The Colon Club

Hello,
I'm rather new to this forum and to the world of cancer (as a caregiver) and this forum has been crazy helpful. I've learned SO MANY things that changed my mom's treatment plans and will likely change them for the better in the future.

...However, most things I've learned required extensive research here as well as on google. I was wondering if we could prepare a simple facts and to-do-list for others?

For example, I didn't know that getting CEA and CA199 before surgery would be crucial for knowing if they're good markers, so we missed that opportunity. It also took me some time to learn that biomarkers do not work the same for everyone.

Anyone interested in helping me prepare such a list? We can prepare them according to staging/type to keep lists minimal and user friendly, or we can create subsets (1. Staging, 2. Tests etc.).

I think it would be ideal to keep it short and simple and we can add links to threads to make access to further information easier but I'm open to other ways to organize this as well!

Tentatively, these are the things that I have at the top of my head:

1. Stats are old, like, seriously old AND invalid (people die of other things!)
2. Get your CEA, CA199 checked before primary tumor surgery
3. LARS is a thing
4. Get a colorectal surgeon
5. Get a second opinion if you don't like your onc

This is a good idea, and will definitely be very helpful. Adding to #5, getting a second opinion at a major cancer center. And #4, a board certified colorectal surgeon

For those that show up here as Stage IV:

What makes a good candidate for HAI pump?
Standard chemo protocols?
What to expect if you have a liver resection in your future?

Following on from number 3 'LARS is a thing': ask your doctors about the possibility of watch and wait as an alternative to resection, especially if your tumour is/was very low.

You are a new person to the forum. To do list, listen to your health care provider, stay off google !I had a rectal and colon tumor, so I guess that's a plural. I went through FOLFOX, and radiation. It can be accomplished ! 7 years NED !

Things I tell people:

Read Radical Remission, a data-driven look at the commonalities across people who survive beyond the odds. Not all green juice; chapters on integrative medicine and taking a proactive approach to your health were particularly compelling to me and helped shape how I wanted to approach my cure.

Make sure you find an oncologist who is aligned to your approach and wants to cure you. The first three with whom I spoke told me I had two years. It took four tries to find someone who believed I could survive. And who turned out to be open to an integrated approach.

If your chemo regimen includes Vectibix or Erbitux, ask to start treating the rash that 90% will get prophylactically. Once it's there it is difficult to treat, and medical papers suggest best approach is to treat two weeks prior to usage. Nobody mentioned that to me until my rash was in full bloom!

Thank you all for suggestions!! Here's an updated version. I made 4 groups to organize them a little bit but please add/correct! I'm bolding parts I could use some help with.

A. The shock
1. Stats are old, like, seriously old AND invalid. They include people who died of other things and were drawn from a period when targeted drugs and immunotherapy weren't available. Not only you’re not a number, but also your chances today are MUCH HIGHER.
2. There are curative possibilities even for Stage IV. Check the forum to see many survivors! (links to topics?)

B. Initial steps
1. Get a board certified colorectal surgeon.
2. If possible, go to a major cancer center. If not, please at least get a second opinion at a major cancer center. Make sure to find an oncologist who is aligned to your approach and wants to cure you. Many here have tried more than 3 doctors before they found “the one”—the one that wants to cure you!
3. Info on staging:
(links?)
4. Ask your oncologist whether you should try to gain weight. Calculating your BMI might also help: https://www.verywellfit.com/bmi-what-is ... ex-3120088
5. Consider finding a therapist, this is a difficult process and get all the help&support you can get!

C. Treatment
1. Get your CEA, CA199 checked before primary tumor surgery. This will help a lot to see the course of your treatment. additions?
2. Get your tumor tested, learn your mutations (KRAS, BRAF, NRAS and MSS/MSI etc.)
3. LARS is a thing, ask your doctor about it. If your tumor is very low, ask about the possibility of “Watch and Wait.”
4. Standard chemo protocols: (link)
5. Managing metastases: you have lots of options!
—I remember seeing a post where someone listed all the possibilities, would appreciate if someone would link it!—
Liver: HAI, RFA, …. we could link these too?
Lungs: …….
Peritoneum: …….
Brain: ……..

D. Additional/Misc.
1. If your chemo regimen includes Vectibix or Erbitux, ask to start treating the rash that 90% will get prophylactically. Once it's there it is difficult to treat, and medical papers suggest best approach is to treat two weeks prior to usage!
2. Reading suggestions: Radical Remission, …..

One more to add: eat as much as you can before starting chemo, especially if you have already lost weight and can't afford to lose more. I wish I had focused more on packing a few extra pounds on, and less on green juices in those early days.

ginabeewell wrote:One more to add: eat as much as you can before starting chemo, especially if you have already lost weight and can't afford to lose more. I wish I had focused more on packing a few extra pounds on, and less on green juices in those early days.

This is great advice too! Were you given any specific advice on this? I think it might depend on the current situation of one's body, BMI etc?

hopie wrote:

ginabeewell wrote:One more to add: eat as much as you can before starting chemo, especially if you have already lost weight and can't afford to lose more. I wish I had focused more on packing a few extra pounds on, and less on green juices in those early days.

This is great advice too! Were you given any specific advice on this? I think it might depend on the current situation of one's body, BMI etc?

Not really. They focused on nutrition once I started chemo. But I had a good two weeks before I started when I could have been bulking up. I announced my intention to eat healthy and they reinforced that once I started chemo, the real important thing is that I eat and keep my weight up. And if the only thing I feel like eating is Frosted Flakes I should eat Frosted Flakes. (Which some days is kind of how it goes.)

I agree Ginabewell! My oncologist told me that chemo works better with extra weight. If I want something, he said eat it! He did not want me losing any weight and said that you do not start changing your diet while on chemo.

ginabeewell wrote:I announced my intention to eat healthy and they reinforced that once I started chemo, the real important thing is that I eat and keep my weight up. And if the only thing I feel like eating is Frosted Flakes I should eat Frosted Flakes. (Which some days is kind of how it goes.)

Beckster wrote:I agree Ginabewell! My oncologist told me that chemo works better with extra weight. If I want something, he said eat it! He did not want me losing any weight and said that you do not start changing your diet while on chemo.

Interesting! How would you describe yourselves on weight? My mom's OK but probably has a couple of extra kilos on her already. I asked her oncologist if I should try to make her gain weight before she started chemo, she said no need, leave her alone. Not sure if she thought I'd be force feeding my mom or she thought mom didn't need extra weight.

If others come and comment, we might either add this as a suggestion or as a question that they should talk with their medical team before chemo!

hopie wrote:

ginabeewell wrote:I announced my intention to eat healthy and they reinforced that once I started chemo, the real important thing is that I eat and keep my weight up. And if the only thing I feel like eating is Frosted Flakes I should eat Frosted Flakes. (Which some days is kind of how it goes.)

Beckster wrote:I agree Ginabewell! My oncologist told me that chemo works better with extra weight. If I want something, he said eat it! He did not want me losing any weight and said that you do not start changing your diet while on chemo.

Interesting! How would you describe yourselves on weight? My mom's OK but probably has a couple of extra kilos on her already. I asked her oncologist if I should try to make her gain weight before she started chemo, she said no need, leave her alone. Not sure if she thought I'd be force feeding my mom or she thought mom didn't need extra weight.

If others come and comment, we might either add this as a suggestion or as a question that they should talk with their medical team before chemo!

I was about 10 lbs overweight...148ilbs. At the end of every cycle, he checked my weight. By the end of chemo, I had gained 13 lbs. I never needed any of the nausea meds during my chemo....maybe from gaining weight? After chemo, I took off the extra weight.

hopie wrote:Interesting! How would you describe yourselves on weight? My mom's OK but probably has a couple of extra kilos on her already. I asked her oncologist if I should try to make her gain weight before she started chemo, she said no need, leave her alone. Not sure if she thought I'd be force feeding my mom or she thought mom didn't need extra weight.

If others come and comment, we might either add this as a suggestion or as a question that they should talk with their medical team before chemo!

I'm 5'6 and naturally thin most of my life. My "ideal" weight is probably 115 if I was eating healthy and working out. I had probably been closer to 125 six months before diagnosis and then lost 10-15 pounds without trying. So I was maybe somewhere between 110 and 115 when I got started - close to my ideal weight (if not healthy because I wasn't working out).

I started losing a few pounds a week once chemo started. After my 5th round, when in the hospital with an infection and reduced to a fluids diet, I went down to 90. During my 7 week chemo break that followed, I ate like it was my job and gained about 20 lbs. Now back on chemo I've dropped a few but I am maintaining a little more successfully now that I'm not trying to hold myself to strictly healthy foods.