Dear CC Family,
I have just returned from my 20 month post treatment check up at NIH. Things were great. Still seeing some slight shrinkage and when you compare scans from pretreatment to now, some tumors have even disappeared. I was also told that what is remaining is likely to be scar tissue. I will take that and run with it!!! Again, the best news is that this has all happened without any treatment for the past 20 months....only my immune system doing the work!
The best news this past week was that Lori, a fellow Cholangio patient, who had read my story last year and contacted me about trial information (actually her friend Ellen did) has just finished treatment.....and was also there for her fist checkup and scans. She received amazing news. Her tumors shrank up to 50% in just the first month!!!! This is absolutely HUGE news! I am posting with Lori's permission. I want you all to know that it was NOT an easy process for her. She had a difficult time with treatment and ended up in the ICU for 15 days. I am so happy to say it was not in vain. It was great to get to meet her face to face and share in her good news!
Some bits of important information that I learned back at NIH is that they are trying to speed up the process of being treated for this trial for patients who are currently being treated by "standard of care" chemotherapy and are interested in this clinical trial. Right now the treatment is typically at current 3-4 months past the stopping of current chemotherapy, they would like to start screening ahead of time. They said this would look more like a "consult".....not necessarily taking over patient care but consulting with current physician and preparing for when chemo stops working. Since my second treatment, and the discovery of the mutation reactive t-cells, I believe there have been 6 or 7 patients counting me and Lori, and about 16 patients in the process of being treated. This trial is opened up to many cancers and the link is found here http://www.cancer.gov/about-cancer/trea … d=11220695
This is the information that is requested and needs to be sent for them to evaluate:
- Recent History and Physical Exam / most recent doctors progress notes and consult note
- Recent Laboratory Results
- Recent CT, MRI or PET scan report
Please indicate if the checked information is included or is being sent separately
-Recent CT, MRI, or PET scan CD (disk)
-Ten UNSTAINED Pathology slides (or tumor block in paraffin)
Please send a tumor block or 10 unstained slides with tumor on them.
-Radiation Therapy Records
I hope this helps for anyone interested. Attached are some pictures of my scans, Lori, myself, and Charmin (another cholangio patient who just had her tumors removed and her cells are growing, she should get her cells in about 10 weeks) and Lori and I consuming our oral contrast before CT scans! Thanks so much for all your support, all my hugs and prayers to everyone!!