Brother diagnosed with stage 4 colon cancer

I was diagnosed with stage 4 colo-rectal cancer in 2021. Spread to my liver, I have nodules on my lungs but they didn't grow or change until recently. It's a HARD battle! Hopefully, he isn't underweight going into chemo. I was already severely malnourished, so that was hard. But... what helped me with all the chemo meds (the take-home pump especially) and insomnia is medic. marijuana. It helped with everything. I've had (I think) 14 rounds of chemo, 4 rounds of proton radiation (SOOOO COOL), and 3 major surgeries and about 7 small ones and ablations. I honestly feel pretty good most days, considering... Good luck to your brother and you stay strong too! I've watched people I love burn out trying to keep up and handle it all.

Hi again Roy, I thought I successfully posted a reply to this yesterday but I don’t see it. I printed this out the first time I saw it and plan to give it to my brother to give to his oncologist. He is being treated at Advent Hospital cancer center here in Orlando. His oncologist has been written up in Orlando’s Best Doctors magazine so hoping she is aware of these tests. Thanks again for the response.

Hi Cheyna23, one of the first things my brother did after his diagnosis was get his medical marijuana card. He does do the gummies and they definitely help. You stay strong 💪 too. You are an inspiration.

My brother has not done radiation, and I don’t think surgery is in the picture.

you may want to share the following research paper title with your oncologist and discuss the findings Journal of Clinical Cancer Research Clin Cancer Res "Minimal Residual Disease Detection Using Plasma Only Circulating Tumor DNA Assay in Patients with Colorectal Cancer"
https://doi.org/10.1158/1078-0432.CCR-21-0410

Steele, (me) is feeling heavy hearted today although my brother is still doing ok. The side effects are really intensifying. He seemed so down when I talked to him last night - plagued with nausea and diarrhea. He has just finished his 6th round of chemo - scheduled for his first CT scan on the 12th, which is a Friday, with results scheduled for Monday the 15th. I did not know until talking to him last night that his tongue has been numb going on 3 weeks and he has not been able to taste any food. In addition, the cramping is more severe as is the constipation. Every week, the symptoms show up at different times. His 6th round was so good and he was happy until the symptoms hit around the 4th day off, first time they have come so late in the process. I think I read on here from a kindred soul that very few people make the whole recommended protocol without needing a break. I think he is getting there. I will post his results when we get them on Monday. In the meantime, keep those prayers from all you Warriors coming!

@steele

So sorry to hear about your brother’s side effects with his chemo treatments. I had fortnightly infusions of Folfiri + Avastin for stage 4 appendix cancer (with the 46 hour take home pump). Insomnia was initially a side effect of the anti nausea medication but my body soon got used to it so insomnia wasn’t a problem. The steroids got on top of nausea. My main side effect (apart from fatigue) was diarrhea. Your brother should ask his Doctor for recommendations for medication to stop it. I got on top of mine quickly. Side effects will keep popping up (eg sores in my mouth, bloody scabs in my nose, purple brittle nails etc) and he’ll be able to manage them as they pop up. Eating is a hassle. I couldn’t eat anything but bananas and grapes when I was on the bottle but as soon as it came off I ate what I could and as healthily as I could including salmon, chicken, vegetables, yoghurt etc.

The main thing is to hydrate hydrate hydrate however he likes to do it. Walking is so important too physically and mentally.

I was lucky and neuropathy was not a side effect. It is something you should check with your brother’s team whether he’s likely to get it so he can be prepared mentally for it.

Wishing you all the very best. I’ve been NED (no evidence of disease) coming up for 2 years after 12 months of major surgeries and chemo + immunotherapy. It’s worth the fight 🤺🏋🏻‍♀️🙏

I’m not sure if I’m allowed to say so but I wonder if joining the free Belong cancer app might be helpful to your brother 🤔 I also belong to that community and it’s a great way for cancer patients to vent and lean on each other as fellow cancer warriors.

Everyone reacts to chemotherapy differently. There is no one-size-fits-all when I was diagnosed with stage four I did eight rounds of chemo since then I have done another 10 rounds. I am fortunate that the side effects are small. I mostly had side effects from the drugs that they included with the chemo when I was having infusions every two weeks. Now that I am taking oral xeloda I have virtually no side effects. Will put salt and pepper on them. Sometimes a break for a month is beneficial. Everything works but nothing works all the time.

Thank you Isadora 2021 for you insightful recommendations. My brother has been given medication for the diarrhea but he doesn't like to take it because it clogs him up worse. He finally gets relief and feels back to normal once he has several "blowouts" to be perfectly descriptive. But, the constipation and cramping before he gets to that point is the most painful. I too was hoping he would not get the neuropathy. My older 1/2 sister recently went through treatment for rectal cancer and she had to stop the chemo because the neuropathy in her feet was unbearable and unfortunately, 2 years later she still has it, although not as bad. I do worry that he isn't eating enough as yesterday and the day before he couldn't hold anything down. I keep trying to talk him into letting me get the traveling IV Med people to come and give him an IV of electrolytes on these bad days but he said his oncologist told him not to waste his money as he could drive to the center and get one. Maybe what she wasn't considering was that he wouldn't feel well enough to drive there, even though it is a short drive. I am going to keep on him to do that. He has a lovely wife so I have to be careful and not become too intrusive but I really believe it would help him. And, I love that you mentioned Belong. I am on there - I am Rita@1255. I just love Werner 14! The people on there are just amazing. I take screenshots of positive remedies and things they say and send to him - especially the funny sayings as laughter is also a great medicine. So happy to see the letters NED - thank you for this support.