Myelofibrosis

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Myelofibrosis

by stacey6165 on Fri Apr 04, 2014 10:16 PM

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My dad has been diagnosed with myelofibrosis Obviously I find this very distressing He is on a low dose chemo tablet to keep his spleen from being as enlarged as it was initially and he is having monthly checkups with his oncologist. One of the symptoms he has been suffering from for over a year now is intense itching when his upper body comes into contact with water, showers etc. also if he gets stressed or overheated the itching begins also. I know this symptom especially along with the mf is causing my dad great upset and signs of depression. Has anyone else experienced this symptom? Did anything help? He has tried antihistamines, light therapy, Bowen therapy. Are there any support groups specifically for mf patients in Australia? Thankyou

RE: Myelofibrosis

by lov2laf on Sat Apr 05, 2014 06:17 PM

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On Apr 04, 2014 10:16 PM stacey6165 wrote:

My dad has been diagnosed with myelofibrosis Obviously I find this very distressing He is on a low dose chemo tablet to keep his spleen from being as enlarged as it was initially and he is having monthly checkups with his oncologist. One of the symptoms he has been suffering from for over a year now is intense itching when his upper body comes into contact with water, showers etc. also if he gets stressed or overheated the itching begins also. I know this symptom especially along with the mf is causing my dad great upset and signs of depression. Has anyone else experienced this symptom? Did anything help? He has tried antihistamines, light therapy, Bowen therapy. Are there any support groups specifically for mf patients in Australia? Thankyou

Try www.mpdsupport.org and on Facebook https://www.facebook.com/groups/375525335856981/

Try http://www.mpd-oz.org/

I have an itch information file for those of us with an MPD. Email me at roberttollen at gmail dot com. 

RE: Myelofibrosis

by Larabee44 on Fri May 23, 2014 05:05 AM

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On Apr 04, 2014 10:16 PM stacey6165 wrote:

My dad has been diagnosed with myelofibrosis Obviously I find this very distressing He is on a low dose chemo tablet to keep his spleen from being as enlarged as it was initially and he is having monthly checkups with his oncologist. One of the symptoms he has been suffering from for over a year now is intense itching when his upper body comes into contact with water, showers etc. also if he gets stressed or overheated the itching begins also. I know this symptom especially along with the mf is causing my dad great upset and signs of depression. Has anyone else experienced this symptom? Did anything help? He has tried antihistamines, light therapy, Bowen therapy. Are there any support groups specifically for mf patients in Australia? Thankyou
My Dad had myleofibrosois . He just passed away three weeks ago! He had an enlarged spleen and regular blood transfusions. Towards the end he got worse. Very tired, weak and different things in the body went wrong. The doctors gave him six years when they first diagnosed it. He lasted 26 years with it!! Most of the time, he felt well but there were times when he struggled through the illness. Bless him. I wouldn't wish it on anyone. I hope he is at rest now and out of pain xx There is definitely hope for patients out there with the illness. My Dad had a very long stretch of it. He had a lot of faith in God and good Doctors!

RE: Myelofibrosis

by Scorpio1944 on Sat May 24, 2014 01:59 AM

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Very sorry to hear about your dad. Had there ever been any consideration of a bone marrow transplant?

RE: Myelofibrosis

by Larabee44 on Sat May 24, 2014 02:10 AM

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On May 24, 2014 1:59 AM Scorpio1944 wrote:

Very sorry to hear about your dad. Had there ever been any consideration of a bone marrow transplant?
When he was diagnosed in his forties, the doctors said he was too old to have a transplant. They did try and match him with his brothers and sisters, but they weren't a match. Then that was it. He just had transfusions and medication. He did pretty well though. 26 years of it. . How are you doing?
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