Reviresco wrote:Hi friends,
I’m going for my first immunotherapy infusion on Monday. It’s the next step in my battle with metastatic colon cancer.
Three months ago, I had surgery for a single metastasis in the right lobe of my liver. Got scanned a few weeks ago and there is a new met in the left lobe.
I could go for surgery again, but the odds are high for another recurrence. Because I have Lynch Syndrome and am MSI-H, immunotherapy is my best hope to get to NED and stay there.
If anyone wants to share their experiences on immunotherapy drugs, please share.
But most of all, I just want to say thank you.
Thank you to all the Colon Club members who are living and fighting this disease while sharing your knowledge, wisdom, and inspiration.
Thank you to the immunotherapy pioneers – people who participated in trials, often knowing the research would most likely benefit not themselves, but the patients of the future like me. Thank you to those who are no longer with us, and to the survivors, some of whom are essential voices on this forum.
Because of you, I have genuine hope. Hope that I might see my daughters, who are now 13 and 11 years old, play more softball games and sing at more school concerts. Hope that I might be there at graduations, marriages, maybe even the birth of grandchildren.
To all the chemo and immunotherapy pioneers, the phrase ‘thank you’ somehow doesn’t feel close to adequate. I am in awe of you.
To my fellow warriors who are MSS, I will keep advocating with you for the next generation of treatments that will make this disease a thing of the past.
I will be thinking of you when I’m sitting in my treatment chair next Monday. Then I will envision my liver tumor shrinking, fading, and poof, disappearing from my life forever.
(My handle, Reviresco, is Latin for ‘I shall flourish again’. It is the motto of our Scottish clan, the Maxwells)
My hope came after beginning immunotherapy. I will never forget that feeling. A new day. A fresh start. Real anticipation for future events. Anyway, on to experience .
I was in really bad shape when I started Keytruda. Lymph node tumours all throughout abdomen, chest and neck. I was on the fentanyl patch and could only leave the couch for about 15 minutes at a time. My first round of pembro was excruciating. Infusion was a breeze and there wasn’t any diarrhea or vomiting. However, I believe because it worked my immune system went into overdrive attacking all of the tumours. My thought is that this created inflammation everywhere. It felt like I had the worst flu ever. I was incredibly weak and sore. At the time, I didn’t realize it was working and just thought I was getting closer to death. And I wanted to die! Didn’t want to live in that weakness and pain anymore. Toward the end of the 3 weeks though I started to feel marginally better. I went back for my next infusion with fear but that cycle was so much better. Each day I became stronger and my pain lessened. After my 3rd dose I was able to start weaning off the pain meds and my scan showed that my tumours had all shrunk my half.
I am currently in cycle 26 and have not had any real side effects (minor leg itching, dry mouth). My disease is gone except for one slightly inflamed lymph node. I was able to return to work PT this year.
I tell you about the first cycle to prepare you but if you don’t have a lot of disease you might not have such a strong reaction. I believe my response was due to the amount of disease and how well my immune responded to finally seeing the “enemy”.
That said it is important to keep your eyes open for signs your immune system is attacking your body not the disease. Best of luck and hope to hear you respond as well as I have! Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left