Researchers still found 'excellent' survival rates for both primary, secondary disease
by Terrilynn on Tue Jan 09, 2007 12:00 AM
by Oncrx on Wed Jan 10, 2007 12:00 AM
JAK2 is a protein that functions as a signal to regulate cell functions. It sends messages in the cell, telling it to grow and make more cells, or else to stop when the body does not need more cells.Researchers believe that in MPD patients, the mutation in JAK2 enhances messages asking for more cell production. The result is too many blood cells which clog the blood and make it sticky.The JAK2 mutation (also called the V617F JAK2) is found in about:
by Ethan on Sun Nov 25, 2007 12:00 AM
by melash on Sat Mar 28, 2009 12:00 AM
On 11/25/2007 Ethan wrote:Call Mayo Clinci, they are on line to have a cure within 1-3 yrs. Jak2 is where all the research is being done.
Is there any further information on this? Also, is there any alternative therapies/supplements that have worked when JAK2 Positive?
by retired_teacher on Sat Mar 28, 2009 12:00 AM
On 3/28/2009 melash wrote: On 11/25/2007 Ethan wrote:Call Mayo Clinci, they are on line to have a cure within 1-3 yrs. Jak2 is where all the research is being done.Is there any further information on this? Also, is there any alternative therapies/supplements that have worked when JAK2 Positive?
by Deannamarie on Wed Jun 10, 2009 12:00 AM
by retired_teacher on Thu Jun 11, 2009 12:00 AM
On 6/10/2009 Deannamarie wrote:my dad has myelofibrosis and they are talking to him about JAK 2. Could all of this help him? He was on Revlimid for one year and now they say itis not working and his spleen is getting to large and he has lost too much weight. I am now hopeful about this JAK 2 possibility. What do you think?
I understand that the JAK 2 mutation is where the myelofibrosis starts. But not all myelofibrosis people have the JAK 2. The chemo that my husband is taking targets the JAK 2 gene mutation. He now takes 400 mg a day. This is the second month with the higher dose. The indications are that the chemo is helping.
This is the second clinical trial that he has been on. HIs spleen was getting large too, the chemo helped shrink the spleen. He has not been on Revlimid.
It is good to ask questions.
by izzie66 on Tue Mar 15, 2011 05:29 PM
On Nov 25, 2007 12:00 AM Ethan wrote: Call Mayo Clinci, they are on line to have a cure within 1-3 yrs. Jak2 is where all the research is being done.
On Nov 25, 2007 12:00 AM Ethan wrote:
I have recently been diagnosed with a JAK2 mutation. I would love information from everyone please.
by kirstyw on Thu Mar 24, 2011 09:57 AM
Hi! I was diagnosed in October 09 with Jak2. I had been going to this doctor with the same symptoms for months and they told me that I was imagining it. I asked for all my blood tests and took them to another dr who referred me to an oncologist who found I had Jak2 but didn't know how to treat it and said that having Jak2 meant nothing. I then found an oncologist that specialised in Jak2 and he said that my symptoms where indicators of the Jak2 and he put me straight onto Agrylin in Feb 10. My symptoms were numbness in arms and legs (not pins and needles straight numb) I couldn't walk or move my arms for days, diziness, excessive diahorea, black bruising from wearing my clothes and shoes. My platlets only went to 500 odd but it seemed to affect me. I no longer have the numbness which is god sent and my platlets are around 160 - 200 however the agrylin (400mg) makes me sick and really tired and of late my body has become use to it and my platlets are rising again and if I miss even one dose I know that night I will have syptoms. There isn't alot of info here in Australia about Jak2. I have ET now since the Jak2 and get bad heart pains like a heart attack when I fly (I fly a lot). My blood is often that sticky that the Pathologists have problems trying to draw it.
I am a very fit healthy young female. (27yr old, 59kg and 170cm). I hate having this Jak2 . I have great days and then I have bad days. I wish there was a cure or something positive about it. If anyone has any further info please share :)
by TerryW on Tue May 24, 2011 06:03 PM
Just wanted to share that 2 1/2 yrs ago my husband was dx with ET. There's a wonderful support group (MPD-NET Digest) via email posts you can tap into for great info and help for those of us dealing with a MPD. If you're anything like us....Drs in our area just are not in tune or familiar with this disorder. I don't know if I can put an email address you can contact to tap into this group...but I'll try and see if it allows me to do so. email@example.com
If it doesn't function properly...please feel free to contact me personally (assuming my email address is available). Apparently I had signed up for CancerCompass early on, forgot about it & just stumbled upon it again....but once I found the other one....it was much more helpful. People are kind and knowledgeable and responses are quick. There are a lot of ways to help manage this disorder so that you can live a normal life with it. My prayers go out to all of you having to deal with it. Terry
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