The Colon Club

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.

In solidarity,

Trevor
(My handle, Reviresco, is Latin for ‘I shall flourish again’. It is the motto of our Scottish clan, the Maxwells)

I rarely publish specific details online ... BUTT
I am Scottish (West Lothian) and Icelandic (Rekyavik)
AND was one of the lost generation who actually studied LATIN in high school

SO I will also give you :
" Dum spiro spero " ... WHILE I BREATHE ... I Hope

Then I will envision my liver tumor shrinking, fading, and poof, disappearing from my life forever.

WORD !!

Harmony on the Journey Bro'
CRguy

Hi ,

I certainly hope the treatment allows you to flourish . It has been wonderful reading the journey of Immuotherapy and how fantastic of you to take the time to thank the people here for documenting it . I have also used their experience to help a friend .

I have a friend who is a “ Maxwell “ . As a Scott myself still living on Scottish soil I send my greetings. I look forward to hearing how you progress .

Take care ,

Stu ( My son’s Scottish name! )

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.

In solidarity,

Trevor
(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

I had my first infusion of Keytruda yesterday, and so far, it’s WAY easier than chemo. My infusion lasted 1/2 an hour, and I felt the same walking out as I did walking in. I woke up this morning feeling achy and sore, but not bad. My tumor burden is fairly low, my CEA just creeped up to 10. I too am on Fent patch, and have pain from surgeries, but I’m not totally couch ridden. I know there could be an incoming storm of auto immune diseases, but I’m not on chemo!

Trevor, best of luck on your immuno. Hope it works as well for you as it has for me.

CRguy wrote:I rarely publish specific details online ... BUTT
I am Scottish (West Lothian) and Icelandic (Rekyavik)
AND was one of the lost generation who actually studied LATIN in high school

SO I will also give you :
" Dum spiro spero " ... WHILE I BREATHE ... I Hope

Then I will envision my liver tumor shrinking, fading, and poof, disappearing from my life forever.

WORD !!

Harmony on the Journey Bro'
CRguy

Thanks CRguy! I had the option to study Latin in high school and wish I did. "Dum spiro spero" is going to be a new sticky on my inspiration board. Many thanks and much harmony!

stu wrote:Hi ,

I certainly hope the treatment allows you to flourish . It has been wonderful reading the journey of Immuotherapy and how fantastic of you to take the time to thank the people here for documenting it . I have also used their experience to help a friend .

I have a friend who is a “ Maxwell “ . As a Scott myself still living on Scottish soil I send my greetings. I look forward to hearing how you progress .

Take care ,

Stu ( My son’s Scottish name! )

Thank you! My father has visited Scotland and Caerlaverock Castle. He met with many other Maxwells during his trip. We trace our lineage to the mid- to late 1600s when the English sent Scottish prisoners to New England to work in the mills here. I hope to bring my family to Scotland sometime in the next few years. Maybe we can say hello in person!

Stewsbetty wrote:
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

Great to hear from you, Beth! Thanks so much for sharing your experience on Keytruda. It must have been awful to feel so sick and in pain, and then so awesome to see the results! I'm so happy for you and inspired by your story.
- Trevor

Pyro wrote:I had my first infusion of Keytruda yesterday, and so far, it’s WAY easier than chemo. My infusion lasted 1/2 an hour, and I felt the same walking out as I did walking in. I woke up this morning feeling achy and sore, but not bad. My tumor burden is fairly low, my CEA just creeped up to 10. I too am on Fent patch, and have pain from surgeries, but I’m not totally couch ridden. I know there could be an incoming storm of auto immune diseases, but I’m not on chemo!

Thanks Pyro! I'm really lucky because my tumor burden is almost negligible. CEA measured at less than 0.5 last week. So I start this process in a position of strength. I will be doing the Opdivo/ Yervoy combo every 3 weeks for 4 treatments, then switching to only Opdivo. My oncologist said I could have the Opdivo once a month. Apparently this is a recent change in the protocol. I wish you success on Keytruda and look forward to updates from you.
Trevor

plastikos wrote:Trevor, best of luck on your immuno. Hope it works as well for you as it has for me.

Thanks Plastikos. I appreciate all the advice you've provided along the way. You and Henry123 are among the main reasons why I've pushed hard for immunotherapy. Keep on truckin'..

Reviresco, I had my fourth Keytruda infusion yesterday, and so far no identifiable side effects. My only known masses were a tiny 5mm subcapular liver met and two enlarged nodes in tthe porta hepatis, and so far I don't seem to have experienced the "false progression" where everything swells up with attacking t cells...or if I have, I can't really feel it. Of course, I imagine things going on with every twinge in the right upper area!

I'm curious: why did you and your oncologist decide on opdivo+yervoy vs keytruda? My oncologist suggested the opposite choice, becaues he said it was generally easier on the body.

But who cares, as long as it works! Best of luck to you.

Greetings!
Thought I would join in.
I started Keytruda (Pembro) in Oct 2015. No other treatment was working and I was still experiencing disease progression, even after 2 surgeries. By the time I got on the drug my lymph nodes were what was left with disease. I was feeling pretty good not being on chemo so I didn’t have any side effects, but the longer I was on it the more my immune system started acting up. I had 2 lymph nodes lighting up...one cleared up within 3 months. The other one took almost 2 years! I have a hartmans pouch ( a little bit of colon left) and that started acting up with colitis symptoms after about a year. Then about a 1 1/2 years in I developed a cough that was determined to be asthma...
It was then my scan showed NED.
I just had another scan (early due to the DVT/PE) that still came back NED! So that makes 17 months now! I have not had any treatments in that time.
It is exciting how well this drug works when it works! I pray you are in the it really works team..as well as continued prayers for the mss group that they will figure out what will work for them!
Wonderfully made

My Husband starts Keytruda next week. He is MSI H has Peritoneal carcinomatosis and is in bad shape - has anyone on here had long term success with this that also has PC??

Thank you!

Wonderfullymade wrote:Greetings!
Thought I would join in.
I started Keytruda (Pembro) in Oct 2015. No other treatment was working and I was still experiencing disease progression, even after 2 surgeries. By the time I got on the drug my lymph nodes were what was left with disease. I was feeling pretty good not being on chemo so I didn’t have any side effects, but the longer I was on it the more my immune system started acting up. I had 2 lymph nodes lighting up...one cleared up within 3 months. The other one took almost 2 years! I have a hartmans pouch ( a little bit of colon left) and that started acting up with colitis symptoms after about a year. Then about a 1 1/2 years in I developed a cough that was determined to be asthma...
It was then my scan showed NED.
I just had another scan (early due to the DVT/PE) that still came back NED! So that makes 17 months now! I have not had any treatments in that time.
It is exciting how well this drug works when it works! I pray you are in the it really works team..as well as continued prayers for the mss group that they will figure out what will work for them!
Wonderfully made

I found my answer in another post. I hope for your results!