The Colon Club

During chemo my CEA went up to 1.1 from less than .5. My oncologist told me it is normal to go up during chemo. But you are still in the low end of normal. The next reading I had was back down to .8.

Took my nap and it is still awful. This is going to be tough until it starts to subside. Going back to sleep some more with gloves.

Sorry about the bad side effects! I know you can make it through. Sometimes you just have to sleep to allow your body to rest and, honestly, to make the time go by faster.

I went to cry a few times over the pain. Unfortunately crying brings a lot of pain to my eyes. Sleep is a reprieve. So much for the gym tonight.

Let your doctor know that you are having the worst time with the oxaliplatin. Some people just cannot tolerate it a all. You may have to drop it.

Oh and the crying thing... Yeah, I learned that one early on also. Who woulda thunk that crying can be such a pain!!! (trying for a little humor)

Yeah, it’s one of the cruelties of Oxaliplatin.

Yes I remember the burning when tearing up. Do make sure if things don't get better you talk to your oncologist. Dosages can be reduced

Mike during my husbands FOLFOX he would sometimes use a heating pad on low setting if things got rough. He also rested with hands a little above his heart and he swore that worked. I know it’s miserable, but worth doing “just in case” and to keep any cancer at bay. I hope you start feeling better after sleep. That always helps. Can you do Uber or have someone drive you so you don’t have to clean the car?

Wow, I had no idea! So sorry to hear how you're struggling. I really had no sense of what havoc it can cause on the body besides neuropathy and mild cold sensitivity. That bitter cold in your area is an added burden too!

Praying you and others going through this get relief soon!

A bunch of food seems to have helped. Maybe I needed more calories to get my body warmer. I put off taking the Xeloda for a few hours as I was worried that it would make things worse but I eventually took it. I talked to the oncologist this morning before the Oxaliplatin and will push for a decrease in dosage for cycle 3 but I need some hard numbers as in how long this stuff lasts.

Some people don't like to talk about how tough it is and some talk about it but not in detail.

I didn't think that it would be this tough but was worried because so many indicated that it is.

I will try to adjust though. Hopefully tomorrow is a better day.

I feel a lot better this morning. The side effects are still there but they're decreased. The oncologist added magnesium to the IV and I had a sweet potato and potato yesterday which likely helped with added potassium. I also increased sodium intake. So I think that the neuro-side-effects greatly increase the body's need for electrolytes. I had tried one of the pedialyte-type supplements but the taste of those things is awful (too sweet for me) so I will try tablet forms of Magnesium and Potassium and increase sodium intake. I greatly increased sodium intake the previous time for the first week and then tapered off afterwards.

I had cramping yesterday but I didn't have the night cramps like I did the first cycle. Those are really painful.

I am going to the office today and want to get in five miles of walking. I will be puttnig my electric tea kettle to good use today.

So one really tough day and I'm looking to bounce back hard.

My potassium was always low as well. I know those pills are huge, but there is a powder you can drink but tastes awful. It's good to keep a journal of side effects as a lower dosage can be done. My xeloda was lowered 2-3 times due to diarrhea and I think the oxi was lowered once. Diarrhea was my biggest issue, but I think it was compounded because my ileo was reversed early. I don't know if you notice any difference in the output of your bag, but stay hydrated. I went in a couple times for hydration IVs as well.

susie0915 wrote:My potassium was always low as well. I know those pills are huge, but there is a powder you can drink but tastes awful. It's good to keep a journal of side effects as a lower dosage can be done. My xeloda was lowered 2-3 times due to diarrhea and I think the oxi was lowered once. Diarrhea was my biggest issue, but I think it was compounded because my ileo was reversed early. I don't know if you notice any difference in the output of your bag, but stay hydrated. I went in a couple times for hydration IVs as well.

My bag is more watery for the first week. Potatoes and sweet potatoes help quite a bit firming it up. The third week it's actually quite firm - maybe even a bit more than I want it to be. The potatoes work a lot better than the fiber supplements.

There are sports supplement pulls that taste okay but they're relatively pricey and don't have the potency of the stuff that you can get at Whole Foods (which can also be pricey).

NHMike wrote:

susie0915 wrote:My potassium was always low as well. I know those pills are huge, but there is a powder you can drink but tastes awful. It's good to keep a journal of side effects as a lower dosage can be done. My xeloda was lowered 2-3 times due to diarrhea and I think the oxi was lowered once. Diarrhea was my biggest issue, but I think it was compounded because my ileo was reversed early. I don't know if you notice any difference in the output of your bag, but stay hydrated. I went in a couple times for hydration IVs as well.

My bag is more watery for the first week. Potatoes and sweet potatoes help quite a bit firming it up. The third week it's actually quite firm - maybe even a bit more than I want it to be. The potatoes work a lot better than the fiber supplements.

There are sports supplement pulls that taste okay but they're relatively pricey and don't have the potency of the stuff that you can get at Whole Foods (which can also be pricey).

Yes I ate alot of potatoes and bananas. I still eat a banana every day now.

Either calories or electrolytes has something to do with the cold sensitivity. I was feeling it late this morning and went down to get some food and tossed a ton of salt in and that stopped the cold sensitivity. So not sure that it's the lytes or the calories but I guess I need to do some testing to find out which it is (or maybe it's both).