Allele Burden

[FlTodd]

Has anyone had a low allele burden (VAF) under 10% (VAF) and had their PV progress to MF?

[Inca]

Yes I have just progressed to M F from 11 yrs of PV.

At the moment I have blood transfusions& my Rux treatment has been reduced.

I live in France & treated here.

[Rachelthepotter in reply to Inca]

Dear Inca,

Can you tell me what dosage of rux you were on, and what it was reduced to? What is your trigger for blood transfusions? I have MF and feel lousy when my Hb drops below 110. Which is high.

Many thanks

Rachel

[Inca in reply to Rachelthepotter]

Hello Rachel,I may not be much help to you as blood counts & even B P is done in different numbers to U K. At the moment my HG B is 9 but that could be 109 in U K,it’s too low ,Hct at the mo26 .9 the criteria 35 to 45 plaquettes are 31,should be 135.When everything tumbled lower last summer I was hospitalised & tested & scanned for everything even my brain.I feel dreadfully tired continually,my Rux was dropped from 10 morning 10 evening to 5 morn & evening.Unfortunately for me my long time consultant who was a great M P N expert.now I have a younger woman who has a different outlook.I see her next month she is considering radiation for my spleen which tho not painful is uncomfortable,have to eat small meals often.Sorry not sure allele

[Inca in reply to Inca]

Sorry my G SD puppy just knocked the pad & my post disappeared.So not sure what allel burden is ,I must look it up. Be a different name here.Sorry you have to change hospitals & have a longer journey.At least you can hopefully get to Proff Harrison.My M P N team are very good here & have just been awarded a medal for their good work. Whether as good as Guys I don’t know,but thus far I am well cared for.Very Best to you Rachel.This M F is hard & like you I have had several carcinomas ,not a sun bather,but I am outside a lot but cannot cope with our very hot summers.Sally

[Inca in reply to Inca]

meant to say my good consultant retired,keep getting puppy pestering.

[monarch5000]

Since you are going to the Silver MPN Center you should ask them that question as they've followed the fate 450+ patients for upwards of 35 years. However, the Calr mutation was discovered only 10 years ago, so even their data may be rather limited. As a rule, they often recommend patients with a low allele burden to remain on a low "disease maintenance" dose of interferon to help slow or prevent progression to MF. Both Besremi and Pegasys can be used for this purpose - Pegasys is 4 times less expensive.