Hi all, a bit out of the loop...but have some questions

Nana2
Nana2 Member Posts: 255
in Colorectal Cancer #1
Haven't been on for awhile. Will need to do some catching up. We went to the Cancer treatment centers of America on the 17th of March and Jim started treatment with them on the 21st.
Here at home he had been on 5-FU with avastin and irinotican. He received four treatments of that before his last scans the first of March(the first one didn't include avastin and none of them were given with Leucovorin because they told us it was unavailable and that it wouldn't affect the effectivness of the treatment)
At the Cancer Treatment Center of America, they changed him to avastin, irinotican and xeloda. He did one week on the pills and ended up in the hospital with a 0.3 WBC. and a low grade temp. He remained there all week on IV antibiotics. His diarrhea was horrible.
I'm not sure I understand the reason for xeloda vs. the 5FU infusion. The onc up north also told us he would never give 5fu infusion without the leucovorin like the Doctor was doing here.
So any input on xeloda vs 5FU infusion?
5FU infusion without Leucovorin?

Also for your information, the naturopath up north put him on the following
L-Glutamine Powder 1 TBS=10grams 3x daily x 5 days after chemo (To prevent mouth sores, diarrhea and numbness tingling in toes and fingers.)
Char-Caps 4tabs 3x daily for 4 days starting one night prior to irinotican (To help prevent diarrhea)
Acetyl L-Carnitine Powder 1tsp. 3grams orally 2x daily (to help support energy metabolism and for nerve tissue restoration.)
Vitamin B 6 100mg 3x daily
Vitamin D 5000 units daily

Not sure what we're going to do now.
Keeping all of you in my thoughts and prayers.
April

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    April
    April

    The Leucovorin "complements" the 5fu infusion and better facilitates its effects. Of course, 5fu can be given without it - I've had it done both ways before. We were actually on a Leucovorin shortage up at my facility for a couple of cycles.

    Difference in 5fu and Xeloda? The Xeloda converts itself to 5fu when it comes in contact with cancer cells. It does have a way of quickly making your feet peel and shed and hurt really badly. The pump does not get you to that degree unless you do it for six weeks straight, and then there can be some blistering.

    I found that the Xeloda or 5fu is miseable on my stomach - if I had to choose, I'd take the pump over the pills, having done both of them. But their effectiveness is considered equal. Some oncs choose one or the other. My old onc had me on both of them at different times.

    Hang in there!
    -Craig
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    April:
    More than likely the Irinotican is responsible for the diarrhea. It was with George. Chemo nurse said some have it much worse than others. George had it constantly to the point he could not sit down to dinner without getting up several times to use he bathroom. Immodium AD didn't seem to work but George was not taking enough of it. So he upped the Immodium but taking too many pills doesn't sit well with me so I started giving him some foods and in combination with the Immodium AD did the trick. He still goes a lot, but about 75% less than before. He is not as drained and has stopped losing weight.

    George is not on 5FU anymore, just pre med nausea med, decadron, avastin and the irinotican also known as Camptosar or CPT-11. Never had the Xeloda but while on 5FU did not have bathroom or stomach issues.

    I'm so sorry Jim is having such a difficult time, looks like you are back to square one. Could the supplements be the problem that he is just not adjusting to them? George, at this point in time, does not take supplements.

    A while back Brooks posted about a diarrhea medication that finally did the trick for him, so maybe Jim needs something strong like Brooks got? Do a search and his post should come up.

    Take care - Tina
  • Nana2
    Nana2 Member Posts: 255
    #5
    unknown said:

    This comment has been removed by the Moderator

    Thanks Graci, I don't know
    Thanks Graci, I don't know what he wants to do at this point. I think he wants to stay here. I want to see him finish three treatments there and follow up with scans. We'll see.
    Thanks for the good word
  • Nana2
    Nana2 Member Posts: 255
    #6
    Sundanceh said:

    April
    April

    The Leucovorin "complements" the 5fu infusion and better facilitates its effects. Of course, 5fu can be given without it - I've had it done both ways before. We were actually on a Leucovorin shortage up at my facility for a couple of cycles.

    Difference in 5fu and Xeloda? The Xeloda converts itself to 5fu when it comes in contact with cancer cells. It does have a way of quickly making your feet peel and shed and hurt really badly. The pump does not get you to that degree unless you do it for six weeks straight, and then there can be some blistering.

    I found that the Xeloda or 5fu is miseable on my stomach - if I had to choose, I'd take the pump over the pills, having done both of them. But their effectiveness is considered equal. Some oncs choose one or the other. My old onc had me on both of them at different times.

    Hang in there!
    -Craig

    Thanks so much Craig, I was
    Thanks so much Craig, I was feeling kind of bad about our local oncologist not giving Jim the leucovorin or at least telling him if it was really needed. The onc up north said he would never give 5fu without it and so it made me feel like Jim had missed something important. As for the feet and hands. He is mostly cold and feels like he has something in his shoe just under his toes, says it feels like his feet are fat or something. He has some pain in his feet too. I'm hoping the suppliments help. Did you use them?
    Thanks for responding Craig, it's good to hear from you.
    April
  • Nana2
    Nana2 Member Posts: 255
    #7
    geotina said:

    April:
    More than likely the Irinotican is responsible for the diarrhea. It was with George. Chemo nurse said some have it much worse than others. George had it constantly to the point he could not sit down to dinner without getting up several times to use he bathroom. Immodium AD didn't seem to work but George was not taking enough of it. So he upped the Immodium but taking too many pills doesn't sit well with me so I started giving him some foods and in combination with the Immodium AD did the trick. He still goes a lot, but about 75% less than before. He is not as drained and has stopped losing weight.

    George is not on 5FU anymore, just pre med nausea med, decadron, avastin and the irinotican also known as Camptosar or CPT-11. Never had the Xeloda but while on 5FU did not have bathroom or stomach issues.

    I'm so sorry Jim is having such a difficult time, looks like you are back to square one. Could the supplements be the problem that he is just not adjusting to them? George, at this point in time, does not take supplements.

    A while back Brooks posted about a diarrhea medication that finally did the trick for him, so maybe Jim needs something strong like Brooks got? Do a search and his post should come up.

    Take care - Tina

    Hi Tina, Thanks for posting.
    Hi Tina, Thanks for posting. What foods did you give George that helped? I do think Jim needs something stronger. I will check the old posts for what Brooks took. Is George doing okay now?
  • geotina
    geotina Member Posts: 2,111 Member
    #8
    Nana2 said:

    Hi Tina, Thanks for posting.
    Hi Tina, Thanks for posting. What foods did you give George that helped? I do think Jim needs something stronger. I will check the old posts for what Brooks took. Is George doing okay now?

    Nana:
    I stated really watching his diet. No fried foods from me. In the morning, I make sure he has a non-acid juice, Dole and Trader Joes has them, combo of apple/bannana usually. I also give him a banana, toast, juice in the morning. Take off on the BRAT diet. I make sure he has a protein drink in the morning for nutrients and vitamins and I don't give him gassy foods like broccoli, asparagus and the like. I push drinking on him until he gets irritated. Also Powerade type drinks with high elecrolytes and such. His diarrhea is at least 50 to 75% better, no longer going 10 plus times a day has stopped losing weight, and dehydrated look has improved. Also include rice dishes with dinner a few times a week. George's blood work showed slightly anemic and that is a bit better with today's blood work.

    Don't know if these slight changes made a difference but George said they did and he overall feels better.

    Take care - Tina
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #9
    Nana2 said:

    Thanks so much Craig, I was
    Thanks so much Craig, I was feeling kind of bad about our local oncologist not giving Jim the leucovorin or at least telling him if it was really needed. The onc up north said he would never give 5fu without it and so it made me feel like Jim had missed something important. As for the feet and hands. He is mostly cold and feels like he has something in his shoe just under his toes, says it feels like his feet are fat or something. He has some pain in his feet too. I'm hoping the suppliments help. Did you use them?
    Thanks for responding Craig, it's good to hear from you.
    April

    April - No Supplements
    Hi April

    I have not used any supplements at this time. I am watching all of those who are taking them however.

    My oncs have always been against using any supplements, or anti-oxidants during a chemo regime, so I've stayed with that approach. I will see how my fight turns out shortly utilizing this approach.

    If supplements are helping, Jim, then I think that's a good idea.

    Xeloda is really hard on the feet, not so much on the hands, but the feet, oh my!

    What might help him is to go to the store and get a tin of BAG BALM. It's a greasy cream that you can slather all over his feet about 3x a day, morning, evening, and before bed. Cover his feet front and back and then put socks on to hold in the moisture.

    Over time, this may help some of the tenderness and will give him some hydration in his feet as they tend to crack and peel and need the moisture. If he can get some soon, this might head off further difficulties.

    Good to see you as well:)

    -Craig
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #10
    You need to speak with a
    You need to speak with a Pharmacist. One of the side effects of Glutamin is diarrhea. Use both a naturopath and a pharmacist. The Pharmacist will tell you interactions. Vitamin D is also a diarrhea issue. I was on a lot of vitamin D also and stopped and got my diarrhea under control. Also pills with a lot of diarrhea does not make sense. Onne is passing the pill beofre they are disolved. Maybe consider liquid vitamins.

    I ate a banana and drank a 24oz gatoraid after every poop. This helped hydrate me and made my stomach feel better. Lomotil after every poop helped also.

    If the diarrhea does not go away, one may have a virus. I got tested for C. Dif. and the third test confirmed it. C.Dif. with the chemo was a diarrhea disaster for me.

    Best Always, mike

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