(in response to my fellow canadian Ed from Jennunicorn’s super NED post a week ago and to all of you too)
I am trying to hold on the best I can. About 18 months out of diagnosis, scanxiety has returned with a vangnce as I am due for PET/CT soon. Last groin ultrasound was all clear in December. Managed to also have an abdomen ultrasound done with another doc and all seemed ok.
I was in touch with a patient coordinator from BMS lately and she told me that Opdivo as adjuvant in Canada would probably be accepted by end of 2018 which leaves the provinces to negociate after. Basically another 12 to 18 months wait… Am seriously thinking of buying a few shots directly from BMS if I’m still clear.
I also pursued my investigation on my case of « rare isolated cells » in one lymph node and send my blocks and slides to the UK and then Amsterdam where Dr van Akkoii is studying and gathering information on this peculiar situation through his clinical trial. First, and to my utter disbelief, the company in the UK (oncologica) could not find any cancer in my lymph nodes!!! I wanted them to test my PD-L1 expression and they couldn’t find any cells!!! Then Dr van Akkoii came back with … the same conclusion!!!! Dear Lord!! Funky staining in between the lymphocytes, all cells, cytoplasm, nuclei and morphology appear normal to him! So I might be … stage 2b! This is better than stage 3b but not out of the woods. I will send my stuff again for a last revision to a very top pathologist and make peace with the « incompetence » we sometimes face along this gruesome journey.
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