Welcome to CRC 101!
The Basics
Biomarker Testing And Me
All About Scans And Imaging
Chemotherapy And Targeted Therapies
Radiation
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How does chemo fit into my treatment plan?

The treatment plan that your oncologist or care team recommends will depend on a number of factors:

Metastatic colorectal cancer has 4 total lines of chemotherapy. If you experience tumor growth on the first line, you move on to the second. It’s important to know that as you go through the lines of treatment, chemotherapy can become less effective. Therefore your treatment goals may change as well, from aiming for tumor shrinkage to stability. It’s a good idea to speak with your oncologist on a regular basis about your care goals. 

Colon cancer

This chart shows the standard treatment protocols for Stages I to III following surgery for colon cancer:

Image: NCCN Guidelines for Colon Cancer

Stage I

If you are diagnosed at stage I, you’ll have surgery to remove the primary tumor, followed by regular monitoring. Chemotherapy is not recommended to treat stage I tumors.

Stage II

If you are diagnosed at stage II, you will have surgery to remove your tumor. Chemotherapy is not recommended for low-risk stage II tumors, particularly MSI-H tumors. If your tumor is MSS and classified as high risk for recurrence based on surgical pathology, FOLFOX or CAPOX chemotherapy may be recommended.

Stage III

If you are diagnosed at stage III, you will have surgery to remove your primary tumor. Many patients have surgery first, followed by 3 to 6 months of FOLFOX or CAPOX, depending on your risk for recurrence. Patients with higher risk for recurrence will benefit from a longer course of chemotherapy.

If surgery is not an option based on the size or location of the tumor — or other health issues — you may have chemotherapy or radiation. If those treatments succeed at shrinking the tumor, then surgery may be possible.

If your cancer is MSI-H, you may be eligible for immunotherapy. 

Diagnosed: November 2021

Stage: III

Type: Colon cancer, with four lymph nodes affected

I was diagnosed with stage 3 colorectal cancer in November 2021. I had hand-assisted laparoscopic surgery on November 22, 2021 to remove a 10-inch tumor in my sigmoid colon. I had 4 lymph nodes affected, but the tumor had not gone completely through sigmoid wall.

I was released on Thanksgiving day and started FOLFOX on January 2, 2022. I have just had my third cycle of chemo.

After my first cycle, I immediately noticed increased cold insensitivity in my fingers and toes. I have read posts about icing, but I didn’t think that I needed to do it. However, it seems that the cold insensitivity is a cumulative effect, so I may start icing at some point.

Unfortunately, I had Covid recently, which delayed my last treatment by a week. But, overall I am doing well and my oncologist is very positive about my prognosis. Although I am still early on in treatment, I’m pretty sure it’s gonna take more than this to take me out. But for now, I just try to focus on staying positive and getting through my treatments.

Stage IV

If you are diagnosed at stage IV, you will probably have chemotherapy as your first treatment. This is usually FOLFOX, FOLFIRI or FOLFOXIRI plus a targeted therapy (Avastin, Vectibix or Erbitux, depending on your tumor biomarkers). However, some patients may be offered immunotherapy as a first-line treatment.

Your doctor may describe your disease as “incurable.” However, there are many stage IV patients in COLONTOWN who have got to NED (no evidence of disease) status.

Listen to their stories here:

 

Here are the chemotherapy options for stage IV CRC:

Regardless of your treatment plan, you’ll be monitored with scans every two to three months to assess how treatment is working. If you have tumor growth while on chemo, your oncologist will probably switch you to a different chemo regimen.

For example, if you have tumor growth while on FOLFOX, you may be switched to FOLFIRI. If you have progression on both FOLFOX and FOLFIRI or FOLFOXIRI, you’ll probably be offered either Lonsurf or Stivarga. Lonsurf is often given with Avastin.

Following an initial three to six months of chemo, some patients have a good response and significant tumor shrinkage. Depending on the location, number, and size of your tumors, you may be offered surgery at this point.

Many stage IV patients are able to manage their disease very well, over a long period of time, using a combination of chemotherapy, targeted drugs, surgery and other local therapies such as radiation and ablation. 

The following chart shows some common treatment protocols involving surgery if you’re diagnosed with stage IV colon cancer:

Rectal cancer

Stage I

If you are diagnosed at stage I, you’ll have surgery to remove the primary tumor, followed by regular monitoring. Chemotherapy is not recommended to treat stage I tumors.

Stage II

If you’re diagnosed at stage II, you will have surgery to remove your tumor. Most stage II rectal cancer patients will need further treatment after surgery. 

This usually involves six months of a combination of radiation and FOLFOX/CAPOX chemotherapy — or FOLFOX/CAPOX alone. Although further treatment is usually recommended, a “watch and wait” approach may be appropriate in some very low-risk cases.

Your oncolost may follow the total neoadjuvant therapy (TNT) approach. This means you’ll have three months of FOLFOX or CAPOX chemotherapy, followed by long course or short course radiation — then surgery to remove the tumor. 

Some patients following the TNT approach have what is called a “complete response” to treatment. This means that the tumor completely disappears from scans! If this happens, some patients may not have surgery, and follow a “watch and wait” approach to monitor their condition. 

Stage III

If you’re diagnosed at stage III, most oncologists follow the total neoadjuvant therapy (TNT) approach. This means you’ll probably have three months of FOLFOX or CAPOX chemotherapy, followed by long course or short course radiation — then surgery to remove the tumor. 

Some patients following the TNT approach have what is called a “complete response” to treatment. This means that the tumor completely disappears from scans! If this happens, some patients may not have surgery, and follow a “watch and wait” approach to monitor their condition.

If your cancer is MSI-H, you may be eligible for immunotherapy. A recent immunotherapy clinical trial shows a 100% complete clinical response for stage III patients with MSI-H rectal cancer. This is a remarkable result! It’s strongly recommended that all stage III rectal cancer patients know their MSS/MSI-H status. If your tumor is MSI-H, bring up immunotherapy with your care team. If you have a successful response to immunotherapy, you may not have chemo, radiation or surgery at all. 

Want to learn more about the watch and wait protocol? Watch this Doc Talk with Dr. Chakrabarti:

And check out this DocTalk where Dr. Kim gives an overview of short-course radiation and the watch and wait approach to rectal cancer:

 

Diagnosed: March 2021

Stage: IIIB

Type: Rectal cancer, with three involved lymph nodes

Diagnosed rectal cancer, 3cm tumor, 11 cm from anal verge. 3 lymph nodes appeared to be enlarged, micro satellite stable. Staged 3b. 3/3/21.

Radiation: short course, 5 days. Not negative side effects.

Chemo: Capox, 6 rounds. Xeloda, no negative side effects. Oxaliplatin, Severe side effects. Infusions 3-6 done at 50% of original dose.

Signatera: Started after 2nd round of Capox. Showed negative after 3rd round, continued to be negative.

Results: Complete clinical response to radiation/chemo.

Surgery: Opted to NOT have LAR surgery. Told that my chances of a reoccurrence of cancer in same location was 20-25%. Chances of cancer metastasising is the same regardless of having surgery or not.

Treatment plan: Watch and wait (close surveillance).

First two years, MRI and Flex Sigmoidoscopy every 3 months, CT scan every 6 months, colonoscopy annually. I will also continue ie with Signatera testing.

A different approach involves long course radiation with chemotherapy, or short course radiation followed by surgery and six months of chemotherapy. Your team will help decide which is the right approach for you.

Stage IV

If you are diagnosed at stage IV, you will probably have chemotherapy as your first treatment. This is usually FOLFOX, FOLFIRI or FOLFOXIRI plus a targeted therapy (Avastin, Vectibix or Erbitux, depending on your tumor biomarkers). However, some patients may be offered immunotherapy as first-line treatment.

Your doctor may describe your disease as “incurable”. However, there are many stage IV patients in Colontown who are outliving their prognoses and have reached NED (no evidence of disease) status.

Regardless of your treatment plan, you’ll be monitored with scans every two to three months to assess how treatment is working. If you have tumor growth while on chemo, your oncologist will probably switch you to a different chemo regimen.

For example, if you have tumor growth while on FOLFOX, you may be switched to FOLFIRI. If you have progression on both FOLFOX and FOLFIRI or FOLFOXIRI, you’ll probably be offered either Lonsurf or Stivarga. Lonsurf is often given with Avastin.

Following an initial three to six months of chemo, some patients have a good response and significant tumor shrinkage. Depending on the location, number and size of your tumors, you may be offered surgery at this point. 

Many stage IV patients are able to manage their disease very well, over a long period of time, using a combination of chemotherapy, targeted drugs, surgery, and other local therapies such as radiation and ablation.

Diagnosed: May 2017

Stage: IV

Type: Colon cancer, liver metastases

My name is Jessica, and my husband Will was diagnosed with Stage 4 colorectal cancer (CRC) in May 2017 when he was 48 and our kids were 7 and 10. Will developed a sharp pain in his side on a Sunday night and saw his doctor Monday morning. His bilirubin was 2.0 and his doctor sent him for an ultrasound, thinking it was gallstones. OMG! Gallstones! How terrifying! After the ultrasound, Will called to tell me that the tech said his gallbladder was fine but his liver was covered in masses. I thought I would break into a thousand pieces. For the next week, while no one used the word ‘cancer,’ I made appointments at [two cancer centers]; Will had a colonoscopy, CT scan, and biopsy- confirming Stage 4 CRC with “innumerable metastases to the liver.” Our oncologist told us Will needed “chemo for life,” which would give him maybe as much as a year to 18 months. The scans showed every slice of liver was covered- over 100 tumors… and the salty taste in the back of Will’s throat was the beginning of liver failure. 

He scheduled port placement two days later and Will’s first chemo three days after that. I asked the oncologist how Will could be cured, and he shook his head. I pushed him, “Will walks back in your office in five years, cancer free. Tell me how he got there.” He sighed and said, “IF he had an extraordinary response to chemo and IF we add in either Vectibix or Avastin and he had an extraordinary response to them and then IF the tumors shrank in such a way as to clear a section of his liver and IF he could then have a liver resection…” he trailed off and looked at me. “You have to understand that with each ‘and IF’ the window gets smaller and, for your husband, there are too many Ifs and the window is closed.”

I don’t say this to blast an excellent oncologist, who probably saved Will’s life by convincing us to cancel our [other cancer center] appointment so Will could start chemo immediately… but I think many oncologists veer away from offering hope because they’re scared of offering “false hope.” Hope is essential. Any person diagnosed with any cancer has a chance at beating it. You never know if you’re going to be the person with the astounding response to chemo or who finds just the right trial at just the right time. 

I obsessively researched “How to cure Stage 4 CRC” – frozen lemons, special salads, soursop, etc. I ended up with seven single spaced pages and then I set out to disprove each item. Anything I couldn’t disprove, that had real science behind it, we put Will on (Fucoidan+AHCC, Resveratrol, Theracurmin, Milk Thistle, Beta Glucan, low dose aspirin, Vitamin D, InflamAway). We also switched to a diet that was anti-inflammatory, anti-glycemic, vegan + fish, changed his sleep patterns so he slept “during the dark hours,” stopped watching action movies (too much cortisol) and only watched comedies (to release oxytocin.) The books I found helpful were The End of Illness, Integrative Oncology, Radical Remission, Being Mortal, Complications, Healing Foods and Love, Medicine and Miracles. I was so lucky to find wonderful Tom Marsilje’s blog, The Adventures of Living Terminally Optimistic, and through him, to find COLONTOWN.

Will’s first scans showed a 70% reduction and we were excited to meet with a surgeon, but our oncologist said, “No one who started with your volume of disease in their liver has ever had successful surgery.” At our second opinion appointment we heard the same thing. But our third appointment meeting at [another cancer center] was completely different – the surgeon took Will on as a patient and immediately sent us to see a wonderful liver surgeon. When I told him what our previous doctor had said, this surgeon told me there just wasn’t recent enough data to know but “if that’s true, then maybe your husband will be the first!” Will’s tumors continued to shrink, and the […] surgeons discussed surgery at every scan. Finally, Will had a combined liver and colon resection in January 2018. He had 6 rounds of “clean up” chemo after but since the pathology showed the removed liver tumors were necrotic, his surgeon considered him NED after the surgery. 

He just had his most recent scans last Monday, October 12, 2020, and he’s now been NED for 2 years and 9 months!!I know we got incredibly lucky; I know that we didn’t “do” this. In some ways, I can’t make sense of it, but I’d like to share a few things I learned along the way:

  1. Your oncologist is WAY more than just a prescriber of chemo. You need to find someone you can really communicate with, someone who listens to and fights for you.
  2. You deserve to feel as good as humanly possibly while you’re going through chemo and feeling better will aid you in your fight. See a nutritionist, an acupuncturist, a palliative care doctor, whatever you need. Don’t assume that because you’re on chemo, of course you’re going to feel terrible. Keep advocating for yourself.
  3. “Not operable” means “Not operable right now.” Nobody knows how you will respond to treatment. We always tried to have back-up plans for our back-up plans. Will only had 4 mutations, and none were actionable, so we didn’t ever have any great trials in our back pocket- but I would ask our doctor what the next step would be if the chemo stopped working tomorrow, and I always tried to show up with a couple of new trials to chat about.
  4. Educate yourself. This not only empowers you, but it affects the way medical folks interact with you. I found this to be especially helpful in the ICU after Will’s surgery.
  5. This is obvious, but I have really recognized that life is finite and we have no idea when ours will end. I’m learning to embrace the NOW, to love that “this moment” Will is healthy, “this moment” we are all together. Will is a great protector of his privacy, not from all of you wonderful people but from the powers that be at Facebook, so I can’t send photos of our loving family. BUT I can send these pics of Scout, the husky that we adopted once Will was out of treatment.

Want to chat with other people in the same stage as you?

Join one of our COLONTOWN Facebook groups:

  • 1st Avenue (Stage I patients)
  • 2nd Avenue (Stage II patients)
  • 3rd Lane (Stage III patients)
  • Four Corners (Stage IV patients)
  • NEDS Ballroom (Patients with current or past NED — no evidence of disease — status)

Want to join? Fill out the registration form here.