The MDT meeting ( my first one) concluded that I need to start RUX and I qualify on the NHS, as MF intermediate 2. This has taken me nearly 9 months to achieve and I feel frustrated about the time lost. I now also have an enlarged spleen, which I did not 9 months ago.
I have been treated privately so far. I had my biopsy under anaesthetic and this was not offered on the NHS. I stayed with the original specialist and was not referred back to a MPN specialist team on the NHS. At the time I had never heard of MPN ‘s and until attending the London Conference had no idea how rare the condition is and how important a specialist team is.
I have asked to go back to the NHS IN Cambridge, but Anna Godfrey’s team in Cambridge has turned me down as they have no capacity ‘ . I had then hoped that GUYs would take me on, as this was agreed in my last consult on 9 January 2024. However both hospitals now want me to go to my local hospital and start Rux there, despite being willing to travel.
I have an appointment on 15 Feb with a local haematologist, so another two weeks wait, who is not an MPN specialist and deals more with lymphoma. I feel totally insecure and stressed with this latest referral, as I also have Sarcoidosis and locally there is no experience of this. Two rare diseases and yet not being seen for MF at a more specialist hospital.
Both Guys and Cambridge will be available in the background for opinions, if needed. However this does not give me more security.
The last year I have had really had to direct my hematologist to prescribing RUX and this has been hard work and now I have another hematologist who may not be up to speed and I am not in a hospital where I could be switched to alternatives if Rux is not right for me. Being MF int 2 and not low stage, I feel I want to be confident that the consultant I see, has dealt with many cases and not just the odd one. I like to be informed but do not want the extra responsibility of managing my illness and keeping communication between various specialist going.
I just had Covid followed by a throat and chest infection. I am tired of being ill, trying so hard to manage all my symptoms and I cannot help feeling rejected.
Any advice on how to go forward?….
Also I would like to know how intensive the initial monitoring of Rux is. How often do I need to be seen? Is it unrealistic to make a 5 hr return journey if I have my treatment in London? I have low platelets, lymphocytes and on immunosuppressants for my Sarcoidosis.
Is there a way that I can persuade either hospital to take me. Cambridge is only 23 miles from me so would be easier.
Any advice would be great.