Enlarged spleen/liver

[flog]

I have MF on no medication at the moment. Have enlarged spleen and liver and now struggling to eat a full meal, also have a lot of heartburn/reflux. Does anyone know of any exercise to increase my very small chest cavity.

[Mazcd Partner MPNVoice]

hi Flog, sorry that you are experiencing this, you could ask your haematology clinical nurse specialist for some advice about how you are struggling to eat a full meal, she/he should be able to give you some advice about how to manage this. Maz

[flog in reply to Mazcd]

Thank you Maz, diet is something I will ask about at my next appointment.

[DougyW in reply to flog]

I'd actually email that question and symptoms as the CNS will probably get back to you earlier and you won't get muddled with the pressure of the appointment. Believe me they don't mind those questions like that.

[flog in reply to DougyW]

Thank you for replying and your suggestion, Maz very kindly suggested I ask the clinical nurse for advice, which I will do.

[Scaredy_cat]

Ask about ruxolitinib as that is supposed to shrink the spleen

[flog in reply to Scaredy_cat]

Thank you for replying, as Maz has suggested, I will ask about diet and possible medication at my next appointment. So far is has been just watch and wait.

[Otterfield]

I think it's important that you see your consultant about this. I had reflux with a persistent cough and a very enlarged spleen. My consultant thought that my spleen was causing the reflux, with the cough resulting from the reflux, but Ruxolitinib got rid of all my symptoms, as well as enabling me to eat normally again.

[flog in reply to Otterfield]

Thank you for your reply, I will ask about diet and medication at my next appointment, like you, my reflux is pretty persistent and I dont want to be continually relying on omeprazole. I hope you are doing well, I have followed your MF journey with interest, as I guess that is the route a few more of us will be going down.

[Flyingsteamer]

Hi flog, sorry to hear of your suffering, as others have said there is medication like Ruxolitinib which reduces spleen size but I am not sure if it is only applicable for JAK2 mutations of also for CalR. There is a clinical trial in the UK called FEDORA which I am the first patient on, it is looking at the benefits, toxicity and tolerability of Fedratinib in conjunction with Ropeginterferon Alpha 2b (Besremi) in patients with Myelofibrosis. You may want to talk to your mpn specialist to see if this is a path you would benefit from. Since being on the trial the Fedratinib has reduced my spleen size almost back to normal and other than the low hemaglobin causing breathlessness I am leading a pretty normal life again, here's some details: ashpublications.org/thehema...

Hope you get sorted out soon.

[flog in reply to Flyingsteamer]

Thank you for replying, a clinical trial is not something I have thought about or considered in the past. I am post ET MF Calr mutation, and so far on no medication, so if applicable, this is something I can ask about at my next appointment.

[ConniesDad]

Ruxolitinib is available to Myelofibrosis patients in the United Kingdom who are graded as Intermediate 2 on the DIPPS scale regardless of the genetic mutation

[flog in reply to ConniesDad]

Thank you for your reply, I will be asking about medication that is suitable for me at my next appointment.