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Myelofibrosis w/ JAK2 mutation
Blood Cancers & Disorders | Last Active: Jul 4 10:05am | Replies (42)Comment receiving replies
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 .
Replies to "Some symptoms have included fatigue, suseptability to infections, minor bruising , anemia, and frequent pre cancer..."
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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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.