Hi community, I just had a visit with my onc and was seen by her NP. I went off therapy a couple of months ago in order to freeze my eggs, and within a couple of months I was experiencing the same symptoms I had prior to diagnosis - weakness, fatigue (we need a new word for this - doesn’t do the bone weariness justice), intermittent fevers, and myalgia. This prompted me to ask for a PCR and, sure enough, I went from MMR to detected at 0.026%.
I hope someone relates to this: how I feel physically is landmarked by the diagnosis; beforehand i felt healthy and then i did not. It’s worse off therapy than on (thank goodness). I do not understand how bloodwork significant for neutrophil, lymphocyte and immature granulocytes is not sufficient enough to support the fact that I do not feel well. Sometimes it feels like, because the IRIS trial was so revolutionary, my pain is dismissed. I am immensely grateful that this cancer is treatable, but our perspectives are relative.
Apologies for the rant, but I have been invalidated by this clinical team and i am just wondering how you feel. Similarly? Or do your doctors believe your symptoms are real?
With gratitude.
O (NYC)
