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.

Liked by Bijou, jfinlay

You can also reply to above at http://www.healingcreatively.com

thank you.

Liked by Bijou, jfinlay

REPLY

I have heard there are clinical trials at the Mayo clinic for the JAK2 inhibitor drugs. Does anyone know about that?

Liked by jfinlay

REPLY

I have mds… leukocytosis and have been taking ydroxyurea since sept.of 2003 to keep my white count under control so i don’t get full blown leukemia.I started out on 2 grams a day and now have worked my way down to 1000 mgs a day. it seems to be working well for me so far. God bless you and i hope whatever treatment you receive works for you.

Liked by Bijou

REPLY
@suthrnkisses

I have mds… leukocytosis and have been taking ydroxyurea since sept.of 2003 to keep my white count under control so i don’t get full blown leukemia.I started out on 2 grams a day and now have worked my way down to 1000 mgs a day. it seems to be working well for me so far. God bless you and i hope whatever treatment you receive works for you.

Jump to this post

Thank you I am looking into many things at the moment, perhaps a clinical trial for one of INCYTE’s new JAK2 inhibitorss. I am so glad your treatment is working for you.
Could you please do me a favor as I am trying to get my site interactive with responses like yours, as they re valuable to me and to others. Would you mind cutting and pasting your response onto http://www.healingcreatively.com I would be so appreciative. I wish you well. Again, thank you, we are considering hydroxyurea for the high white count and enlarged spleen.

REPLY

Was informed today from Incyte that Jakafi is for all myelofibrosis patients, with and without JAK2 mutation.

REPLY

I have been diagnosed with myelo- fibrosis about seven years ago. Before that it was a myelo prolific disorder. High white count which I still have. Hydroxyurea was prescribed to control the severe itching after a shower. I have participated in clinical trials at U OF MICH including the drug I am now using. JAKFI can reduce the size of your spleen along with other benifits. Myelo-Fibrosis is not curable. The trick is to slow it’s progression. I strongly urge you to talk to your doctor. You can live a long time with this disorder with proper care and treatment. Call or e-mail the Incyte Corporation for explanatory manuals.

REPLY

Took Hydroxyurea for years to control platelet count. But ,is there a relationship between that drug and Myelofibrosis ???

REPLY

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

REPLY
@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

Jump to this post

Hi, I,too, took Hydroxyurea for years to combat high platelet count. About three years I was diagnosed with Myelofibrosis. Am now ,and for the past two years have been taking Jakafi 15 mg.tabs twice a day. I see a Hematologist every month for blood check ups. Keep in touch with group. Strength in numbers .

REPLY
@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

Jump to this post

Thanks for the response. I’m happy to hear the medication is working for you. I, too, hope they find a drug that will work for him as well.

REPLY

@susanvij I’m so sorry to hear of your brother’s diagnosis. I understand that this is a rare disorder and that always causes concern. I found some information on Mayo’s website regarding this disorder. Even though this is rare, it looks like Mayo treats a number of patients. Please take a look at the website and information provided for a bit of background, http://www.mayoclinic.org/diseases-conditions/myelofibrosis/home/ovc-20261141. I am also going to tag @colleenyoung, a moderator here at Mayo Connect who might offer you some more information. Feel free to share any questions or concerns with Mayo Connect. Teresa

Liked by Jamie Olson

REPLY

Thank you so much for your help. We will be visiting Mayo soon. I will keep in touch.

REPLY

Good luck at Mayo. Would really appreciate hearing about info. received at Mayo re.. Myelofibrosis. Important to me also. Thanks.

REPLY

@susanvij Yes, please let us know how everything goes with your Mayo appointment. Is the appointment in March? Teresa

REPLY
@hopeful33250

@susanvij Yes, please let us know how everything goes with your Mayo appointment. Is the appointment in March? Teresa

Jump to this post

Yes, I will. The appt is in march.

REPLY
Please login or register to post a reply.