Brother diagnosed with stage 4 colon cancer

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.

Thank you so much for responding and for sharing your story. His journey starts Tuesday and I am of course hoping for the most minimal of side effects. He has a village and we will all be there for whatever he needs. I am even postponing improvements I have wanted to do on my house to pay his rent for at least a few months, maybe more if possible. Thank you for clarifying it is cm. I hope you have a wonderful day.

Been thinking about a response here.

First, I'm sorry for your brother's situation.

As a colon cancer survivor (stage 3C), I'll share my experience in how to help. Let me say up front, this is probably not at all what you expected.

1) As a sister, you probably will not have full knowledge of the situation due to data privacy laws/policies unless your brother/spouse has explicitly allowed or shared it.

2) Second, often well-intended people offer advice, much of which is bad and much of which doesn't apply. A patient gets lots of solid advice from their medical team and can easily get overloaded from that side. Patients need concern and caring from friends/family, but keep the unsolicited advice minimal.

3) Practical helping of both patient and spouse is recommended. It's very hard on both and it's not a short duration event - it's a series of events more like a marathon which is taken one day at a time. Once on chemo, it's a very up and down situation as the week one gets chemo they go downhill fast, then recover the second week, then do it again - usually 12 cycles.

-- Providing meals is helpful. Offer this, but also let them decide when.

-- Ask how you can help. What they need will change with time, so you may need to periodically do this.

-- Driving to the infusion center is helpful as the patient often can't drive themselves. My trip was 40 miles one way. Often the patient goes home with an infusion pump, runs it for 44-46 hours, then has to return it. Lots of driving.

-- Having a trusted companion (usually the spouse, but not always) along to appointments and doctor visits are helpful - the patient can easily suffer information overload so another observant adult along taking notes is helpful.

-- Be encouraging. It helps the patient to be insistent to continue the treatment, while being patient with themselves when they are weak. It is easy to quit treatment prematurely, difficult to stay with it. While chemotherapy can beat the heck out of someone, it's important to stick with it unless there are serious medical conditions which call for stoppage. But, remember it's also the patient's call to make.

-- Helping the patient get out of the house when up to it - even if only a few minutes or an hour. I had chemo during COVID and a simple, short car ride was wonderful.

-- Chemo messes up the nervous system - throat and mouth are extremely temperature sensitive and throat can spasm, as can extremities like fingers, so when taking them out someplace for a break, consider that. Hearing and balance can be effected as well.

-- Don't be surprised if there are breaks in the chemo plan for rest/exams or adjustments to the plan as in what chemicals are used.

-- Short visits are better than long ones - often words aren't necessary, just being there is enough.

-- Chemotherapy weakens the immune system - therefore if you have a cold, flu, illness, etc. it's a good idea to not visit in person.

I hope that's enough to get you started.

I feel and pray for your brother and you. ❤️. I have been dealing with stage 3c and am getting my first CT scan after chemo in May. Support from family is so so so important. The hardest part for myself was not the chemo, but the feeling of being alone in this even though I had an army behind me. Crying in the middle of the night and praying to see my boy graduate and get to college… still my goal! But my sister went to every appointment with me and chemo treatment and we had a visiting nurse come to my sisters to remove the chemo from my port. I sure hope he is getting one if not already has one. It was a vein saver! I actually kept mine in after last treatment so when we do blood draws it’s easier on me. I have bad veins and am petrified of needles and knowing I didn’t have to get stuck amillion times and wouldn’t feel it made a big difference. I could not handle the one part of chemo called Oxaliplatin because I had an allergic reaction to it and to stay on it would have resulted in anaphylaxis. So I only made that 2 rounds. It’s not the norm. The steroids they put me on gave me a boost of energy while attached to chemo but energy dropped drastically once unhooked. Don’t perseverate on time… instead focus on making good memories and staying positive. Invest in good lotion and stay hydrated! That was a struggle. I still haven’t bounced back in that dept. Cards coming weekly from my church and family kept me going too. You never know how much it means till you get it. God bless you. It will feel like forever and go fast at the same time. I pray for good results. Let him feel his feelings. All of them are valid. I had days I wanted to hide but I did not let my self fall into that pit. Be brave and strong and understanding . ❤️

This was very helpful and I appreciate all the thought and effort put into it. Fortunately the hospital where he will be getting his chemo is just a 7 minute drive so that is a plus. He has a lovely wife, Erin, and you have reminded me that she needs to know there are people in her corner to help and to talk to also. She has two daughters that she is very close to and who love my brother like a father. One also lives right across the street. Erin's mother currently lives with them and she has stage 4 COPD so yes, she also needs support. She does have a part time job so after reading this I need to ask her if she is able to go to all the doctor appointments. I can certainly make arrangements for someone to stay with her mom if that is an issue. I so pray the chemo is kind to him. My sister (half sister) just went through rectal cancer, stage 2. She is clear now but the chemo and radiation did a number on her body. It has been over a year since her chemo and radiation but her body is still not back to normal. Thank you again for your kindness in responding.

Thanks for your kind words.

More things to add, not for your benefit because you already know from your half-sister's experience, but for others who may be reading along.

While one may be done with chemo, it's not done with you when you finish it - takes a long time to recover from the damage that chemo can cause. I'm 28 months post-chemo and still have some mild/minor nerve damage symptoms.

There also is the ongoing surveillance blood work and scans - first at 90 day intervals and eventually extending them out. It's a wonderful advantage to be so close to the facility that does this.

My my best to you and yours - especially Erin and her husband/your brother.

So my brother had his first round of chemo, one day at the center and then two days with the pump. He got the pump off today. I called to see how he was doing. He said good other than his stomach was “jacked” up. Said bloating and gas and when gas expels there is no relief as it seems to fill right back up. And, he said he had a combination of diarrhea and constipation if that made sense he said. I told him I had read somewhere about maalox but he said they gave him a prescription to help. Hoping he gets relief soon.

Oh, also dealing with insomnia.

Myjiggers, thank you for this insight and I hope you are doing well.

This is an update from Steele...My brother finished his second round of chemo. It was still hard on his gut but this time he anticipated it and pre-medicated so it was a little better and didn't last as long. I spoke with him last night and this is what he told me....sis, my poops look like they are back to normal. No longer spaghetti thin. He is hoping that means the tumor in his colon is shrinking and making room. Would anyone concur with that? He will be getting another CT scan done after his 3rd treatment so should be in the next few weeks. In addition, has anyone received the Myers' Cocktail? I was thinking of getting this for my brother on the day his portable chemo pump is removed to quickly rehydrate him?