The Colon Club

Hold the yogurt/kefir in your mouth, it is strangely soothing. Also avoid all foods with Folic Acid added to decrease exposure to chemo in your nerves. This is repeated all over this site and it was suggested to me by both the chemo nurse and the pharmacist from my insurance company. I notice that even a month out I am clumsy. I also found that when I bruised or cut myself it took longer to heal, left a scar. Take extra care of hands and feets, they take a beating with this stuff.

Take care,
Susan

Yep, I am very careful about folic acid, we check labels on everything at the grocery store and I check ingredients online whenever possible on the delivery/take-out food we occasionally order, too. We're using a lot more organic products at home which is probably just as well. I also haven't touched any alcohol since surgery to try to protect my liver.

Had my 5th infusion yesterday (disconnect tomorrow). So far so good on this one, although it's only day 2. I'm noticing my hand shaking a bit when I pick up a glass of water but I think that is associated with the twitchy muscles I get the first few days. Not having any tingling or loss of sensation in hands or feet yet, fortunately, aside from the stuff associated with cold sensitivity.

I've also been having a very slow nosebleed for the past couple of weeks (no dripping blood, I just see it when I blow my nose), but that is typical of me when in heavily air conditioned environments in the summer, and in the depths of winter. I just hope Autumn starts peeking its head around the corner to give my nose a break.

My liver enzymes were elevated yesterday -- about twice the normal max -- and platelets were a bit below the normal low, but none of it was bad enough to delay chemo. My white blood cell counts are great thanks to the neulasta. Everything else was very close to normal range. I hope the liver enzymes get closer to normal; I saw others have posted that those numbers can jump around a lot while on chemo. The nurses didn't really have any advice to offer me and this was an off week for me to meet with my oncologist. If my liver enzymes are still out of whack in 2 weeks I'll ask for more information about what that means.

Will update with any other side effects that crop up.

Please explain the folic acid thing? This is new to me and I am on Round 8 (final round) next Monday.

Folic acid is thought to exacerbate neuropathy if taken while receiving folfox. It is an additive in many foods and can be hard to avoid.

My oncologist was aware that I was taking both an iron supplement and multi vitamins during chemo but didn't have any concerns. My neuropathy didn't show up until after infusion #10. Is it worse because the multi vitamins i took have folic acid in them? I don't know. I am just hoping it will be get better with time.

Webmd.com has a drug interactoion page where you can get details of interactions between drugs, supplements, and OTC meds. There may be other sites too, I searched the forum quickly but couldn't find any here, maybe you will have better luck with a search.

mob

Just shy of a week after Infusion #5, now. Symptoms were about like usual; cold sensitivity, lack of appetite, first bite; none of it worse than usual (except maybe the lack of appetite, but not by much). I can drink fridge-cold things now, but handling them is still painful and I still need another couple days at least before I will be able to comfortably eat ice cream. My tongue has felt dry even when I am sure it isn't, but I haven't had any more mouth sores yet. I am definitely getting out of breath more easily; walking up 2 flights of stairs to my office gets my heart racing now, and that has never been normal for me.

Had more problems with my bowel movements this time around; they were hard but smallish and frequent, so I thought I should just leave things alone since it didn't really seem like constipation. After a few days of that, I started having pretty awful pain during and after defecating. I was careful to eat lots of fiber and also took a couple of stool softeners yesterday, but it took a while for those to help much. Today it's finally slowed down; I still had a few bowel movements in the morning, those were painful too, but no more yet since then. I hope things are about to even out for me. I hate to complain about this when I know those dealing with rectal cancer deal with so much worse. But hopefully it will help put things in perspective for those with similar conditions to mine.

I think in the future I'll definitely not wait for days before taking a stool softener, and will bump up the fiber in my diet quicker. The pain had me tempted to cut back on food, and it's hard enough to eat with my lack of appetite the first week after an infusion. I don't need to give myself more reasons to hold off on food. I calculated my BMI as 18.51 yesterday. I really don't want to lose any more weight.

I am currently working but I'm typically taking off Fridays for Infusion, and Mondays and Tuesdays off as the two days after disconnect. I go in late a lot because it's hard for me to get going in the morning. My office is also too cold for me the first few days after infusion unless I bundle up in socks and warm clothes. That should get better when it finally cools off; my office tends to be warm in the winter, at least. Haven't decided yet if I'll take off the last 2-3 months. I work at a college and I am sure germs are everywhere. Also I have a coworker whose husband is dealing with at least 2 different kinds of cancer, and the last thing I want to do is risk passing things around the office. I am glad I am on Neulasta at least.

Wanted to add one more thing. I think the thing that has been most frustrating to me aside from the whole "I have cancer?" thing is that the mother of one of my direct reports passed away while I was recovering from surgery and still had an open wound, so I really didn't feel like I could attend the service. Then a couple of weeks ago a previous direct report of mine who had retired passed away and the service was the same day as my chemo last week. I decided to stick to my chemo schedule and not attend, because I really don't want to shake things up any more than is absolutely necessary, but I feel bad to have missed the opportunity to attend and be supportive of colleagues I care about. Fortunately everyone has been super understanding, but man. 2018 needs to give me and my office a break.

My husband has an ostomy and his dr told him to take a stool softener 2 times a day. They were still way to hard. He took more and then things got way to soft. When I went to sams club to get more I talked to the pharmacist because of the limit on the bottle. He told me he was fine taking up to 6 a day. But to NEVER increase/decrease by more than 1 a day. It can take up to 36 hours for any stool softener changes to be noticed. Wait to make anymore adjustments. He said otherwise your gonna constantly be chasing the extreme changes. We have found he takes 2 in the am and 2 with supper. That has been keeping him pretty regular. We also found to only adjust 1 up/down for one day and go back to his schedule or it makes it worse the opposite direction.

I suffer with the constipation too (reminder - chemo is first for me) from the 5FU. This last round, they dropped the 65% Oxaly (due to my neuropathy) so I felt ok day 1 and early day 2 (until the pump 5FU kicked in) and I actually had an appetite and ate well. I learned a lesson - the more you eat, the more you need to go, and each BM is painful due to the hard BMs. (Plus, I'm on a regimen starting 2 days before infusion - with Colace and Senna - so the Senna makes me have to go. Maybe I need to pump up the Colace. Thanks for the tips on that, tminor5.)

So, next round, my final round, I will cut back on eating on infusion day and the following day to avoid too many BMs (and the pain that comes with them). (I also had that nightmare round 4 with extreme constipation (nearly went to the ER), which gave me terrible hemorrhoids, which plays into the pain, I THINK. I wonder how the hemorrhoids will affect me during radiation - when I ASSume pooping will hurt for all kinds of reasons.) My weight is not an issue anymore (it was in earlier rounds when I was on 100% Oxaly) so I don't have to worry like you do, Jannine.

I had extreme constipation from the chemo. I tried the Senna and Colace, but it did nothing. Only thing that helped me at all was Miralax. I believe I started taking it the day before infusion and for a couple days after.

hiker

My understanding has been that the constipation is from the anti-nausea meds given as pre-meds. It happened to me the first cycle, but not since then.

I have virtually constant diarrhea/loose stools instead. That may be partially because of Metformin. Having had a right hemicolectomy does mean that the reduction of liquid in the stool is significantly lessened.

I've now gotten through dose #7, so more than halfway done! My side effects haven't changed much EXCEPT that I finally did start getting fatigue after this round. My disconnect day is Sunday and I felt super tired starting in the afternoons Monday and Tuesday (last week). I took 1.5 to 2-hour naps in the late afternoon those days, which I never do, and then I went to bed early and slept for another 10 hours or so (also uncharacteristically long for me). Wednesday I went to work late (headache from the Neulasta shot I give myself Tuesdays) and had no trouble with fatigue; in fact I had a faculty meeting that afternoon and spent 2 hours after I went to bed arguing with someone in my head, only got about 5 hours of sleep, but still felt fine the next morning rather than exhausted.

I am successfully managing my harder, more uncomfortable stools during and right after chemo with Colace by starting to use it sooner. I'm only using 1-2 of them per day, but I think they are helping. I also have a bidet seat on the toilet now, which helps make the cleanup less irritating.

No neuropathy yet, thank goodness. My appetite is still lousy until about Wednesday, but that's been the case all along. Mostly because I get icky drainage that tastes weird in the back of my throat during and right after Chemo. I can manage to drink water just fine but it's hard for me to eat a full meal. Snacking a lot (which I normally don't do; I'm having to train myself) on the low-appetite days does seem to help me eat more over the course of the day.

Also my husband (who does all of the cooking but doesn't make desserts) found unenriched all purpose flour and pastry flour at the grocery store, so I baked a chocolate orange cake from scratch over the weekend and took that over to friends when we got together to play board games. The cake was a hit and now I can eat what's left without worrying about any added folic acid. The cake doesn't have any frosting or icing so it's not a huge amount of sugar, either.

So overall I'm still handling the chemo pretty well. No hair loss still. 7 down, 5 more to go!

Great to hear about the progress and your ability to manage the harder stuff.

Thanks, Mike. I hope your situation is continuing to improve. It sounds like you've been seeing more steps forward than back, lately, which is great to hear. I've been concerned for you.

Good for you. You seem to be making things work, adapting as needed.
Susan