Newly diagnosed

Hello everyone my husband, 67 was diagnosed with MF out of the blue after blood tests, the doctor gave us a Macmillan leaflet and said he would see us in three months. Having no idea what it was until I got home and read the leaflet, I googled MF and to my horror seen what it is but, too much information is dangerous... Initial Questions which I will also look on this site for are:-

1 is it good news he only wants to see us each three months

2 what should I be asking at my next appointment

3 is there anything I can do to help my hubby before we see him

Thanks everyone, I am continuing researching the web but speaking to people who have the disorder I am sure is much much better


16 Replies

  • The good thing is you found this web site,one person who will help you is the Town Cryer ..he has had this illness for many years ,,,he is full of enthusiasm ,.to help your husband to cope be kind and understanding, We all are she'll shocked at first, but you will learn to cope one day at a time,,calmness and gentle support is the main things we need ..keep in touch ask any question ,we are here ,,,,,

  • Thank you for responding, I'm also researching in depth the MPD voice page is full of useful information too..

  • Hello Armanimick - I'm by far not the best qualified bod to advise you however to attempt to answer your q's and give you some re-assurance I will say Yes it's good that you have a 3 month appt gap, I have been having 2-3 month appts for 7 yrs however each patient is different. Has he got any symptoms and been put on any initial drug treatment. . . The questions you will probably ask will stem from the knowledge you gain between now and the next appt and some of it depends on your hubbys symptoms and how he was diagnosed. I really wanted to know how it might affect me int short term, what treatment options were available and what my longer term outlook was. Not much then eh.

    As regards helping your hubby you have to prepare to be innit for the long haul and if you already have a good strong relationship in which you have love, trust, respect and care for each other then you're already doing enough. .

    And finally be careful about relying ont t'internet sites as many are out of date by as much as ten or fifteen yrs and things have moved on. Stick to reliable sources.

    I wish you both the very best as I know what a difficult period it is following diagnosis.

    Cheers JR -

  • Thank you JR, no medication. We can only see he's lost weight and tires earlier than problems so far apart from the worry as to what is around the corner... Aged 67, we have a lot of questions but think, as you say, everyone is different so outcomes different and yes, I will be with him every step of the journey.....take good care of yourself JR

  • Hi JR,

    I have just read your reply, To Amanimick, about newly diagnosed. I told you, you have a charm,

    this is the best reply i have read so far, It must have made them feel so much better. well done.


  • My husband also has primary milofibrosis three months isn't bad has he an enlarged spleen my husband was diagnosed a year ago now and is on the new drug ruxolitinb has gained weight and feeling a lot more energetic. So good luck to you both read up as mutch as you can forgot to add his spleen has shrunk from 19cm to 8 cm in 6months on ruxo wonderfull drug

  • Thank you....I'm hoping for more information on his spleen size and blood counts when I next go to the doctor with him, at least I have something to compare severity (or not) guessing if no drugs recommended apart from aspirin which he was on already, it's good news for now... I am also asking if he can be referred to a specialist such as Dr Harrison who through Maz has been very supportive with information. I am very pleased I got onto this site, nothing better than first hand info from people who have been there ! Thank you

  • Would like to talk with town cryer are you out there.

  • Hi. Not sure I would be happy with three months until I had an idea of what stage I was at. Was the doctor you mention a GP, Haematologist or Myeloproliferative specialist? Do you know the significant blood counts, Haemoglobin and Platelets are a good start, from your consult. You should have been told these but if you can't remember your GP or receptionists might be able to help. MF can move slowly or quickly, can sometimes be helped (not cured) by drugs which work well on some but not all. You are doing the right thing with your research to prepare for your next appointment but armed with more knowledge might want it sooner. My background - I had fast moving MF a few years ago and was treated with a stem cell transplant (a risky potential cure that is not suitable for all). If you need a second opinion there is no one better than Prof Claire Harrison. Good luck.

  • Dear MFBMT2011. Thank you. No we were told nothing apart from he had Myleofibrosis, that it was treated by transfusions and chemo but would be with him all his life. On the way out, given a leaflet. He is a haematologist, we simply went for blood test results and voila ! yes, I am arming myself and might just ask to bring the appointment forward. We just have to have faith in these docs but if no info forthcoming then second opinions and referrals it is...just have to check I'm within my rights to be referred, but saying that not given up on current doctor yet. One of my q's is have you treated anyone else with MF so I can get an idea of whether he specialises. Thanks for making contact and my best wishes to you

  • My first haem, who only had 5 MFers in an area of 4-500,000 effectively wrote me off so I sought a second opinion pronto, and was referred to Claire H. Haem's cover a wide spread and MF is rare so, if it is not their speciality, then seeing a Myeloproliferative specialist shouldn't be an issue. This site is a good source of info. I am a member of a private Facebook page for people with ET, PV, MF and transplantees like me. Although predominantly Americans it also covers UK, Oz, NZ, Germany and other countries . It is another place individuals can ask questions of people at varying stages or just sit in the background and read about others, if that would help you or any others here.

  • Thank you and yes, the more knowledge the more power...can you let me have your FB site and I can log in.... Amazing that people have got together there too.....Many thanks

  • Invite is by email so if you email me on I will send an invite to you from Facebook and vouch for you. One of the gatekeepers will then authorise you. All you do then is repeat your intro to here and away we go. Chris ps am away in Scotland at the moment and back at weekend if you would like a chat to increase your knowledge from a patients perspective. Maz knows me as I buddy transplant patients for MPDVoice.

  • Thanks, be in touch soon

  • Hello, Our son was diagnosed at 37 with PMF, seven years ago now The one thing we very quickly realised was to only look at trusted websites such as MPD Voice, other sites can be very frightening and untrue. We have attended several forums with Professor Claire Harrison and they are a great help in giving out the correct information and we meet other people in a similar situation.Luckily our son is very well and at present does not seem to have any problems. His Haematologist , like Professor Harrison has a huge interest in all aspects MPD. Take care.

  • Hi must say I agree with MFBMT2011 about the lack of information and time between next appointment!. I was diagnosed with MF 2 years ago (this month) after blood tests and 2 bone marrow tests (ouch!). then referred to a Haematology consultant at my hospital all this happened within a few weeks. I was then put on aspirin and Hydroxycarbamide and was initially on 4 week check ups, it was only last autumn that my appointments are now at 12 weekly intervals, and I don't consider myself to be affected to badly compared to what I read on here.

    I don't go through my doctor at all except for normal stuff - but even then she carefully considers what she gives me to ensure it doesn't react with my other meds. What you read initially can be very scary and you and your husband need a caring team of health professionals around you while this all sinks in.

    The Sister in the haematology clinic was fantastic with my husband, she always made sure that he was ok while I was going through everything. take care of yourselves and stand firm and brings things forward. xx

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