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To begin Nerlynx next month for my 4th cancer diagnosis

Scarlett1 Member Posts: 4

I will be the first patient my oncologist has on Nerlynx.

I have mixed feelings about this drug as some info online says there is only a 2% increase in positive treatment results and the risk of diarrhea (so severe that hospitalization or death may result). Other side effects are similar to standards chemo side effects - no loss of hair, however - smile... I have lost my hair three time due to past chemo treatments for various cancers. It is just beginning to grow back after most recent chemo treatments.

Other studies show a 35 % increase in survivability. My wife is very skeptical but I want to do everything I can to fight this (my 4th seperate cancer over 20 years). I am still alive because I have a terrific medical team and all my cancers have been caught very early.

My most recent cancer is a stage 1 grade 3 diagnosis. This is by far the worst diagnosis I have had as the cancer is Her2 Positive. I feel lucky that this has occured at the same time that Nerlynx has become available but must confess I am worried about the side effects.

Diarrhea - I have a short gut syndrome because while having a routine hernia repair in 2009, the surgeon punctured my intestine and I developed peritonitis and almost died of sepsis An immediate colostomy was performed and I lived with a colostomy bag for 4 months - not knowing if it could ever be reversed... It was successfully reversed after 4 months but the process left me with much less bowel than normal so I get diarrhea pretty frequently under normal circumstances and had lots during my recent chemo treatments. I am taking a "medicinal food" called UltraInflamx plus 360 which has made a huge positive impact on the frequency and severity of my diarrhea. I am hoping this will also work with the Nerylnx side effects.

Has anyone out there been through or are going through treatment with Nerlynx? Would you share your experiences, please? All viewpoints are appreciated.