How rare is ET with cMpl?

Hi, the title says it all really. I’m struggling to find any info on this mutation.
Hope someone can help?
Thanks

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Hi, sorry @Quercus I cannot help you medically but perhaps what we often seem to share is the same fears, thoughts, feelings and practicalities.
Perhaps we understand each other as often others cannot and we can all support each other through Covid times.
Please keep sharing how you are and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Take care

Hi @Quercus

How are you doing? As @Erica rightly says, the Support Services Team are always here to help :slight_smile:

To answer your question Quercus, could I just check, are you referring to the MPL mutation? if so, you may find our booklet here helpful: https://media.bloodcancer.org.uk/documents/Myeloproliferative-neoplasms-Blood-Cancer-UK-info-booklet.pdf it talks through the different types of MPNs, one of course being ET, if you have a look on page 36, it discusses the different kinds of mutations which can occur when ET develops. 5% of people diagnosed with ET have the MPL mutation.

Hope this helps? and hope it was the information you were looking for?

If we can be of any further help, do let us know,

Su

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Hi @daran79 a great big welcome to our forum. Good Luck with your sale and please do let us know how you get on and how you are doing.

Thanks I have downloaded it now

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@Quercus that’s great to hear, we hope it was helpful to you? and hope you’ve been doing okay?

Su

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Also worth looking at the MPNvoice website, which is focused on ET/PV. Mpl mutation is one of the less common ones, so information is relatively sparse. There seems to be enormous variation in the effects of MPNs and their treatments, which complicates matters further! They seem to hit some people quite hard, where others, like myself with ET (CALR) have an entirely normal life on 1000mg hydroxycarbamide daily.

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