Thank you for the support and information shared to my original post.
As promised, I’m sharing what was explained to me by my referring hematologist regarding the letter sent her by the specialist.
This is my experience and I want to be careful to not alarm any other forum members. This is one dr opinion and I would of course seek others to verify
The portion of the letter that was a surprise is quoted here. “ Triple-negative patients also displayed inferior LFS (P¼ 0.003). The current study identifies ‘CALR- ASXL1þ ’ and ‘triple-negative’ as high-risk molecular signatures in PMF. Leukemia (2014) 28, 1472-1477; doi:10.1038/leu.2014.
We sent blood for more detailed genetic profiling today and I will see her back in four weeks. Depending upon the results of the genetic sequencing, we will decide when to repeat the bone marrow.
At this appointment, I did not bring up the question of a transplant. I would rather wait and see what other mutations we find before addressing this issue.
She will be back in four weeks and she is to continue with the same care as before until then. Thank you for allowing me to consult on this delightful patient. Needless to say, I will do everything possible to help.
Granted she did call me delightful 😅, but our appt never touched on any possible need for a transplant. So caught off guard I needed some assurances.
My hematologist said that as a triple negative and should there be no other obscure genetic mutations to explain my ET & MF I would be a candidate for a bone marrow transplant, because my odds of developing PMF Leukemia are much higher. (like a woman with a positive BRACA and family history can opt for a double mastectomy to prevent getting breast ca. I could have a marrow transplant.)
I’m still digesting this information, but am hopeful an explanation will be found for my ET so transplant would not be needed.
Sorry for long post. ( to be continued after next appt October 16)
PS: THIS IS 1 DR. OPINION SO I WOULD GET ANOTHER BEFORE EVER CONSIDERING A TRANSPLANT.