I did not change my diet at all. (Though I am not the healthiest eater.)
My Mutations are:
Pyro wrote:Keytruda side effects? At least the ones you saw?
mpbser wrote:I came back to this thread and double checked my husband's TMB. I was off earlier. It's 7.605. I have no idea if that's considered low or intermediate/moderate.
Jack&KatiesMommy wrote:Pyro wrote:Keytruda side effects? At least the ones you saw?
Sorry! I just saw your post. The only side effects I have had vary each treatment that I have. (I have had 12 treatments so far) and some treatment cycles I noticed nothing! Other treatment cycles I had some pretty bad fatigue (I work 40+ hours a week as a lawyer and am very active with my two children, and do all fo the shopping, cooking, etc. for ur family...so fatigue is relative.). For a few of the treatment cycles I felt like I was stating to get the flu (chills and aches etc.) but it never developed into the flu and just went away....so I know it was the Keytruda. Other than these, I have had no side effects....though I have found myself with a very very unusually short temper and irritated with my family which I had never felt before. I don't know if this is related to the Keytruda or something else.
TeamRosie wrote:Hi Cynthia,
Thank you SO MUCH for posting your story about your Keytruda success. As a direct result of your post and this thread, my Stage IV MSS mom had an incredibly encouraging appointment this past week with Dr. VanDeusen at OSU (we live in Cincinnati) and will begin Keytruda in the next week or two.
For those following along, here's her backstory - my mom was diagnosed in 2014, stage iv, liver mets. In that time, she's been through many, many rounds of FOLFOX, FOLFIRI, and Lonsurf, as well as a liver resection, HAI pump insertion, radiation, and APR surgery. She's also had treatment, second opinion consults, and/or clinical trial consults at MSK, Dana Farber, OSU, and Sarah Cannon in Nashville. Currently she has 6 small lung mets and a suspicious lymph node. Liver is clear. Since being on FOLFOX and Lonsurf this past year, she continued to have slow but clear growth of her lung mets. Her local oncologist was unsure what to do next, but she is only 62, in great health otherwise, and has tons of energy, so she is not giving up the fight. We began exploring clinical trials and recently pushed for Foundation One testing of one of her lung mets, which revealed that she has a tumor mutation burden of 19(!!) and some significant frontline mutations (KRAS and others). She participated in a clinical trial at Sarah Cannon (https://clinicaltrials.gov/ct2/show/NCT03013491). First scan was stable, second scan showed growth just larger than 20% for some of the lung mets. There is a question as to whether that growth was pseudo-progression because of the immunotherapy trial drug, but the sponsor removed her from the trial. At this point, we began exploring other trial options but also began looking for other avenues outside of a trial.
After reading Cynthia's original post in this thread and her updates, we pushed my mom to go back to Ohio State for a consult with Dr. VanDeusen. Because of the results of her Foundation One testing and and the success of other cases, Dr. VanDeusen agreed that trying Keytruda is a logical next step. We have to clear some insurance related hurdles, but infusions should start in the next week or two.
A few takeaways - PLEASE push your doctors to do full genomic (i.e., Foundation One, Caris, etc.) testing of your cancer. Every single stage iv patient should have this testing. Also, it is SO important to educate yourself as much as possible on this disease and treatment developments. This forum, the COLONTOWN facebook groups, and websites like OncLive are great resources. Finally, you must push your doctors and advocate on behalf of yourself or your loved one who is the patient. The squeaky wheel gets the grease. My mom's been squeaking the wheel since 2014 - there is hope for stage iv patients!
I hope that in a few months, I will come back with a post on my mom's Keytruda success. Until then, thank you again Cynthia!!
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