The Colon Club

Hi everyone,

I'm writing this from the hospital room after I've been informed I have colon cancer with extensive metastases to my spine (from my neck to my tailbone), brain, liver, lungs, ovaries, knees, shoulders, and pelvis. Obviously I am in shock and know this is very, very, very, extremely bad. I had very few symptoms apart from intermittent diarrhea and a sore back for the past few weeks.

I'm 36 years old and the mother to a gorgeous 5-month-old (Amelia) and loving wife to my amazing husband of nearly 12 years.

To have any chance at all of surviving this for a few years, given my young age and the fact that I've had no treatment at all so far, what would you do in my shoes? Which hospitals and doctors would you recommend? What treatments would you pursue? Doctors at my local hospital are encouraging me to immediately seek help from a major cancer center and have floated terms like immunotherapy, radiation, and chemo--would any of these give me a chance?

I can't think straight and know I need a step-by-step plan right this second. I live in Atlanta, Georgia, and can travel anywhere immediately. I'm willing to do WHATEVER it takes to give me a shot at having longer with my baby girl. Thank you immensely for any help you can provide.

Wow, I don't have any advise just support and prayers. There are wise people here who can offer more.

First off, don't panic! . Easier said than done, I know. My husband also had extensive metastatic spread at diagnosis in Nov 2016 and he;s still here fighting today.
We are also in Atlanta Georgia. If you are not already I would go to Emory university hospital, they have access to some of the latest clinical trials and will be aggressive with your treatment at your young age.
You will really need to know the mutational status of your tumors before you decide on a plan of action and will determine if you are eligible for immunotherapy .

Here is a list of the top cancer hospitals in the country.
Best Hospitals for Cancer
https://health.usnews.com/best-hospitals/rankings/cancer

In Atlanta, there is an NCI Designated Cancer Center
Emory Winship Cancer Institute
https://winshipcancer.emory.edu/patient-care/cancer-types/colorectal-cancer.html

You must be completely shell-shocked right now. Just remember, nobody knows your expiration date. My husband was given six months after his rectal cancer recurred; that was two years ago.

The first thing I'd want to know in your situation is whether my cancer is MSS or MSI and what specific mutations it has. This information will help determine which drugs (chemo and/or immunotherapy) will be most effective against the cancer. It will require a biopsy in order to get tissue for testing. My husband was diagnosed during a colonoscopy and they took samples at that time. Definitely get an appointment with whatever cancer center you want (I'm not from the area so I have no recommendations on that) but if it's not soon enough for you, ask your local doctor if they can help you get started on the testing.

I am so sorry! This diagnosis of nothing, just living your normal life to stage 4 cancer is so shocking and scary. We live near MD Anderson but did not get very good answers and responses from them regarding the extent of DH's cancer. We sought out a specialist at Memorial Sloan Kettering in NYC and got a much better treatment plan. With such a young child involved who needs you, your desire to fight is going to fuel you. Let it. Take it and live off it to fight. I would reach out to all Major cancer centers ASAP and see who can give you viable options. Mayo, Cleveland Clinic, Emory, MSKCC, MDAnderson, etc. Be persistent. Get family and friends to call too.

kandj wrote:I am so sorry! This diagnosis of nothing, just living your normal life to stage 4 cancer is so shocking and scary. We live near MD Anderson but did not get very good answers and responses from them regarding the extent of DH's cancer. We sought out a specialist at Memorial Sloan Kettering in NYC and got a much better treatment plan. With such a young child involved who needs you, your desire to fight is going to fuel you. Let it. Take it and live off it to fight. I would reach out to all Major cancer centers ASAP and see who can give you viable options. Mayo, Cleveland Clinic, Emory, MSKCC, MDAnderson, etc. Be persistent. Get family and friends to call too.

This is great advice.
It's good that your local hospital suggested a major hospital. It's easier to follow that advice than to be questioning it on your own.
Do whatever it takes and do it quickly. Every day and week can make a difference as far as starting treatment.

I am very sorry.
I would take a look at your MSS/MSI status. If you are MSI you may respond very well to immunotherapy. Somebody has already mentioned immunotherapy to you??
I would also look at your pathology report and mutation status. I would treat cancer according it's mutation status if MSS.
Major cancer center is excellent idea.
I am a patient of Dr. Kemeny at MSKCC in NY and Dr. Ballard at Piedmont Cancer Institute in Atlanta.

Hugs,

Thanks so much, all. I'm still in shock and denial to be honest. How can this be real life???

I haven't yet received the final pathology report. How do I go about finding out if I'm MSI/MSS for immunotherapy purposes? Will that be included in the full report?

Also, as far as clinical trials go, how do I go about finding out which one(s) I might be eligible for? How long does it take to enroll in one and start treatment? I'm already in considerable pain from the spinal lesions and am very concerned that I'm going to run out of time before I can even try any treatment. I'm trying so hard to stay positive and upbeat for my family but this all just plain sucks honestly. Thank you all so very much for your help.

Just wanted to send you prayers and lots of positive wishes that you find the right treatment plan and get help soon!

Remember no one fights alone! You've come to the right place for support and guidance. You deserve the very best medical treatment possible. Hopefully immunotherapy is an option, it has worked some miracles for members of this forum.

Take care and let us know how you're doing

Shana

I am at a loss for words adequate for what you are going through. My only comment/recommendation would be to use a multi-disciplinary practice/institution whose various experts (oncologist, radiologists, surgeons, nutritiinist, counselor, social worker, etc.) can work together closely and in a timely fashion to advance your care/treatments.

Also, do not let the anxiety and fear (both very normal) rob you of your joys ... enjoy spending time with your precious daughter and don’t focus on what is to come - enjoy every second of the here and now. A strong mind will help your physical recovery.

SoConfused wrote:I am at a loss for words adequate for what you are going through. My only comment/recommendation would be to use a multi-disciplinary practice/institution whose various experts (oncologist, radiologists, surgeons, nutritiinist, counselor, social worker, etc.) can work together closely and in a timely fashion to advance your care/treatments.

Also, do not let the anxiety and fear (both very normal) rob you of your joys ... enjoy spending time with your precious daughter and don’t focus on what is to come - enjoy every second of the here and now. A strong mind will help your physical recovery.

I can only quote and send you a lot of positivity and strenght.

Claudia

Hi , others have given you the best advise and they have insight into managing this disease . I just want to add that you are not alone . We as a family have seen just how powerful chemotherapy can be for some people . In a stage 4 setting it is more important how you respond to treatment and there in lies the hope .
Take special care,
Stu

We had 1st day and 1st week actions for an immediate, strong counterattack with some of the best "luck". My wife's colon cancer was far worse than we knew but we made it work anyway.

I'll list important tools we've used and improved on, that you can do yourself, today.

1. Get a superchemistry blood test with extra cancer markers.
Potentially a big hospital is fastest (report today possible) but will often bog down for days or longer. The other question is whether they accept patient requests/demands for uses (extra tests) when they don't understand about underutilized research. For you, these tests are especially important to spot problems and important opportunities, asap. Unfortunately the average medical team is not wired into your situation, might balk over $100-$300 of "unnecessary tests", and often bully/initimidate patients with obstruction and chuckles.

However, you can get a rush order yourself for a blood draw through a national blood lab on the phone, perhaps Life Extension at 1-800-208-3444

Until (if) you get extended information from surgical biopsies and (slow) genetic tests, these extra, initial blood tests can help fill many gaps, today and tomorrow. Already 8 years of tomorrow for us.

2. Immune boosts and hitting common targets
Metastatic colorectal patients typically have major immunosuppression, depleted lymphocytes, anemia, and some gross or extreme nutrient deficiencies/depletions, all interacting for the worse. Cancer crossing the blood brain barrier is likely a (rare) symptom with these problems.
a. Fastest (e.g. Walmart): 800-1600 mg cimetidine, megavitamin D3 (15,000-60,000 iu) and megavitamin C (4000 - 16,000 mg/day), 81mg - 100 mg aspirin - all these per day
The higher megavitamin D3 levels, especially at 50 -100,000 iu/day use extra magnesium and menatetrenone (MK-4 type of vitamin K2) with no explicit calcium supplements allowed (incidental calcium contained in supplements limited to 250-400 mg per day)
b. rest of what we used, initially: these + modified citrus pectin, usually in a health food store or online

My wife recruited a granulocyte army more than 10x larger than her lymphocyte stock and destroyed much of her cancer in the first few weeks. None of our doctors have tried or seen this before.
Our story and a summary our first steps.

Longer term, you have several major treatment possibilities.
1. If your biopsy is MSI(H), a small percentage of mCRC patients, then they might use a PD 1 inhibitor that can have dramatic effects, right off the bat.
2. Chemo Folfox (or Xelox) + Avastin has been the typical first mCRC treatment for some years now. Sometimes Folfiri is used instead.
3. Metronomic chemo and immunochemo. Developed in Japan for oral chemo+PSK+cimetidine, and in the US, for oral chemo + Celebrex (celecoxib). Thesse are what we chose with some therapeutic extras. Some of our stuff crosses the blood brain barrier.
4. Supportive or even therapeutic nutrition. For us, so far, with carefully selected molecules, tolerated maximums have been the most responsive.

A cancer diagnosis is extremely unsettling.Have you just found all that out from your current stay in hospital? What a lot to take in. My heart goes out to you at this time especially while you take it all in and find information on treatment etc. Have you had surgery as yet? Best wishes to you