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Spleen size

After several years of stable enlarged spleen it has recently jumped from 16cms to 19cms despite 15mg Jakavi twice daily. I am in the process of trying to get Pacritinib trial a bit closer to home but urgently need the next development on the meds scene! Despite my spleen’s enlargement it’s not doing a great job of augmenting blood production with last test showing Hgb 8.9, platelets 40, neutrophils 0.8. Maybe it is just excelling at sweeping the blood cells up. Anyone know of a good school for misbehaving spleens? 😂

Although it seems to be breaking I hope everyone is getting some benefit from the lovely weather recently. Good for vit D levels unless like me you get hopelessly overheated and watch the sun from a distance. At least it still makes me feel better to see it 😀. Best wishes to all, Jan x

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Dear Jan

So sorry to hear that the rux isn’t working so well for you anymore. You sound as tho you are doing what you can to get treatment with the next line drug. I do hope it works out for you.

All the best

Rachel

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Thank you Rachel

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Hi Jan, , hmm sorry to read your spleen has suddenly developed a personality and decided to grow in the wrong direction. You made me laff as I thought it could be something from Harry Potter 'a misbehaving spleen'. If only some wizardry was possible by way of a potion but sad to say reality is more complicated than fiction.

Unfortunately as you might recall (though a few years ago) Ruxolitinib did nothing for my oversize spleen which was one of the reasons I opted for SCT as there was nothing else.

I don't know just how large a spleen can get as mine was +20 cms but I always wanted to know the volume. Post Transplant it's still large but much flatter. Re blood counts I recall my Platelets post transplant were about 10 and I had a few bags of platelets one night prior to a procedure and early next morning had a blood test and they were still 10. The spleen was said to be the culprit.

Sending my best wishes to a special person and Im keeping everything crossed you get on that trial. Chris x

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Thanks Chris! I like the Harry Potter quip! If only eh? I have actually done better than a lot of others on Ruxolitinib as it is going on 5 years before the pesky results show it is now working as well. There are two schools of thought - some say if you take a break from it and then go back to it you can get good results again. However some disagree! I will have to discuss that next time I see my haematologist. I don’t know how much experience he has but he used to work with our favourite professor so I have in effect a hotline to the top! I am seeing her annually now anyway

It’s interesting what you say about the volume of the spleen. I certainly know that there is a block of something there and it gives me varying degrees of discomfort but the doctors seem unsure when they palpate unless I wince!

I hope you are continuing to progress even if it is still baby steps. Take care my friend xx

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Sorry to hear about your spleen and that the Jakavi is no longer doing the trick. Good luck with your request for the Pacritinib trial.

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Thank you. I’ll let you all know if it comes to fruition.

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Wishing you all the luck possible for your place in the trial. Spleens that are misbehaving are a real pain, pardon the pun, but hopfully yours will be under control again soon.

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Thank you

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Hello Jan

This is something I think all of us on Rux fear - that it will stop working. I really hope you manage to get on a Pacritinib trial. Let us know what happens

Sending you my best wishes

Paula

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I guess after almost 5 years I had been lulled into a false sense of security. It has served me well during that time but over the past couple of months I have been feeling more out of control. My counts are all low and I’m transfusion dependent. My haematologist tried to reassure me that my liver enzymes have been improving and my ferritin level is going in the right direction. A scan revealed that my heart is doing ok So really I am as well as can be expected. I don’t know what he will say about the spleen as I had only just seen him before the scan.

I will continue to be my usual glass half full sort of person but in the meantime wishing it could be 3/4 full if not more!! Thank you for your best wishes

Jan

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Well I’m sure having a positive attitude can only help. So is your consultant waiting to find out if you can get into a Pacritinib trial. Jan?

Paula

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He’s hoping to get it set up at his hospital. Our well known professor didn’t think it would be worth travelling to London for the trial but I was doing ok on Rux when she said that. Apparently there is a lot of money involved in trials so my hospital would be willing to set it up even if I was the only participant. It will take time though.

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Well let's hope things can be speeded up for you, Jan. Do keep us posted.

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