Imagine how you would feel if your children asked you what was going to happen if the treatment you are on doesn't work, already knowing the answer. Jen Cipriani, a 46-year-old mother of two young children, is desperately trying to change the answer.
Please read Jen's post below:
I was diagnosed with stage IV EGFRm, exon 19, lung cancer 29 months ago. I was on Osimertinib as first-line treatment and had an almost complete response. Only a small portion of the original tumor remained in my left lung and that was resected via a VATS. I was then NED on Osimertinib until April of this year when my routine 3 month CT scan picked up an enlarged hilar lymph node. A follow-up PET scan showed no other active disease so we celebrated and thought we would just radiate the lymph node and continue with Osimertinib. But, thankfully, my oncologist was prudent and wanted a biopsy first. To my shock (and my oncologist's) the biopsy showed transformation to small cell lung cancer.Â
I need help, so my young children don't have to grow up without their mom!
We were devastated. I had tp53 mutation per my original tumor profile but not Rb1 loss. My oncologist ordered a brain MRI (even though I had never had brain mets and just had a clean brain scan 4 months prior). Again to our shock, I had 4 cerebellar brain mets measuring 2-4mm - the first time I've ever had CNS involvement! I quickly had SBRT to those 4 spots and then immediately started 33 rounds of radiation to the hilar lymph node. I was also started on chemo, Cisplatin, and Etoposide for 4 rounds. I have done 3 out of 4 rounds of that treatment.
Since transforming I have been so lost and so depressed, I have young children (ages 7 and 10) and I can't even look at them without crying. I just can't wrap my head around how I went from NED on Jan 28th to this, which started in early April. Everything I read about transformation is very depressing. I am terrified.
I CAN'T accept that there isn't anything I can do and I need help finding a trial or a solution, maybe compassionate use, that will allow me much more time with my children. I don't feel like I belong anywhere anymore and that has been hard. Am I a non-small cell patient or a small cell patient? I know my small cell is different from de novo small cell, but did the tumor have mixed histology from the start or is this truly a transformation? The plan is for me to continue Osimertinib as it has kept everything at bay, including the multiple bone mets I had at diagnosis, except the lymph node we just radiated. Unfortunately, there are no trials for transformed NSCLC patients. There are only trials involving immunotherapy (which can have life-threatening AEs for those of us who need to stay on a TKI). I no longer qualify for non-small cell trials because of the transformation. It is disheartening that those of us who transform are left with basically no hopeful options. There have to be therapies that we can try on compassionate use. To all the principal investigators out there, please help me, and others who have had SCLC transformation! We don't fit nicely into any trial criteria! Please consider us too. As PI's, you and pharma can make a difference in our lives. Allow us to join where appropriate or allow compassionate use if we don't otherwise fit your criteria. If not, we will just die without treatment.Â
