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Myelofibrosis w/ JAK2 mutation
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.
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@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
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1 ReactionThank you so much for your help. We will be visiting Mayo soon. I will keep in touch.
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1 ReactionGood luck at Mayo. Would really appreciate hearing about info. received at Mayo re.. Myelofibrosis. Important to me also. Thanks.
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2 Reactions@susanvij Yes, please let us know how everything goes with your Mayo appointment. Is the appointment in March? Teresa
Yes, I will. The appt is in march.
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2 ReactionsI will definitely let you know.
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2 ReactionsHello @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?
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2 ReactionsThank 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.
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1 Reaction@susanvij We are all certainly wishing him well too! Teresa
Good luck on your Mayo visit.Only positive results !!!