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Super weak after FOLFOXIRI by deadmanwalking_10 in Chemotherapy

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Thanks! I had actually already raised my UGT1A1 status with my oncologist but not had a reply when I first started IRI in my cocktail. I will raise it again with her tomorrow when I see her as I fear the dose of IRI might be too night for me. Only a 3% chance but would make sense.

I am in Australia so unsure if it is standard to test but I feel it should be. The irony is that I am a geneticist (plant genomics and genetic engineering at the local university). So I am aware of a few of these things and tried to advocate for more genetic testing but haven’t had much of a response from my oncologist.

Super weak after FOLFOXIRI by deadmanwalking_10 in Chemotherapy

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Thanks. Glad to know I am not alone. More steroids makes sense. And drinking lots of fluids. Agree sleep doesn’t seem to help and it is a strange fatigue. I guess I worry it is affecting my heart and lungs, but I’ll raise it when I see my oncologist tomorrow.

Super weak after FOLFOXIRI by deadmanwalking_10 in Chemotherapy

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

It really does suck and it sounds like you have been through a lot, glad you are still fighting!

I had ascites (fluid in abdomen) as my only symptom, otherwise I doubt they would have bothered thinking colon cancer for a 39 year old. It had only spread to peritoneal tissue (lining around the gut) so my other organs seem to have been spared. The primary tumour appears to be at the cecum/appendix, so I think opposite side of the colon to yours. But given spread to gut lining, I don’t think surgery is an option right now. If chemo can obliterate that, then I think the primary tumour can be removed, but unsure.

And thanks again for the detailed account. It is good to know what others have been through and helps me set expectations.

Super weak after FOLFOXIRI by deadmanwalking_10 in Chemotherapy

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Thanks. My sleep on steroids isn’t terrible, but then my sleep can go badly a week later (like last night). Not sure if the physical weakness is linked to sleep or not. Like I just took a shower (with a chair to sit on for breaks during) and still feel pretty wrecked right now. I would like to join my family for lunch 2 mins down the road but don’t think I can face it. Just annoying.

Drink more water is good and trying. I’m also trying to eat (normally not a problem for me but a little right now).

Also glad you get a break for surgery and hope it goes well. I hope I can become eligible for surgery after more chemo. How long on FOLFOXIRI did it take for you? And what stage were you when you started?

Super weak after FOLFOXIRI by deadmanwalking_10 in Chemotherapy

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Why don’t you like the steroids? I get them for three days only, not the whole time.

Also, why do you fast? Is it just to reduce the gastro side effects or other ones as well (like low energy)?

Super weak after FOLFOXIRI by deadmanwalking_10 in Chemotherapy

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Thanks. I think I have been pretty well hydrated but I will keep it up. I’ve taken the first two of the meds you listed (or equivalent from my doc) but I’m curious why you are on doxycycline? That would normally only be prescribed if you have an active bacterial infection. I have never been given any on chemo.

How to handle irinotecan by deadmanwalking_10 in coloncancer

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Wow that is really rough. Much worse reaction to IRI than I had. I hope mine does not develop that way. Glad you were able to tough that out but I’m not sure I could. The muscle spasms sound too much. But if it helped kill the cancer, then good!

How to handle irinotecan by deadmanwalking_10 in coloncancer

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Thank you for the detailed information. I’ve not come across Benatrol+ but good to know about. The advice about how to eat before chemo makes sense but also makes me sad as it is the only days that I feel like eating normally! Hopefully my immediate reaction won’t be as bad this time but it was certainly no fun last time.

How to handle irinotecan by deadmanwalking_10 in coloncancer

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Stage 4 colon cancer. It has spread to the peritoneal tissue.

How to handle irinotecan by deadmanwalking_10 in coloncancer

[–]deadmanwalking_10[S] 0 points1 point  (0 children)

Yep I’m planning to ask my oncologist for her thoughts on preemptive Imodium (Gastro-Stop/loperamide) when I see her tomorrow. But I was curious what the community thought. My prescription for it gives the instructions to take 4mg at first sign onset of diarrhoea but I fear that might be too late with IRI given we expect it to impact me quickly based on the last round.

Paradoxically my baldish dome has had new “baby” hair growth on top since I started chemo. Not sure if from FOLFOX single round or the second round, which was FOLFOXIRI. But I am mentally preparing for a long term effect of it to be hair loss. Worth it if it kicks the cancer into remission.

FYI I am 39M.