My husband has Myelofibrosis ( Aust)

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My husband has Myelofibrosis ( Aust)

by Suzbr13 on Mon Jan 12, 2015 03:31 AM

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Hi Its nice to have somewhere to vent, where people know what you are talking about.

My husband was diagnosed with MF last April, he had been having symptoms for over 5 years but no one could pin point the problem. I cant seem to find much info in Sydney or anyone to talk to except the Dr. She is ok but lacking.

Garry ( my husband) is having the worst time with the itchyness under the skin. We have tried antihistamine but it makes him so out of it the next day. Its the only thing he can take so he can sleep.

He decided 2 months ago that he doesnt want to take the Chemo ( Hydroxy) and the warfin for the blood clots which he has. He told the secretary of his Dr but the Dr didnt even call back. He is not handling the situation well, he keeps telling me he doesnt want to be here because he doesnt have any quality of life. He has all the symptoms, night sweats every night, spleen pain, bone pain, extreme tiredness, blood clots etc. He said he could go on if the itchness could be helped. I am going to try and find another Dr who would try an explain things more clearly to him. He is constantly angry and it doesnt matter what I do at times.

So sorry for venting but I really dont know what to do now.

Thanks for reading :-)

 

 

 

RE: My husband has Myelofibrosis ( Aust)

by lov2laf on Tue Jan 13, 2015 05:18 AM

Quote | Reply

On Jan 12, 2015 3:31 AM Suzbr13 wrote:

Hi Its nice to have somewhere to vent, where people know what you are talking about.

My husband was diagnosed with MF last April, he had been having symptoms for over 5 years but no one could pin point the problem. I cant seem to find much info in Sydney or anyone to talk to except the Dr. She is ok but lacking.

Garry ( my husband) is having the worst time with the itchyness under the skin. We have tried antihistamine but it makes him so out of it the next day. Its the only thing he can take so he can sleep.

He decided 2 months ago that he doesnt want to take the Chemo ( Hydroxy) and the warfin for the blood clots which he has. He told the secretary of his Dr but the Dr didnt even call back. He is not handling the situation well, he keeps telling me he doesnt want to be here because he doesnt have any quality of life. He has all the symptoms, night sweats every night, spleen pain, bone pain, extreme tiredness, blood clots etc. He said he could go on if the itchness could be helped. I am going to try and find another Dr who would try an explain things more clearly to him. He is constantly angry and it doesnt matter what I do at times.

So sorry for venting but I really dont know what to do now.

Thanks for reading :-)

 

 

 

www.mpdsupport.org , there is hope, new drugs in trials, itching can be controlled, I went misdiagnosed ten years, quite common. We have rare diseases about 1 per 100,000. Go see one of these MPD specialists, www.mpd-rc.org research hospitals, local community oncologists mostly deal with solid tumors. Get him on an SSRI if he is depressed, depression adversely affects morbidity and mortality. Caution with cachexia, drink supplemental protein drinks. Try nightly ranitidine 150 (Zantec) also Zertec might help. Use Benedryl liquid liberally. Contact Ken Young if you are in AU. Hi All, 

Just to let you know that the MPD-Oz email support list is alive and 
well. If you want to talk with fellow Aussies and Kiwis about MPNs or 
find information about face-to-face meetings or telephone support 
sessions please email me on info@mpd-oz.org. I will add you to the list. 
or visit http://mpd-oz.org/ 
Cheers 
Ken Young 

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