Brother diagnosed with stage 4 colon cancer

Posted by steele @steele, Apr 19 3:53pm

My brother was recently diagnosed with stage 4 colon cancer. The cancer has spread to his lungs. He has 4 nodules located in the lower part of his lung with two measuring .8 one measuring 1.0 and the last one measuring 1.3. I do not know if this is mm or cm? I am just wanting to take part in this support group discussion hoping to find people who have had similar diagnoses and have come out the other side. We are a very close family and are really struggling with this news. He starts chemo this coming Tuesday. His doctor has him doing chemo in house so to speak one day and then wearing a machine for 46 hours while home, returning back to hospital for it to be removed and then getting a shot, I think to build up red blood cells. He will do chemo with this regiment every other week. This is all I know.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

Sounds like h s on his way to improvement! Suggest you ask your oncologist for a CTDNA test, or even better the new improved Signatera Tumor Informed CTDNA test. These tests performed 30 days after surgery and then four to six weeks following completion of chemo are very predictive, and helpful to guide treatment and the overall care plan. In my experience daily exercise even though it was difficult at times and eating very well eg Mayo keto diet, and protein drinks were important

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@roywalton

Sounds like h s on his way to improvement! Suggest you ask your oncologist for a CTDNA test, or even better the new improved Signatera Tumor Informed CTDNA test. These tests performed 30 days after surgery and then four to six weeks following completion of chemo are very predictive, and helpful to guide treatment and the overall care plan. In my experience daily exercise even though it was difficult at times and eating very well eg Mayo keto diet, and protein drinks were important

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Thank you so much for taking the time to respond to my post. My brother's job is in land clearing and prior to this diagnosis he was pretty used to having to periodically dig trenches using a shovel and doing other types of "hard labor" so he is pretty fit. In addition we live in Florida so it is pretty hot too. My other brother owns the company which is such good fortune so my brother is under strict orders to NOT do any manual work during this time. Also, my brother chose not to do surgery yet as the tumor is near areas (I don't know the particulars of that) that could possibly have him needing a bag so his oncologist, and his gastro doctor agreed to do chemo first to see if they could shrink the tissue. He does not have much of an appetite in general anymore but he does force himself to eat the diet his oncologist recommended and when he can't eat he does protein shakes. I printed out your recommendations and will give them to him to ask his oncologist. Again, thank you very much.

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You're welcome! And I would add that even though I did not feel great at times including peripheral neuropathy cold sensitivity and ataxia (I live in Minnesota) I forced myself to go out in the woods grouse hunting with my dogs, with a much greater appreciation of the world and life. I think that helped me a lot.

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@roywalton

You're welcome! And I would add that even though I did not feel great at times including peripheral neuropathy cold sensitivity and ataxia (I live in Minnesota) I forced myself to go out in the woods grouse hunting with my dogs, with a much greater appreciation of the world and life. I think that helped me a lot.

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I couldn't agree more. Keep as active as possible both before and after surgery / chemo. And pile in the protein - Greek yoghurt contains lots and is easy to digest.

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@steele

Oh, also dealing with insomnia.

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When I was undergoing chemo, they'd given me 10 ml of steroid, which destroyed my sleep the night after. Supposedly to help with nausea. I politely asked the oncology to tone it down to 5 ml and maybe eliminate it entirely since my nausea was tolerable and loss of sleep was worse.

As usual, your experience may vary.

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@roywalton

You're welcome! And I would add that even though I did not feel great at times including peripheral neuropathy cold sensitivity and ataxia (I live in Minnesota) I forced myself to go out in the woods grouse hunting with my dogs, with a much greater appreciation of the world and life. I think that helped me a lot.

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Can ditto the comments about peripheral neuropathy cold sensitivity and ataxia. Chemo can adversely impact anything and everything reliant on the nervous system - besides the cold sensitivity, I had balance issues.

I was in a yo-yo mode - cycles of down then back up. Get the chemo, go downhill for 4-5 days, then gradually bounce back, but not quite to 100% - maybe 95%. I had to halt my chemo several times due to side-effects/fatigue and medical checks. That is also normal. I was told nobody gets through the 12 - 2 week cycles without a delay.

I called it patient insistence. One had to insist on pushing through it, yet be patient with your limitations.

Hope this helps.

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Absolutely stay as active as you can. I did not (it is tough to get motivated when you feel like crap, plus it was winter - I was very cold sensitive and it was covid so no mall walking or anything like that) - I regretted it ! It was very difficult to regain abilities afterwards.

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Well, after 3rd round of chemo, my brother said this one hit hard. Up and down all night with stomach cramps, gas, on toilet most of the night and this time throwing up from nausea😢. If I understand the process, each time may or does get worse side effects. He is scheduled for 12 total. I know I have read somewhere on here that often times patients need a break before finishing their scheduled infusions. Anyone have suggestions for comfort? He got the pump off yesterday, is scheduled for his first CT scan a week from today on May 31st. The last two rounds showed by day two after pump removed, felt significantly better.

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@steele

Well, after 3rd round of chemo, my brother said this one hit hard. Up and down all night with stomach cramps, gas, on toilet most of the night and this time throwing up from nausea😢. If I understand the process, each time may or does get worse side effects. He is scheduled for 12 total. I know I have read somewhere on here that often times patients need a break before finishing their scheduled infusions. Anyone have suggestions for comfort? He got the pump off yesterday, is scheduled for his first CT scan a week from today on May 31st. The last two rounds showed by day two after pump removed, felt significantly better.

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When I did chemo (FOLFOX6), the side effects of the oxaliplatin grew intolerable - caused some vertigo/dizziness/falling and cardiac issues. So I got a break to have the cardiac/vertigo issues checked out and afterwards they dropped the oxaliplatin and I finished the 12 cycles with 5-FU only.

They can adjust the chemo regimen and allow a short rest as needed.

My regiment had 10ml of a steroid at the beginning of the infusion - that can cause insomnia in some and I had them drop that to 5ml. The purpose is to help ease nausea so that may not be an option. for him.

As for the cramping/gas issues - I had some anti nausea meds given, but never got severe enough nausea to take them more than a few times - the lack of nausea might be related to dropping the oxaliplatin.

I think it's important to make sure his care team knows of his difficulties/symptoms in detail so they can make adjustments.

Hope that helps.

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@amyb5

I’m sorry for your brother’s diagnosis. It’s devastating to have a family member get this news. The nodules would be read in cm.
I am in my third year post stage IV anal/rectal cancer. I’ve been treated with chemo & radiation twice. He will feel miserable, but with a lot of support get through it. Wishing you & your family all the best.

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Hi amyb5, I am the other sister, my brother has done 3 rounds of chemo so far and now the side affects are starting to show up. Throwing up, diarrhea and not getting much sleep. As we were all hoping for no side affects it is really kicking him

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