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lov2laf's Message Board Messages

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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 

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. 

On Sep 10, 2012 6:18 PM franskee wrote:

My 64 year old husband has suffered from Myleofibrosis for 5 years. His hemo just started him on low dose of Jakafi. Has anyone had experience with this new drug? Any timeframe that drug starts to help with symptoms.

Thanks.

Hi, I run past 18 years http://bit.ly/subscribeMPDsupport

Many advanced MF patients are pleased with Jakafi, it treats symptoms but not the underlying disease. Beware if it stops working, it can be a dangerous time. Figure he will see dramatic improvement in short order, a month or so. 

Adverse effects of ruxolitinib treatment discontinuation in MPNs
http://bit.ly/u9PGAT

Robert

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?A0=MPDSUPPORT

or 

http://bit.ly/subscribeMPDsupport

Main web site > www.mpdsupport.org

A myeloproliferative disease mailing list focusing on polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia, chronic myelogenous leukemia, and myelofibrosis. Anyone - patient, family member, or health professional, is welcome to join.

On Jan 10, 2011 8:23 AM flanjivfur wrote:

Does anyone have polycythemia vera? Please let me know. I have been recently diagnosed. I need to know info on what I can and can't eat and what vitamins I can take. I have been researching but my head is spinning with all I've found. One article will tell me one thing and the next another. Please Help.

Lots of myths on PV have been posted, so beware. Good info at wrongdiagnosis.com . Go to a facility at www.mpd-rc.org or if not possible use a university level teaching hospital, hematology department. Routine follow up care ok with any local community oncologist. We have rare disease about 4 per 100k. 30-50% progress to agnogenic myeloid metaplasia with myelofibrosis. Interferon may be able to induce a partial remission early on. Hydroxyurea will control counts. Food mostly irrelevant. Don't feed your PV with excess vitamins, discuss with the expert. bit.ly /joinmpdsupport, www.mpdsupport.org , since 1994, 3,000 subscribers from 42 countries. Robert I'm not a doctor but a PV patient list owner about 20 years. Dx in 1990. 

On Apr 09, 2010 1:22 AM jseward wrote:

Hi. My husband was just diagnosed with Polycythemia Vera, he is 34 years old & has no symptoms at all.  I guess he was so surprised at the doctors office he did not ask many questions. 

Is this really a cancer?

I have read several web sites where the prognosis is only 10-20 years after diagnosis. Is this accurate? He is having a bone marrrow test on Tuesday-I know that Polycythemia can lead to leaukemia.

Please help me understand - I am so scared - I just can't stop thinking about it.

Thanks, Jen

 

 

He will be ok. Go see a university level teaching hospital MPD expert. Get a JAK2 test. A BMB is generally not necessary, all can be discerned by a peripheral blood smear and a JAK2 these days. Get his spleen ultrasounded. Rule out odd mimic symptoms. Study www.wrongdiagnosis.com for polycythemia Vera. Join nearly 3,000 others at mpdsupport.org " target="_blank" rel="nofollow">mpdsupport.org plus this site to get good information and help. Robert, list owner mpdsupport.org " target="_blank" rel="nofollow">mpdsupport.org I have PV about 30 years. I take interferon.

On Jan 25, 2010 11:18 PM Liviu84 wrote:

My mother is diagnosted with AML and already started chemo. This week the results from the lab came out and it turns out that she has pre-leukemia. I searched on the web and i found that this is also AML. Anyone know something about this? And anyone know the rate of survive for AML?

Preleukemia usually refers to the many types of blood and marrow myelodysplasias, not AML. In MDS the cells do not function properly. AML is a leukemia.  Good information on AML is at wrongdiagnosis.com , a lot depends on various factors as to prognosis.

Robert, listowner, mpdsupport.org

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.

 

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
We have a monthly posted list in our daily digest of many local myeloproliferative support groups that meet in person. Robert at www.mpdsupport.org
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