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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 4, 2017

@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 | Mar 4, 2017

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

wellness3070 | @wellness3070 | Mar 4, 2017

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

Teresa, Volunteer Mentor | @hopeful33250 | Mar 5, 2017

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

susanvij | @susanvij | Mar 5, 2017

In reply to @hopeful33250 "@susanvij Yes, please let us know how everything goes with your Mayo appointment. Is the appointment..." + (show)

Yes, I will. The appt is in march.

susanvij | @susanvij | Mar 5, 2017

In reply to @wellness3070 "Good luck at Mayo. Would really appreciate hearing about info. received at Mayo re.. Myelofibrosis. Important..." + (show)

I will definitely let you know.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 7, 2017

In reply to @susanvij "Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have..." + (show)

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 | Mar 7, 2017

In reply to @susanvij "Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have..." + (show)

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 | Mar 7, 2017

In reply to @susanvij "Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have..." + (show)

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

wellness3070 | @wellness3070 | Mar 7, 2017

In reply to @hopeful33250 "@susanvij Yes, please let us know how everything goes with your Mayo appointment. Is the appointment..." + (show)

Good luck on your Mayo visit.Only positive results !!!

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