Any advice appreciated..... please

[skipdow]

I was diagnosed with colon cancer 2 months ago, then after a CT was told it is stage 4 with 6 lesions on my liver. I had a near blockage in my colon removed 4 weeks ago laparoscopically and returned to regular BM 4 days later. Physically I feel fine tho am freaked out some days and feeling really lost somedays. Google does not help with that other than I found this site
What do I do now? how do I know what I should be doing or not doing? Whats the best treatment? (thats whats going thru my head a lot)
I am meeting my oncologist for the first time on monday but not sure what he will say or what I should ask or how to know if he is any good.....
I expect as I read thru the posts on this site I will learn a lot but if anyone has any advice or good reading or websites etc I would love some more information.
I find the more knowledge I have the easier it is to feel the ground beneath my feet.
Thank you
p.s. I live in BC Canada if location matters

[CRguy]

Welcome to the forum !
YES avoid Dr. Google ...
You want GOOD sites = You found US !
BC, Canada .... are you @ BCCA Vancouver ? or ... elsewhere ?

I have hands ON experience @ Vancouver, Surrey and Kelowna
Please post into this topic again if you need to chat with me,
as a new member you cannot send PMs for a while

I am meeting my oncologist for the first time on monday but not sure what he will say or what I should ask or how to know if he is any good.....

Will do my best to help you along the way BUTT we can all give you some good feedback and questions for the new Onc on Monday !!!!
.... AND I may have "trained" a few Oncs and Residents in my day ...

Just adding a link to the topic Calling ALL Colorectal CANUCKS ! which I started a while back so Canadians here could keep up to speed !
You may find some more specific info about the Canadian system here.

Cheers and Harmony
CRguy

[gfpiv]

I would humbly suggest looking into HAI / hepatic pump if your metastases are liver-limited. It involves a hockey-puck sized pump being implanted in your abdomen, which gives highly concentrated chemo (usually FUDR), but only to your liver. It can be (and usually is) given with systemic chemo during the same line of treatment. In a nutshell, not everyone qualifies, but I firmly believe I wouldn't be here, 6.5 years after a stage IV terminal diagnosis, without it. Many others on this board are in the same boat...often going from unresectable to resectable due to HAI.

A few places in the USA do the treatment - especially Sloan Kettering in New York City (Dr. Kemeny). However, I also heard somewhere that Sunnybrook has been doing it the past few years in Canada (Toronto maybe?). Maybe something to look into?

Also, may I humbly suggest trying to get as much exercise as you can (which varies for everyone); many studies say it can be helpful with colon cancer survival and blood sugar control, and may also help with treatment side effects. At the very least, you will probably feel better about yourself.

You may also want to look into possible supplemental herbs etc that may help with your treatment (Vitamin D is a common one; there are many others more controversial...but please do research and don't believe every "miracle cure" that someone tells you about). Here's the URL of my favorite site for evidence-based summaries of many herbal substances touted as having potential anti-CRC benefits:
https://www.mskcc.org/cancer-care/treat ... cine/herbs

Anyway, I wish you best of luck in your treatments. And don't despair...despite what some doctors and/or statistics may tell you, Stage IV colon cancer can be beaten!

-Chip

[Nik Colon]

Many people survive stage 4, especially if in just one organ (like liver). I agree with the above posts. Don't look at stats as they will always be outdated, plus mew meds are on the way. Best wishes

Check out DK37 stick post above (on the main page, science thread). He has stage 4 and is also a cancer researcher/developer.

[Green Tea]

I was diagnosed with colon cancer 2 months ago, then after a CT was told it is stage 4 with 6 lesions on my liver...
I expect as I read thru the posts on this site I will learn a lot but if anyone has any advice or good reading or websites etc I would love some more information.
I find the more knowledge I have the easier it is to feel the ground beneath my feet. Thank you
p.s. I live in BC Canada if location matters

Welcome to the site. You can get a lot of information from members here, but it helps to create a signature that will give people the basic information on your situation. A link to the signature creation page is here:

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

The kinds of things that you might want to put in your signature are listed in this post:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

Right now, the most important things for people to know are that you have Colon Cancer (CC), not Rectal Cancer (RC), and that you are Stage IV with multiple mets to the liver. This information should be put in your signature, because it indicates which of several first-line treatment tracks you will be channeled into.

The treatment options for Colon Cancer Stage IV are listed in the document in the link below, starting around page 25. Your oncologist will no doubt be consulting a document such as this one in order to plan the next steps in your treatment.

NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Colon Cancer, Version 2.2015, 143pp
https://www.tri-kobe.org/nccn/guideline/colorectal/english/colon.pdf

Since you are in Canada, you might want to have a look at, or download, "My Cancer Companion", from the Colon Cancer Canada website:

http://coloncancercanada.ca/my-colon-cancer-companion/

[Maia]

I would humbly suggest looking into HAI / hepatic pump if your metastases are liver-limited. (...) I also heard somewhere that Sunnybrook has been doing it the past few years in Canada

Yes, HAI pump is offered in Canada in Sunnybrook, TO:
http://sunnybrook.ca/content/?page=colo ... emotherapy
http://sunnybrook.ca/media/item.asp?i=988

This is Dr Karanicolas (Sunnybrook) https://www.youtube.com/watch?v=9qWkSKuWBJY
This is Dr Kemeny (Memorial Sloan Kettering, NY) https://www.youtube.com/watch?v=dRcMMC11yZ0

Both doctors are part of a group of experts who observe same guidelines, so you're on good hands also in Canada:
Hepatic arterial infusion pump chemotherapy in the management of colorectal liver metastases: expert consensus statement Curr Oncol. 2014 Feb; 21(1): e129–e136. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921037/

So great you're in search of information right before your first meeting with the onc. Best of luck!

[Maia]

Many people survive stage 4, especially if in just one organ (like liver). I agree with the above posts. Don't look at stats as they will always be outdated, plus mew meds are on the way. Best wishes

Check out DK37 stick post above (on the main page, science thread). He has stage 4 and is also a cancer researcher/developer.

Both are great advices!

[jhocno197]

Read rp1954 posts in this forum; lots of good advice. And grouseman.

[chrissyrice]

Welcome and we appreciate your posting here to ask for advice.

You are very lucky to have found this group of supportive and caring people.

Evenmore, the information here can help you find HOPE along with where the best practices are available for your consideration as you search for the best treatments for your CRC.

When I was newly diagnosed back in Oct 2009 I was not aware of how a cancer dx would change my life forever... in fact other than infertility when I was younger I had no medical or health issues.

I thought I was a very healthy and smart woman who took good care of my body through regular checkups, good food choices, and exercise.

Although, I missed scanning my rear for a while, when I had some change in bowel habits... nothing alarming, my primary doctor made me an appointment for a colonoscopy and I never for a moment thought it would show anything.

In fact, I almost cancelled for what I thought was an important meeting at work... but I chose correctly.

Most importantly I was very lucky to forego the local hospital and drive through the horrific Atlanta Ga traffic to a NCI ... Emory Winship National Cancer Institute (NCI) in town Atlanta. WOW what a huge difference, that made all the difference for my surgery.

I didn't know about choosing a Board Certified Colorectal Oncology Surgeon for CRC... I didn't find this out until after I found this site.

My friend worked at the hospital and urged me to get a second opinion for my surgery at Emory. I thought perhaps I just had a "simple" case of CRC ... snip and it's done and over. NOT!!

The surgery went well, but I was dx as Stage 3b and my tumor had spread outside the colon wall to the regional lymph nodes in the sigmoid colon. Dumb as I was at the time... I didn't think chemo was even necessary either. WRONG!

So the point of my story is KNOWLEDGE from the posts you will find here when you ask and search the prior years of posts and see that HOPE and so many new treatments are options for your situation as each of us has our own "twists and turns" in our cancer.

Skipdow, when talking with your Oncologist this week... please be sure of asking for tumor testing and chemoresistant and toxicology to the drug protocol that may be presented. There are many side effects that are seriously understated (at least to me) and be prepared for the possibility of these happening to a large % of people.

Glad you are here and hope you will come back and let us know about your treatment plan and never be afraid to ask for a second opinion.

HOPE!!
Chrissy

[KElizabeth]

I suggest asking your oncologist about your tumor genetics. What mutation do your tumors present and are you micro - satellite unstable (MSI) or micro satellite stable. Also is are your liver lesions resectable or could they be resectable after some chemo shrinking? Are you a candidate for radio frequency ablation?

There are several different options for treatment depending on your tumor location within your liver and on your tumor genetics. There is a great deal of information on this forum about these the topics that you can browse using the search function.

It's important to try to stay positive and reduce anxiety and stress. Staying active and having distraction such as keeping a work routine or hobbies will help. There is also Xanax if you really can't control the anxiety. It's ok to admit your scared and need something to help you calm down and sleep at night.

You can do this!
~Elizabeth

[BeansMama]

You have gotten some great advice from the previous posters. Seeing your oncologist will get the ball rolling for treatment other than surgery. You will most likely discuss chemo and the plans for it. Make sure your oncologist is aggressive when it comes to treatment. You want to fight this with everything you possibly can.

Do not pay attention to the stats, they include everything but the kitchen sink (well maybe they count that too) they aren't all that accurate.

I am also a stage IV, and I know just how scary and upsetting it is to receive that news. You will find an amazing group of people here that will help and support you through this journey.

Stage IV isn't a death sentence anymore, I have a liver met that previous doctors said was inoperable - my new surgeon is going to resect it. Granted the surgery is extremely risky but to me the risk is worth the reward.

Most of all try and maintain a positive attitude, I know easier said than done sometimes but attitude is everything in this battle. You will get tired, you will question everything through this journey, you can do this. Take it one day at a time.

I will add you to my prayer list. I hope your first appointment with your oncologist goes well.

[Marylandmaniac]

You have gotten some great advice from the previous posters. Seeing your oncologist will get the ball rolling for treatment other than surgery. You will most likely discuss chemo and the plans for it. Make sure your oncologist is aggressive when it comes to treatment. You want to fight this with everything you possibly can.

Do not pay attention to the stats, they include everything but the kitchen sink (well maybe they count that too) they aren't all that accurate.

I am also a stage IV, and I know just how scary and upsetting it is to receive that news. You will find an amazing group of people here that will help and support you through this journey.

Stage IV isn't a death sentence anymore, I have a liver met that previous doctors said was inoperable - my new surgeon is going to resect it. Granted the surgery is extremely risky but to me the risk is worth the reward.

Most of all try and maintain a positive attitude, I know easier said than done sometimes but attitude is everything in this battle. You will get tired, you will question everything through this journey, you can do this. Take it one day at a time.

I will add you to my prayer list. I hope your first appointment with your oncologist goes well.

BeansMama, I am so glad to hear the new surgeon can resect the liver met!!! When is surgery? I will definitely send prayers and good vibes your way!

SkipDow, This is a great site and I learned so much. I was shocked when I was diagnosed. 46 and no symptoms other than a little blood. WTH??? I have had 6 rounds of FOLFOX and have surgery set for Dec 14th. Mine is right on the line of rectal and colon so doctors were unsure how to even dx me. I also had one spot on my liver that luckily was small enough that I had liver ablation surgery. That was out patient and from my recent PET scan looks to be successful.
I was so worried about Chemo but I have tolerated it very well. Most people are shocked when they find out I have had 6 rounds because I don't look sick. I am shocked myself at times. I know that some people have bad reactions and I was so worried. SO my advice is just take each day at a time. I take supplements and work out (except for my infusion day and the following 3 days). I take vitamin D3 (6k iu's), turkey tail mushroom (order it off Amazon.....NIH has done studies on it that show promise), modified citrus pectin (also Amazon and I love the lime flavor) and Cimetidine (supposedly helps prevent mets). I cleared these with my doctors and I get blood work each week. So far (knock on wood) my blood work has been good. Try to stay positive and you will get through this.

[JJ2212]

Just adding a link to the topic Calling ALL Colorectal CANUCKS ! which I started a while back so Canadians here could keep up to speed !
You may find some more specific info about the Canadian system here.

I'm going to steal from CRGuy (who always gives excellent advice) and point out a link that he posted in the CANUCKS thread a while back. I think it's a really good guide for anyone starting out on this journey.

I have not spent a lotta time at Colon Cancer Canada but just reviewed their updated website and found a reference which could be a great benefit... especially to someone just starting to get into the nitty gritty of a CRC diagnosis.

It is an information book with itemized pages for journalizing treatment information, appointments, test results etc.

Available as hardcopy thru the site or as a free download, if anyone is interested
My Colon Cancer Companion

and while it addresses the Canadian patient, the overall format would be useful for anyone, including caregivers.

Best wishes
CRguy

You've gotten a lot of good advice here already. I hope you're not too overwhelmed, but if you are, fear not, that's normal. Take it one day at a time, or one minute at a time if that's what works for you.

Take care,

Janie (a fellow Canuck)

[BeansMama]

You have gotten some great advice from the previous posters. Seeing your oncologist will get the ball rolling for treatment other than surgery. You will most likely discuss chemo and the plans for it. Make sure your oncologist is aggressive when it comes to treatment. You want to fight this with everything you possibly can.
In
Do not pay attention to the stats, they include everything but the kitchen sink (well maybe they count that too) they aren't all that accurate.

I am also a stage IV, and I know just how scary and upsetting it is to receive that news. You will find an amazing group of people here that will help and support you through this journey.

Stage IV isn't a death sentence anymore, I have a liver met that previous doctors said was inoperable - my new surgeon is going to resect it. Granted the surgery is extremely risky but to me the risk is worth the reward.

Most of all try and maintain a positive attitude, I know easier said than done sometimes but attitude is everything in this battle. You will get tired, you will question everything through this journey, you can do this. Take it one day at a time.

I will add you to my prayer list. I hope your first appointment with your oncologist goes well.

BeansMama, I am so glad to hear the new surgeon can resect the liver met!!! When is surgery? I will definitely send prayers and good vibes your way!

SkipDow, This is a great site and I learned so much. I was shocked when I was diagnosed. 46 and no symptoms other than a little blood. WTH??? I have had 6 rounds of FOLFOX and have surgery set for Dec 14th. Mine is right on the line of rectal and colon so doctors were unsure how to even dx me. I also had one spot on my liver that luckily was small enough that I had liver ablation surgery. That was out patient and from my recent PET scan looks to be successful.
I was so worried about Chemo but I have tolerated it very well. Most people are shocked when they find out I have had 6 rounds because I don't look sick. I am shocked myself at times. I know that some people have bad reactions and I was so worried. SO my advice is just take each day at a time. I take supplements and work out (except for my infusion day and the following 3 days). I take vitamin D3 (6k iu's), turkey tail mushroom (order it off Amazon.....NIH has done studies on it that show promise), modified citrus pectin (also Amazon and I love the lime flavor) and Cimetidine (supposedly helps prevent mets). I cleared these with my doctors and I get blood work each week. So far (knock on wood) my blood work has been good. Try to stay positive and you will get through this.

MarylandManiac,

No surgery date yet. I go for my 19th chemo on Tuesday and I see the onc so I will be bugging him about it . I am currently waiting for them to schedule my next MRI. Once that is done I will get an appointment with the surgeons to start planning. My surgeon said it would take some time to get the surgery set because they have to get a heart lung team for me in addition to the liver surgeons I will have since they will be putting me on bypass. I'm hoping it doesn't take too long, the surgery is my chance to be NED. I would be on the operating table tomorrow if they told me to.

[KElizabeth]

I take supplements and work out (except for my infusion day and the following 3 days). I take vitamin D3 (6k iu's), turkey tail mushroom (order it off Amazon.....NIH has done studies on it that show promise), modified citrus pectin (also Amazon and I love the lime flavor) and Cimetidine (supposedly helps prevent mets). I cleared these with my doctors and I get blood work each week.

I would just add that the dose used to gain favorable results with the turkey tail mushroom supliment (Coriolus Versicolor (PSK)) is 2600 to 3000 mg per day. The capsules come in 500 mg from JDS Naturals, I take 3 in the morning and 3 at night. There's some good research on this available. It's also called Krestin in Japan. I've seen no side effects. Like Maryland Maniac said, you will need to check with your oncologist before taking any vitamin or supliments because there could be interactions or it could interfere with the mechanism of your chemotherapy drug.