Recently diagnosed

[Skylogan10]

Hi all, I just learned about this board from people posting on Reddit and thought I’d introduce myself as I welcome any and all advice and look forward to chatting with people that also have colon cancer.

I’m male, 42 and was diagnosed with colon cancer after going to the emergency room on October 8th due to stomach cramping, constipation, and vomiting. They did blood work which showed critically low hemoglobin and then sent me for a CT scan that confirmed a mass blocking my colon. They performed a right hemicolectomy the next night.

My tumour was fairly large - 10.2 x 5.5 x 2.5 cm and fortunately was located in a place where it could be fully removed. From what I gather, they were quite aggressive with the surgery (albeit laparoscopic) as they removed 86 lymph nodes along with what I assume are typical things like my appendix, ileum, omentum, etc.

The diagnosis was poorly differentiated adenocarcinoma, pT4aN0 which I understand is considered Stage 2B. I can see in my chart that the tumour is MIcrosatellite stable (MSS) which I don’t fully understand but I father my cancer is higher risk for recurrence.

I have since started a 3-month CAPOX regimen and just finished my first round. I go for round 2 on Tuesday (Dec 13). So far I’ve tolerated the chemo pretty well. I’m tired all the time but that’s nothing new as one of my main symptoms leading up to the emergency room visit was extreme fatigue. I have two kids under 4 so I blamed it on a lack of sleep but now know it was the low hemoglobin that really caused it.

The main thing bothering me though is severe diarrhea but I’ve had it since the surgery so not sure if the chemo is making it any worse than it already was. I’ve lost over 40 lbs since I first started to feel stomach cramps back in February so I’m hoping to get this under control so I don’t lose anymore weight. It’s also quite painful now and occasionally leads to rectal bleeding which of course messes with my head since I never had a colonoscopy and the surgeon said there is still a risk that I have cancer in other parts of my colon/rectum even though the CT didn’t show anything.

My wife had Stage 3c USPC endometrial cancer back in 2015 and has been NED for 7 years which really helps my mental state as I know people in worse situations often have positive outcomes. That said, my mind does wander from time to time so my moods are a bit up and down and I struggle to sleep some nights.

I met with a naturopath who has suggested I take melatonin, iron, coriolis mushrooms and vitamin D while I go through chemo. He’s also talked about potentially starting mistletoe but we haven’t gone that route yet. I’m getting a saline and multivitamin drip today which I plan to do before each round.

I’m curious if anyone has any suggestions for other supplements or other ideas that I can discuss with my naturopath/oncologist to help with treatment, diarrhea, sleep and/or anxiety. I can see there is a wealth of knowledge here and I am just starting to learn the basics of colon cancer so I look forward to learning from and becoming a part of the community here.

Cheers,
FCR

[beach sunrise]

By multi-vitamin drip, is it Myers?
Can I ask who your ND is?
Do you have any mutations? If kRAS, then I would highly suggest high dose vitamin C.
Make sure your PSK is a vetted brand such as Mushroom Science or Realmushroom, ect.

[rp1954]

Folic acid is to varying degrees a serious or limiting problem for about 50% of 5FU / Xeloda patients. Folic acid pervasively contaminates grains and grain/flour products in the US, hidden, and most common B complex and other multivitamins (some better brands or specialty products may use natural folates, L5MTHF, or leucovorin vitamer forms without the toxic folic acid form). Breakfast cereals, highly varied by particular product name, can be the worst for folic acid levels. Ruthless elimination was key for us.

We found 1-2 tablespoon full(s) of liver or liverwurst, a source of natural folate, to be more tolerable and useful than iron pills for my wife's anemia.

Glutamine 1 - 30 grams per day or large scale cabbage juice ( up to 1 liter a day) may help noticeably with healing GI toxicity related sores and problems.

We found 3 to 6 grams of PSK type Coriolus highly concentrated to best improve WBC, platelets and RBC for my wife.

We used a powder mixture of sodium or mixed buffered ascorbates, glutamine, zinc carnosine, glucosamine, vitamin K2 held directly on oral chemo sores during 5FU-folic acid toxicity. Held as long as possible in the mouth on the sore and then swish and swallowed to treat the whole GI.

Most solo Xeloda patients reduce or eliminate HFS problems with IV vitamin C twice a week. My wife did oral chemo with 3 -5 IV vitamin C per week, at 60,000 to 75,000 mg vitamin C per IV, while carrying a met cluster, presumeably histamine producing, almost like a drug addict. After removal of these mets, she lagged along at 4 - 5 days IV interval.

Some are able to increase their comfortable Xeloda dose substantially with these measures

[Jacques]

... Most solo Xeloda patients reduce or eliminate HFS problems with IV vitamin C twice a week...

High Dose IV Vitamin C
https://www.acpm.net/medical-services/high-dose-iv-vitamin-c/

[aquarian_asian]

I follow decent diet - less carb, lot fruits, vegetables and nuts. I take additional supplements like vit-D, Omega 3 (i am a egg-terian), Curcumin capsule. pls check with your doc also if you could similar stuff to support your health and any risks. I recommend to watch " how to starve cancer" (Dr William Li) - if that helps too. I read his book completely and i feel confident.

Pls keep in mind that each one of us are different in terms of our own body, reactions and risk factors etc. So do checks from your side thoroughly and follow what is best for your situation. Best wishes. thanks,

[Peregrine]

Hi all, I just learned about this board from people posting on Reddit and thought I’d introduce myself as I welcome any and all advice and look forward to chatting with people that also have colon cancer...

Cheers,
FCR

FCR -

Welcome to our forum. If you are looking for someone to chat with about your colon cancer, you might try registering for one of the CRC buddy programs out there:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=66186&p=512503#p512503

I'm not sure exactly how these programs work, but it might be worthwhile checking them out.

I had a left-side T4 rectal cancer, not a right-side colon cancer, so what I would have to say might not apply to you.

Take care ...

[roadrunner]

Skylogan10:

Welcome. This forum is a really great resource. The posters bring lots of experience and a diversity of perspectives and approaches. Reading about similar circumstances, treatments, and experiences to yours can be very helpful in informing your own decisions and just in staying sane. Like Peregrine’s, my path is pretty different from yours, so at this point, I don’t have a ton of observations about what you’ve written.

I would venture to throw out the following, very high level comments: From what I know, MSS status alone is not a bad prognostic factor, though MSI does open up treatment options (primarily immunotherapy, which doesn’t at present work well for most MSS patients; that is very possibly the next frontier in CRC treatment). Poor differentiation is an issue,I believe, so it may be worth it to research there. Overall, as I suspect you know, the trick is to avoid metastasis. You didn’t say, but I assume you’ve been scanned and came up clear. That’s a good start. It sounds like your lymph nodes came up clear as well, which is also really good.

Finally, you’ll see widely divergent views on alternative therapies, supplementation, diet, etc. You seem open to it,
And there are a number of folks on here who are very committed to it, and post often, with lots of information. My approach has been more focused on exercise (run 3 mi/day (getting to 3+), walk when I can’t run, and diet (eliminated alcohol, reduced sugar, tons of blueberries, cranberries, mushrooms, tea and coffee, veggies, very little red meat). I’m not intrinsically opposed to supplementation (e.g., there’s decent evidence supporting infusional vitamin C for various reasons), but my only caution is to always remember that your immune system is the hero here, so I’d research and watch carefully to make sure any alternative approaches do not adversely impact you there. My 2 cents.

[mobrouser]

Greetings Sky.
Your pre diagnosis symptoms were similar to many of mine but I am surprised that your diagnosis and resultant surgery occurred without a colonoscopy. Just for reference can you share where you are from?

Your tumour was relatively large, does your surgical report state how much of your colon was removed, as this could be one of the reasons for your on going diarrhea issues. My 6cm tumour resulted in 30cm of colon being removed. For me it wasn't until after I finished chemo and tried to move back to a more normal pre-chemo diet that I discovered the effects of my now shortened colon.

Did your surgeon/surgical report elaborate on why it was necessary to remove so many lymph nodes? I am not much on supplements, instead choosing to focus on diet as I try to become NED, but I would be concerned about the subsequent effects of having that many nodes removed.

Please keep asking questions here and search the archived posts in this forum. They helped me immensely.
Cheers,
Mob

[boxhill]

I, too, presented with a blockage, and had a right hemicolectomy without a colonoscopy. The surgeon vetoed waiting a day to do one, given what was seen on the ER CT.

Honestly, I've never heard of anyone having that many lymph nodes removed. I suspect that it is a transcription error. My own surical report referred to the "paddock flexure," which I eventually realized was the hepatic flexure, after spending much time fruitlessly studying anatomical illustrations!

[Rock_Robster]

Honestly, I've never heard of anyone having that many lymph nodes removed. I suspect that it is a transcription error. My own surical report referred to the "paddock flexure," which I eventually realized was the hepatic flexure, after spending much time fruitlessly studying anatomical illustrations!

Yeah I’m gonna go ahead and say that’s a typo too - you have about 800 lymph nodes in your body (mostly concentrated in neck, armpit, abdomen and groin) so this suggests they took >10% of your nodes from your peri-colon area alone. There’s about 100-150 in the mesentary around the colon, so this would mean taking most of them - and if nothing else I suspect you’d have severe lymphoedema from this. Figures around 8-15 nodes are more typical, with more extreme cases heading into the 20s. I believe taking >13 has been shown to be associated with improved average outcomes

[DarknessEmbraced]

I'm glad your chemo is going well but I'm sorry about the diarrhea. Maybe your doctor could prescribe something that would help or the BRAT(bananas, rice, applesauce, toast) diet would help. I hope you feel better soon.

[Skylogan10]

Hi all, thank you so much for all the replies. I haven’t been on here for a while as I was trying to clear my head and focus on my kids but I just got my blood work done Tuesday before my fourth and final round of CAPOX and see the my CEA level was up from 3.4 in November to 8.3 now. Of course this has me really worried again and unable to sleep.

To answer a few questions from the replies to my first post, I can see in my chart that they removed the terminal ileum (7cm), cecum and colon (39cm), mesentery (6cm), omentum (15cm), appendix (12cm) and pericokic adipose tissue (9cm width). The tumour itself was 10.2 x 5.5 x 2.5 cm.

As for the lymph nodes, I think I misread the chart the first time. I see now that they examined 86 lymph nodes but did not remove that many. It looks like 12 were removed but I don’t fully understand the chart. My lymph nodes were all clear and the margins were clear but it does indicate that the tumour invaded the visceral peritoneum.

The final diagnosis - Poorly differentiated adenocarcinoma, pT4aN0, resection margins free, Appendix and Ileum, within normal limits.

Unfortunately, I’ve continued to have severe diarrhea throughout treatment but I seem to be getting it under control now that they’ve given me Lomotil and I’ve really restricted my diet (bananas, oatmeal, meat and potatoes, plain pasta, white bread and rice, etc). This was done after I experienced severe rectal bleeding about two weeks ago. It was like a bad nose bleed…dripping into the toilet and the toilet paper showed several blood clots. Fortunately that was the last time I’ve had any bleeding.

Anyway, fast forward to Tuesday of this week and my doctor said my blood work looked good but the CEA figure wasn’t available when I saw her. I can now see that it’s up to 8.3 which is causing me to spiral. I know that many people have far worse numbers but the low CEA was giving me comfort…and now it seems like it’s possible my cancer is spreading despite treatment. I’ve read that some people have spikes during chemo and then the figure falls back…while other just continue experiencing rising numbers. I’m curious how you all view your CEA values, what important you place on them, and whether anyone has experienced increases that didn’t indicate disease progression? My next follow up is scheduled for a phone call on the 21st but I’m not sure I can wait that long.

To answer a few other questions, I am being treated in Toronto at Sunnybrook Hospital’s Odette Cancer Centre. I’m also seeing a naturopathic clinic called Insight Naturopathic with Doctor Mark Fontes. I’ve been doing a meyers drip before starting each round and was planning to keep this up more regularly following treatment.

The reason I didn’t have a colonoscopy before surgery was because I went to emerge with a blocked colon and had surgery the following day. I’m supposed to have a colonoscopy after treatment but my oncologist didn’t seem to think it was overly urgent so I think it’s being booked for April. But now that I’ve seen the CEA figure, I’m thinking I want to push for something sooner. I am thinking about calling the nursing team in the morning to ask about the blood results and see if I can speak with my doctor sooner.

I really appreciate any insight you may all have. I was getting really excited to put this behind me and just concentrating on recovery from chemo but the reality of my situation is kind of smacking me in the face again now. I fear for myself but mainly worry about my wife and young kids. Their names are Skylar and Logan, hence my user name.

Thanks and god bless,
Fraser

[roadrunner]

CEA was not a marker for me, so others will need to comment on the level/trend/chemo interaction, etc., but the increase and level at least suggest that a quick call to your doctor is in order to get their take on the 8.3. If there is concern, scans would seem to be a reasonable next step, so I’d ask about them. Not trying to say it’s going to go down that road—I heard lots of stories of CEA being elevated by benign conditions—but in your shoes I’d ask those questions now.

[Edited to add: Just went back and noticed you’re in Canada, so perhaps your ability to speed things up is limited.]

[Skylogan10]

I spoke with my oncologist and they’re going to go ahead and order more CT scans and blood work to explore why my CEA number has risen. They think it’s quite possible that it’s due to the severe diarrhea I’ve been experiencing throughout treatment but it’s enough of a concern to warrant further testing. Apparently, if the CT scans don’t show anything but the CEA level remains high, they will go ahead and order PET scans.

This is all worrisome to me but I’m happy to know that they’re going to go ahead with the additional testing…especially the PET scans because I know for some people in Canada, they’re not always quick to go down that route.

For now, I guess it means I’ll be riding the roller coaster of emotions for the next month or so but I’m gonna try to keep my mind from focusing on the worst case scenario as there appear to be other explanations for the spike.

As always, I really appreciate the responses. Wishing everyone a nice Sunday.

[roadrunner]

That sounds like an optimal result and approach. I understand the concern/related stress, but it’s better to know for sure.