The Colon Club

Yes - she actually said she's never seen - I am going to try to copy some of the remarks here and take into the nurse and onco. Made me feel ... weird about reporting. I don't really know where to strike a balance between reporting side effects and being a complainer ...

To not sound like I'm complaining (I hope!) I just matter of factly say I'm feeling the first bite thing. She's actually asked what that is and I told her. I also told her about this forum and I've learned what to watch for and how to manage these effects. It helps knowing that this is 'normal'.

I honestly believe that we need to be reporting to our doctors every side effect we experience. Whether they believe us or not. Maybe the next patient they have tell them of the same side effect, they may actually listen.

I was only on Oxi for one infusion...first bite hit after 1 hour and lasted for four days!

Well it sounds like our experiences were very similar. I am grateful that I read others experiences or it would have been quite frightening


Today the rocks are lingering in my throat, it is windy.

I think it is all just crap! My husband made a huge dish of garlic mashed potatoes last night, easy to eat and a comfort.

S

O Stoma Mia wrote:

retiredteacher wrote:... we are on untreated well water. Good quality, but too many unknowns in the piping system etc...

I have a special interest in groundwater contamination because most of the persons I know who had gastrointestinal cancers lived outside metropolitan water districts and had their own private, domestic wells.

Have you had your well water tested for contamination?

https://water.usgs.gov/nawqa/studies/domestic_wells/nitrate.html

We live in the country with our own well. It had always tested ok for bacteria and nitrates, but hasn't been tested for many years and who knows about other chemicals or pesticides. After reading this and for peace of mind, we just bought a water filter that will sit on our counter. My daughter has one for her city water and loves it.
https://www.berkeyfilters.com

Folic acid/folate:

Had a terrible time with nausea Monday and decided to research folic acid .... https://www.globalhealingcenter.com/nat ... cid-foods/ --- it's in everything (!) if you have a good healthy diet. So it's not enough apparently to eliminate fortified breads, cereals - it might be wise to look at the whole diet. I realized my organic "folic acid free" bread contains flax - a high source of folic acid. I have been eating oranges and pineapple like they're going out of style - other great sources of folic acid. More to learn - but looks like dairy may be a safe bet. Anyway - Tuesday was a much better day, but all I ate was cheese and yogurt. It's a work in progress!

Flour - Could not find a flour without folic acid in stores - Red Mill has it, the stuff at the organic health food store has it. I don't know about the King Arthur. Then, in my own pantry I found a bag of Trader Joe's White whole wheat flour (sounds like a typo, but that's what it is) and voila! No folic acid! Not sure how old the stuff is, but if it's any good will use for pizza crust today .....

retiredteacher wrote:Folic acid/folate:

Had a terrible time with nausea Monday and decided to research folic acid .... https://www.globalhealingcenter.com/nat ... cid-foods/ --- it's in everything (!) if you have a good healthy diet. So it's not enough apparently to eliminate fortified breads, cereals - it might be wise to look at the whole diet. I realized my organic "folic acid free" bread contains flax - a high source of folic acid. I have been eating oranges and pineapple like they're going out of style - other great sources of folic acid. More to learn - but looks like dairy may be a safe bet. Anyway - Tuesday was a much better day, but all I ate was cheese and yogurt. It's a work in progress!

I buy Bob's Red Mill Organic, no folic acid. Pineapple is hard on stoma , too much chewing so I skip it.

My nausea is gone, able to eat cool foods like yogurt with fresh strawberries, red wine. I still have finger pain from touching the metal ring on jelly jars, orange juice bottle, even carrying a carton of milk back to classroom today.

I haven't been worried about natural sources of folic acid, I believe your body digests it differently then the additives. But I will email pharmacist who shared info and chemo education nurse to see for sure.

Susan

Unreal diarrhea began on day 14 of cycle 2; Lomotil did not help; finally mixed Lomotil with Norco for a five hour relief. Oncologist is pushing back cycle 3 one week - to begin May 10 rather than May 3, and will reduce the Xeloda back down to 2000 mg from 2500. This was a big issue toward the end of neoadjuvant. Still fighting it today - fingers crossed.

retiredteacher wrote:Unreal diarrhea began on day 14 of cycle 2; Lomotil did not help; finally mixed Lomotil with Norco for a five hour relief. Oncologist is pushing back cycle 3 one week - to begin May 10 rather than May 3, and will reduce the Xeloda back down to 2000 mg from 2500. This was a big issue toward the end of neoadjuvant. Still fighting it today - fingers crossed.

I have low RBC and WBC and a lot of fatigue so we pushed back a week as well. My oncologist prefers a one-week break to skipping cycles.

retiredteacher wrote:Unreal diarrhea began on day 14 of cycle 2...

If you are having uncontrolled diarrhea, then you need to watch your fluid intake very closely. Diarrhea will cause a loss of electrolytes, and if these are not replaced in a timely fashion then there will be problems with kidney function that may lead first to failed renal function tests in your blood work, and then later maybe to kidney stones or bladder stones, or even in severe cases, to renal failure.

You need to replace the lost fluids with electrolyte-balanced fluids, e.g., sports drinks like Gatorade,100-Plus, etc, or lots of water containing oral rehydration salts, or equivalent.

If you don't replace the lost fluids with electrolye-containing fluids, then your renal function tests will eventually go out of range and you will have to skip chemo cycles until these tests come back into range.

Just drinking water is not enough.The water needs to contain sufficient electrolytes to replace what was lost due to diarrhea.

O Stoma Mia wrote:

retiredteacher wrote:Unreal diarrhea began on day 14 of cycle 2...

If you are having uncontrolled diarrhea, then you need to watch your fluid intake very closely. Diarrhea will cause a loss of electrolytes, and if these are not replaced in a timely fashion then there will be problems with kidney function that may lead first to failed renal function tests in your blood work, and then later maybe to kidney stones or bladder stones, or even in severe cases, to renal failure.

You need to replace the lost fluids with electrolyte-balanced fluids, e.g., sports drinks like Gatorade,100-Plus, etc, or lots of water containing oral rehydration salts, or equivalent.

If you don't replace the lost fluids with electrolye-containing fluids, then your renal function tests will eventually go out of range and you will have to skip chemo cycles until these tests come back into range.

Just drinking water is not enough.The water needs to contain sufficient electrolytes to replace what was lost due to diarrhea.

Very important point. I find that electrolyte gives me cramps and that's a definite warning sign too of insufficient electrolytes.

Thanks - I have been including SOME Gatorade - will go back to inclusion of Pedialyte and up quantities1
Terri

Terri
I am sorry to hear that you've developed this complication. The heat has presented a challenge for me, how about you? The a/c makes my throat get funny and I can't seem to find a temperature that's comfortable. I also noticed a tan line on my foot after just a few hours outside on Sunday, will have to lather on sunscreen.
I just found an iron supplement that is veggie based and without folic acid. I have been anemic since this started last summer. So maybe the iron is hold the diarrhea at bay. I am going in tomorrow for round three, wish me luck!
Susan

Terri,
How are you doing? Hope symptoms, side effects are gone. When, do you start back? It is sure heating up quickly which presents new challenges.
Susan