The string of surprising, positive, news continues - as last week Corrine had her follow up appointment with the genetic specialist at Penn. Through follow up testing on normal healthy cells via a saliva sample - it has been determined that Corrine does NOT have the the traditional hereditary Lynch Syndrome diagnosis, as the genetic mutations shown in the tumor biopsy do not occur in healthy tissue throughout her body. This is a positive development as it significantly reduces Corrine's future risk of developing a long list of other cancers, and eliminates the need for any further genetic testing within the family. It is still a mutation in one of the genes on the lynch syndrome list, but it appears to be a "1 off mutation" that is only related to the bladder tumor and its malignancies.
If you follow Corrine on Social media, you may have also seen a post on her Cancer Antigen levels. In summary, her Carcinoembryon IC Antigen has dropped from 78.4 ng/ml to 5.9 ng/ml on a scale where anything over 5.0 is a red flag on blood work. Similar story on Cancer Antigen 19-9, this has dropped from 205 units/ml to 23 units/ml on a scale where anything over 35 is a red flag. The doctor has been cautiously optimistic about these levels dropping as the numbers can jump around, but this consistent downward trend is still viewed as a positive response to the immunotherapy treatments.
The Scans. Not much the doctor tried to downplay here - he was extremely positive as we looked at each before/after photo. Lymph nodes around kidneys, stomach, lower spine, neck - swelling is completely gone. Lymph nodes in the pelvis are considerably smaller. Bladder tumor itself is considerably smaller (50% would be a good estimate). Corrinne is no longer on any pain medication, as the swollen lymph nodes that were causing the pain are no longer in the picture. She does still have a blood clot near the tumor, that will require long term blood thinners for maintenance.
In his words "long term remission is possible, and we are trending in that direction". Corrine will be on Obdivo for the next 2 years and have scans every 2-3 months to monitor progress.