Mylofibrosis

Hi everyone. Three weeks ago my husband diagnosed with mylofibrosis after PRV for six years. However his marrow sample was sent to another hospital for checking and we were told yesterday that the other hospital have said it is accellerated PRV so that is his diagnosis. We were told that he is in the process of change but no one knows when it will change. We were told that if and when a change occurs a mini stem cell transplant would be an option. Feeling more positive but also confused as to what all this means. Thanks

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  • Hi again Tissi. Both PV and ET can develop into MF. I am not familiar with the term accelerated PV although I have just read that second stage PV can look like Myelofibrosis when I googled it. I can help you with getting more info on stem cell transplant as I have had one. It would help to know what part of the country you, or in fact anyone who posts, lives in, just put something in your profile as it might help a fellow contributor point you to a different hospital or a psrticular specialist.

    Chris

  • Thank you. Second diagnosis made by Addenbrookes hospital who did not agree with our hospital and our consultant said that they diagnosed accellerated PV and not mylofibrosis at this time. Up until last September 2011 HU and venesections every 6-9 weeks, then a massive stomach bleed in October (put down to aspirin after tests) husband developed anaemia and his red count has not picked up, hence the biopsy. We have been told he will be closely monitored and if any changes occur will be forwarded for a mini stem cell transplant. Problem is no-one knows when and if the change will come. The stomach bleed seems to have set all the blood problems off. At the moment red count is 12.5 and the white count is 50000 so he is back on HU again. We were told a mini stem cell transplant would be performed up to aged 70 if general health is good. Husband is 61 at present. I am just a bit confused as to the diagnosis, can you please send me the link about second stage PV. Thanks

  • Thanks for sharing your location. I have a buddy who is being lined up for SCT in that area. The link I found is clinlabnavigator.com/myelop... . I googled Accelerated Polycythemia Vera and this was one of the results.

    I am just a patient so share your puzzlement at the distinction between the two. Maybe you need to ask whether SCT would address either condition rather than wait until a change makes it an imperative as by then your husband's health could have detiorated further.

    Good luck with your investigations.

    Chris

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