Huge spleen with myelofibrosis

My partner is considered low risk so is on watch and wait. His spleen isn't pretty big though, 22cm and he is complaining of increased tiredness. From reading here I understand that he doesn't qualify for ruxolitinib which would help with the fatigue and spleen size so I was wondering what else is available to help with these symptoms.

7 Replies

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  • Hi

    I dont think the criteria for Rux is as cut and dried as it seems, im PV and I am on it. Worth asking if you feel it would help.

    Paul

  • Thanks Paul, this is all really new to us. Steve was diagnosed after going for pre op blood tests for a completely unrelated ankle injury on 29th December. We're both still reeling a bit so hVe ,it's of questions.

  • Wow I'm a tad surprised he is on watch and wait with such a large spleen. This ties in with my response to your other post about the hospital location. I would expect him to be on Hydroxycarbamide at very least but could be his blood counts are good and stable. Fatigue is a an issue and difficult to manage. Sometimes you just have to accept things and adjust. Ruxolitinib may be of benefit as you say. As per my other response I recommend you seek the opinion of an MPN Specialist.

    Chris

  • Thank you. I've got his blood results somewhere. I'm not entirely overwhelmed with confidence about his care at the moment

  • That's a big spleen!! I agree with the comments made and would definitely see an MPN specialist. Fatigue is very common in mpn's but can be managed. Your poor partner must be reeling with the diagnosis but any questions we're all here to help. I've had MF for nearly 8 years and am on rux. What part of the world/country are you in?

    Pat

  • First thing to say is that my spleen has been bigger than that so may not be so huge comparatively. But my message would be: if you are sure of the diagnosis then try and get him on Ruxo! It's brilliant!! It may need u to get him into the higher risk MF category. In any event I would see an MPN specialist at least as a second opinion if not permanently - maybe go and see yr GP to get a specialist referral asap. There is a list of the attributes that gives you a higher MF risk tag - will try and find it and post - it includes a large spleen and over 1% of cells in the blood that should have stayed in the bm which I assume he has if they have diagnosed mf.

    Hope this diatribe makes sense!

  • Am going to ask for a referral to Cardiff. Thank you folks.

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