The Colon Club

Susan - what is your Xeloda dose right now?

rp1954 wrote:If you are going to the European dose of Xeloda, be sure to ruthlessly weed out folic acid in your diet (regular bread, fortified grains, etc) and old style multivitamins. European Xeloda patients didn't have folic acid fortified foods. The extra toxicity is to you, rather than a cancer benefit. Folinic acid (leucovorin) or natural folates are useful. About 50% of patients have a lot worse toxicity due to folic acid combined with 5FU drugs. This is discussed more in the archives.

We actually built up a B multivitamin formula without any folic acid and added liver or liver spread for the natural folate and vitamins content for long term oral 5FU treatment. Liver helped "our" blood work a lot.

Thank you that si exactly what I have done. Bummed that the iron supplement I was using,Floradix, has folate in it. I am anemic and haven't been able to get over the line yet. I found Alpine Valley Organic bread at local grocery and Costco. I got European brand pastas and Bobs Red Mill Organic flour.
What multi vitamin did you find? Any suggestions for iron supplement?
Susan

retiredteacher wrote:Susan - what is your Xeloda dose right now?

1500 twice a day. He is going to add another 300 mg twice a day. Two weeks on, one week off, timed with infusion.

Yesterday did yoga, gardening and walked up the hill. Today worked for 5 hours, shopped and gardened. Scary to feel normalish.

Making soup and had to put on oven mitten to hold the celery and carrots for cutting as they came straight from refrigerator.

What's your dose?

S

Susan - lower dose 1000 x twice daily = 2000. (Kidney shutdown/profound diarrhea in Nov with the radiation.) Oncologist thinks I may not be able to tolerate the Capecetibine, but I think it was the addition of radiologists's rx of X milligrams of Advil with the Norco for radiation butt pain; not under oncologist's care during that radiation period. (This, also no initial staging reason for fleeing Stockton to Stanford ....) Says he will reevaluate after the initial round - but see how different things are here - you have already seen your oncologist again and I won't see anyone until right before the second cycle. So far no big issues with pooper functions.

Monday/Tuesday I had a terrible steroid crash - emotions! Got Ativan rx so sleep no longer an issue. Wednesday I drove into Stockton (40 mins) for lunch/visit w/friends, shopping bought a spring shirt and scarf I don't need, and grocery shopping. Loaded up on cakes and pies no idea why. Yesterday spent most of the day cleaning house, laundry, and shampooing carpets (dog counter surfed a lemon meringue pie in the middle of the night ...) Normal is GREAT! Today will get back on walking program - weather should be wonderful!

Sounds like you are doing well - congrats! Keep up the inspiration!

2 TSB of liver (fresh, pate, or canned liverwurst) is the only iron and folate supplement we've used since dumping the commercial iron pills, after a month or two of immunochemo. Of course we use more vitamin C too, which also helps absorb iron from food.

We use(d) more detailed, high potency vitamin and nutraceutical mixes made from scratch at home rather than just a multivitamin. This way we can dump inferior or interfering parts and focus on good components at therapeutic doses.

Monday/Tuesday I had a terrible steroid crash - emotions! Got Ativan rx so sleep no longer an issue. Wednesday I drove into Stockton (40 mins) for lunch/visit w/friends, shopping bought a spring shirt and scarf I don't need, and grocery shopping. Loaded up on cakes and pies no idea why. Yesterday spent most of the day cleaning house, laundry, and shampooing carpets (dog counter surfed a lemon meringue pie in the middle of the night ...) Normal is GREAT! Today will get back on walking program - weather should be wonderful!

I totally get the pies and cakes. I did find I could eat a bite of ice cream so long as I hold in front of mouth. Can't touch the dish or container though.

Yes, I see oncologist on the Mondays or Tuesday after infusion.
S

rp1954 wrote:2 TSB of liver (fresh, pate, or canned liverwurst) is the only iron and folate supplement we've used since dumping the commercial iron pills, after a month or two of immunochemo. Of course we use more vitamin C too, which also helps absorb iron from food.

We use(d) more detailed, high potency vitamin and nutraceutical mixes made from scratch at home rather than just a multivitamin. This way we can dump inferior or interfering parts and focus on good components at therapeutic doses.

I am not a fan of liver but do like brunsweiger, a German liver sausage. I will see if I can get a clean version at butcher.

S

There are a lot of similarities between your treatment and mine and I just finished the fifth cycle. I started out at 4000 mg/day of Xeloda and dropped down to 3,500 mg/day on the fourth cycle. On the Oxaliplating, I was at 100% for two cycles and the second cycle was very hard and we dropped to 75% on the third and 70% on the fourth and skipped the fifth. The first four were during times of very cold weather and it was quite challenging dealing with the cold sensitivity.

I had issues with eyelids freezing or not responding, tingling, etc. A balaclava helped with breathing when outside and I covered my self completely when it was cold outside. Having to drink warm drinks was a challenge. I got an electric kettle to make water quickly but I also bought a pair of 40 oz stainless steel vacuum containers which can keep drinks hot or warm for about twelve hours.

The Oxaliplating symptoms decrease with time in general. They didn't for me after the fourth cycle which is why we skipped it for the fifth cycle.

It can be a challenge figuring out which symptoms are coming from which drug but, for me, I get arthritic feelings from the Xeloda in the form of joint stiffness or pain and the tinglies from the Oxaliplatin. The tinglies dissipate with time and the arthritic feeling increases until the off week.

On cramps, I find that adding electrolytes (calcium, sodium, magnesium and potassium) help a lot. It's usually worst on the infusion day. I find that Zuun tablets (you dissolve them in water) work quite well but you can take individual tablets too. The oncologist added Magnesium to the IV on one of my infusion cycles. I think that the Xeloda can also cause diarrhea which shows up as a lot of watery bag output. It's good to maintain hydration (water + electrolytes) when this happens. It is nice to know that you're in the latter stages of treatment in this long marathon.

[quote="NHMike"]There are a lot of similarities between your treatment and mine and I just finished the fifth cycle. I started out at 4000 mg/day of Xeloda and dropped down to 3,500 mg/day on the fourth cycle. On the Oxaliplating, I was at 100% for two cycles and the second cycle was very hard and we dropped to 75% on the third and 70% on the fourth and skipped the fifth. The first four were during times of very cold weather and it was quite challenging dealing with the cold sensitivity.

Thanks Mike,
I have been pacing myself based on your experiences. I am feel totally normal after first round of chemo, would love to believe this is the way the it will always be but know it isn't so. Only side effect of real consequence is the cold issues with mouth, hands and feet. It shot up to 80 degrees today so I really wanted something cool but made it with warm water. I can't imagine how it felt there.

My hands are working normally for typing again, can do gardening, crochet. I think the worst of my experience was the Oxali. I am going to try the prechemo fast for next round. Also ditched everything folic acid, not so hard as I love to bake.

Look forward to hearing more

S

Mucousy diarrhea? This is my second, one last week too. Reading other posts this is normal. Freaky. Good news is I felt urge, could walk not run to toilet.

Caat55 wrote:Mucousy diarrhea? This is my second, one last week too. Reading other posts this is normal. Freaky. Good news is I felt urge, could walk not run to toilet.

I get that with Irinotecan but ostomy catches it so that's convenient right now after chemo yesterday. I am taking potassium pills daily because my level dropped to 3.3 and now normal after just one pill a day after a week. I have magnesium too which they didn't test recently but I figured it was low before so might as well supplement.

In regards to Folic Acid, I don't think it interferes with my chemo cocktail but it kind of disgusts me that it is in EVERY baked item except for rice based products. I'm buying organic bread which doesn't list it as an ingredient just because and going to make sure it's not in my flour.

Good luck with your ongoing treatments, sounds like you're managing well! More rain coming this weekend for us and probably you too!

Take care,

Shana

This was not in my ileostomt but my butt. I felt like I needed to have a BM, and did.
I have read it happens but not how regularly. Any help out there?

Caat55 wrote:This was not in my ileostomt but my butt. I felt like I needed to have a BM, and did.
I have read it happens but not how regularly. Any help out there?

Might be stuff flowing down the other opening of the stoma. I sleep on an incline to reduce this.

So you experienced it too? At least I know I can still feel it and control urge. I worry about that after reversal as tumor was pretty far down

Caat55 wrote:So you experienced it too? At least I know I can still feel it and control urge. I worry about that after reversal as tumor was pretty far down

They weren't BMs - but they were dark colored and in small pieces and not hard at all. I haven't seen them for quite some time. I think that it happens if stuff pools around the stoma. The stuff for the past two months has been clear and mucousy.