Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment.
Going through the details we got but there seems to be a trial here in Ireland and some other treatment thay will become the norm in six months.
Lymphocytes gone from 25-32 in six months. Started at 11 two and half years ago..
Moving from six month to three month blood tests now. Anyone had the same mutation and any best place to read about the latest treatments.
Thanks all
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NewCll
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Testing for XPO1 is pretty new, it wasn't offered when I was diagnosed.
Various online oncology journals seem to be the places posting articles.
Now that lymphocyte count is above 30, with the previous 6 month test being 25, every 3 month testing is standard I believe. When lymphocyte numbers are low, the likelihood of any CLL present having a huge impact on other cell lines is minimal, especially if other labwork is normal/near normal. Now that the disease burden is higher, the docs watch a little closer. They will want to have a number of readings to verify the lymphocyte doubling time. This will give a better idea of how active the disease is becoming.
While the XPO1 mutations indicate that these patients generally have shorter times to their first treatment, the specifics aren't yet known. So you are still on a waiting game.
FWIW, it may be that only certain EPO1 mutations are the ones driving disease state. Here's a link to a thesis publication where someone is finding a correlation for a specific type of EPO1 mutation and disease. Who know if this will turn out to be at all similar to how some TP53 mutations are not associated with aggressive cancers.
It also looks like drugs targeting XPO1 are being developed. This marker is associated with more aggressive cancers like some of the non small cell lung cancers,so drugs for a number of them may be in development.
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