myelofibrosis

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myelofibrosis

by fun_quilts on Fri Jan 23, 2009 12:00 AM

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       I was diagnosed in May of 2004,  I was on Hydrea for almost 4 yeaars.  Afer 2 units of blood, was put on gleevec.  Is any one else on this drug.  Have you had any side effects?  What?   I have lots of nausea, fatigue, bad taste in mouth.  Some spleen and liver pain.  I would like to know of treatments others have taken, and how you did?  Looking for information and answers.

 

                                                               Fun Quilt

RE: myelofibrosis

by fun_quilts on Fri Jan 23, 2009 12:00 AM

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On 1/23/2009 fun quilts wrote:

       I was diagnosed in May of 2004,  I was on Hydrea for almost 4 yeaars.  Afer 2 units of blood, was put on gleevec.  Is any one else on this drug.  Have you had any side effects?  What?   I have lots of nausea, fatigue, bad taste in mouth.  Some spleen and liver pain.  I would like to know of treatments others have taken, and how you did?  Looking for information and answers.

 

                                                               Fun Quilt


 

RE: myelofibrosis

by lov2laf on Sun Jan 25, 2009 12:00 AM

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On 1/23/2009 fun quilts wrote:

       I was diagnosed in May of 2004,  I was on Hydrea for almost 4 yeaars.  Afer 2 units of blood, was put on gleevec.  Is any one else on this drug.  Have you had any side effects?  What?   I have lots of nausea, fatigue, bad taste in mouth.  Some spleen and liver pain.  I would like to know of treatments others have taken, and how you did?  Looking for information and answers.

 

                                                               Fun Quilt


 

You can get good and timely information from about 3,000 other patients with myeloproliferative disease in our daily digest sign up at www.mpdsupport.org. Robert

RE: myelofibrosis

by lucyeve on Thu Oct 22, 2009 05:11 PM

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Hi fellow sufferer/survivors.

I am 63, female, diagnosed 12 months ago with myelofibrosis.  I am finding it very difficult to get encouraging information on this condition.  Not many cases have been found in Ireland and all the major centres appear to be in the United States.  While websites give quite a gloomy picture, I can't believe I will have a short lifespan especially since the women in my family life to almost 90. I would be delighted to hear some positive stories and some details of treatments.

Lucyeve

RE: myelofibrosis

by lov2laf on Thu Oct 22, 2009 05:39 PM

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On Oct 22, 2009 5:11 PM lucyeve wrote:

Hi fellow sufferer/survivors.

I am 63, female, diagnosed 12 months ago with myelofibrosis.  I am finding it very difficult to get encouraging information on this condition.  Not many cases have been found in Ireland and all the major centres appear to be in the United States.  While websites give quite a gloomy picture, I can't believe I will have a short lifespan especially since the women in my family life to almost 90. I would be delighted to hear some positive stories and some details of treatments.

Lucyeve

Simple. Google myelofibrosis Ireland. Go to any one of the doctors and facilities that come up. Very promising are thalidomide derivatives with prednisone. Robert www.mpdsupport.org , we have about 3,000 subscribers, many with MF. Most of us are in the USA, many in the UK, some in Ireland. 41 countries. www.medworm.com will steer you to the latest and greatest. www.emedicine.com will give you a good patient information run down.

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