Symptoms with MF

[Hopert]

Hello

My husbands initial diagnosis of CMML has now been changed to primary myleofibrosis. He has an ache on his lower right hand side which won’t go away.. Has anyone else with MF experienced a similar symptom?

Thank you

[ConniesDad]

Hi. I have PMF too. My ongoing abdominal pain is in my left side due to enlarged spleen. Not sure what may be causing his pain but I suggest he contact his consultant or the clinical nurse specialist at the hospital haematology department for further advice.

[Hopert in reply to ConniesDad]

Thank you for your reply.

[Hopert in reply to Hopert]

Hello connies dadCould you tell me when you were diagnosed and if you are having any treatment. Our next appointment is not until Dec when treatments will be discussed.

[ConniesDad]

Hi. I was diagnosed in April 2020 and was initially put on watch and wait. I am unfortunately very symptomatic with itching, extreme fatigue and fluctuating abdominal pains in the spleen area. My consultant offered me treatment with hydroxycarbamide or thalidomide but I rejected these and so was offered Pegasys (interferon alpha) and have been on a steadily increasing dosage, currently on 90mcg/week.

My symptoms are steadily getting worse and in August this year I was offered a stem cell transplant, which I have agreed to and am currently undergoing tests whilst a donor is sought.

[Hopert]

Thank you for your reply. As you know the terminology and medication is very confusing. Your response is very helpful. Wishing you well.