dr ? He may need to have medical attention before August .

Apr 27, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

When was his last blood test? Red platlet count ? White cell count? Where is pain located? Condition of spleen ?  Ruxolitinib is best medication for me and I have had myelifibrosis for past five years. Hydroxyurea stoped working for me

Jan 7, 2017 · Myelofibrosis* in Blood Cancers & Disorders

The other meds are for keeping blood thin- plavix . And others for preventing stroke. I also have a prescription for potassium .
I have no physical symptoms – aches or pains , just fatigue , which fluctuates . My RBP and WBC are low , but not dangerous .
How old are you ?

Jan 5, 2017 · Myelofibrosis* in Blood Cancers & Disorders

@I was diagnosed about 4 1/2 years ago . My main medication is ruxolitinib or jacofy . I am at a moderate level and considered stable . I take other meds as well.