Share this:

Bijou
@bijou

Posts: 7
Joined: Jul 13, 2011

Myelofibrosis w/ JAK2 mutation

Posted by @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 jfinlay, Bijou

Reply


Bijou
@bijou

Posts: 7
Joined: Jul 13, 2011
Posted by @bijou, Jul 13, 2011

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

thank you.

Liked by jfinlay, Bijou


Bijou
@bijou

Posts: 7
Joined: Jul 13, 2011
Posted by @bijou, Jul 14, 2011

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

Liked by jfinlay


suthrnkisses
@suthrnkisses

Posts: 2
Joined: Jul 17, 2011
Posted by @suthrnkisses, Jul 17, 2011

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


Bijou
@bijou

Posts: 7
Joined: Jul 13, 2011
Posted by @bijou, Jul 17, 2011

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.


jfinlay
@jfinlay

Posts: 11
Joined: Dec 09, 2011
Posted by @jfinlay, Dec 17, 2011

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


djr
@djr

Posts: 3
Joined: Jan 03, 2013
Posted by @djr, Jan 4, 2013

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.


wellness3070
@wellness3070

Posts: 9
Joined: Aug 11, 2016
Posted by @wellness3070, Sat, Jan 7 12:52pm

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


susanvij
@susanvij

Posts: 6
Joined: Mar 04, 2017
Posted by @susanvij, Sat, Mar 4 10:50am

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!


wellness3070
@wellness3070

Posts: 9
Joined: Aug 11, 2016
Posted by @wellness3070, Sat, Mar 4 11:32am

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 .


susanvij
@susanvij

Posts: 6
Joined: Mar 04, 2017
Posted by @susanvij, Sat, Mar 4 12:06pm

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.

Posted by @kanaazpereira, Tue, Mar 7 11:35am

Hello @susanvij,

Teresa, @hopeful33250 has provided some great information, and I would also encourage you to look at this recent article (Mayo Clinic New Network) about a new drug that has demonstrated potential value in treating patients with myelofibrosis: http://mayocl.in/1Ux3Hqq

You may wish to view this discussion in the Cancer group on Connect, too;
Myelofibrosis* http://mayocl.in/2n28k2Y

I also hope @jfinlay, @djr, @gouldh, @memy, @gael, @bjsdancer, @rcand10s, will return with some more insight for you to help your brother.

@susanvij, what symptoms does your brother have?


susanvij
@susanvij

Posts: 6
Joined: Mar 04, 2017
Posted by @susanvij, Tue, Mar 7 2:41pm

Thank you! He has all the symptoms except Splenomegaly. He already had two blood transfusions in two mouths period. He is very weak and recently experiencing fever. The Dr’s in Chicago said there are no drugs that will work on him since he has CALR mutation. The only option is bone marrow transplant. We have an appt coming up in march at Mayo. Hope they can give us some good news.


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2445
Joined: Mar 28, 2016
Posted by @hopeful33250, Tue, Mar 7 3:30pm

@susanvij We are all certainly wishing him well too! Teresa


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2445
Joined: Mar 28, 2016
Posted by @hopeful33250, Sat, Mar 4 12:25pm

@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


susanvij
@susanvij

Posts: 6
Joined: Mar 04, 2017
Posted by @susanvij, Sat, Mar 4 2:01pm

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

Please login or register to post a reply.