Frustrated, stressed and finally starting Ruxolinitib sometime soon.

[artydutch]

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.

[hunter5582]

There is no question that with a complex case involving both MF and sarcoidosis, you will need to have a MPN Specialist on your care team. Given what you describe, there would be several options to achieve this critical goal. One option would be a shared-care arrangement, where you consult with a MPN Specialist about your care plan and also have a local hematologist to deliver the care.

Your care team will also need to include doctors who specialize in sarcoidosis, who may or may not be available at your local hospital. I imagine that you have already accessed this resource. Just in case you have not seen this, you might look here for support.

uclh.nhs.uk/our-services/fi...

sarcoidosisuk.org/

Note that effective care coordination is essential when managing complex cases with providers in multiple locations/practices/hospitals, l. It is often necessary to serve as our own case managers to ensure that services are coordinated in an integrated fashion. It requires that we be educated and active in managing our care. While we have a right to high quality collaborative care, we also have a responsibility to ensure that it is delivered.

It is understandable that you would feel stressed and insecure at this point. Many of us have been in this situation. When feeling overwhelmed it is difficult to take on the task of being our own case manager. Fortunately, it is not something that needs to be done alone. I believe that there are patient Advocates available through the NHS. nhs.uk/conditions/social-ca... There may also be an option to hire a private patient advicate if you wish.

It is very easy to feel alone and overwhelmed when dealing with MPNs and other rare conditions. MPN Voice has a MPN Buddy Program that you may also find helpful. While a MPN Buddy would not be able to act as an advocate, you could have someone to talk to who understands what you are experiencing. mpnvoice.org.uk/get-involve...

You will need to consult with your MPN care team to determine the appropriate monitoring and Jakavi dose titration schedule. You will need case-specific assessment to make this determination. You can find monitoring and titration information from the Incyte and other websites. From the Incyte website. jakafi.com/pdf/prescribing-...

Monitor complete blood counts every 2 to 4 weeks until doses are stabilized, and then as clinically indicated. Modify or interrupt dosing for thrombocytopenia

Given that initial monitoring may be every two weeks, a five-hour trip for the monitoring seems prohibitive. Monitoring will be vital since you are also taking immunosuppressants. You will need to discuss the potential drug interactions and monitoring protocol with your MPN care team. None of us are qualified to comment on this.

Please do let us know how you get on. Wishing you all the best as you move forward.

[EPguy]

I'm on Rux for PV and also have autoimmune. I have been on all three of the common MPN meds.

When on Rux, other immune suppressants need to be coordinated. My Rheum won't Rx them for me while on Rux (there aren't any good ones for my condition anyway)

For example it's possible your Rheum would monitor rheum markers and possibly change your dose or specific med if Rux is affecting your response.

"I could be switched to alternatives" if IFN is one of them that also needs careful discussion with the MPN expert (heam won't do) and your Rheum. Active auto immune is a risk with IFNs as noted on their labels.

[artydutch in reply to EPguy]

Thanks for all your input. I have just come back from the GP. I need further antibiotics for my chest infection as I need to be clear of infection, before starting RUX.

He agreed with me that I should be in a tertiary hospital and not a local one. The plan is to start RUX locally as I do not want any further delays, but then make an appeal to PALS to try and get a switch to Cambridge and if unsuccessful ,writing to various local agencies who may have influence.

However I need a break to get well from covid and infections, before embarking on this, so a few low keys weeks. I will keep you updated with the outcome.

[Wyebird]

I’m perplexed as to why Cambridge would not take you on. I do understand from others that Guy’s are very good at supporting local heamos. I can only suggest and hope that someone here can recommend an MPN Specialist close to where you live.

Sending hugs.

[artydutch in reply to Wyebird]

Hi Wyebird, I have just come back from the GP. I need further antibiotics for my chest infection as I need to be clear of infection, before starting RUX.

He agreed with me that I should be in a tertiary hospital and not a local one. The plan is to start RUX locally as I do not want any further delays, but then make an appeal to PALS to try and get a switch to Cambridge and if uncessesfull writing to various local agencies who may have influence.

However I need a break to get well from covid and infections, before embarking on this, so a few low keys weeks. I will keep you updated with the outcome.

[Wyebird]

that’s a huge positive having GP on side