Progression

smokeyjoe
smokeyjoe Member Posts: 1,425 Member
in Colorectal Cancer #1
Well, I'm back on chemo. Xeloda.....spots he doesn't like in mesentry....CEA is at 3.5...this sucks... I'm sure I'll be asking all of you on Xeloda questions as this goes along....Oncologist suggested Foliri again as it was very successful for me...over the summer I just don't want to go in for infusions so I asked if I could try Xeloda...he actually said he'd go along with whatever I want to try...mhhhmmm...I was speechless today, but when I see him in two weeks maybe I'll come up with more, who knows.
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Comments

  • Julie061
    Julie061 Member Posts: 18
    #2
    Progression
    Here's to taking the meds and getting back to a break!

    My last treatment was xeloda and Avastin. Been on a break for a little over a year. It was my third time on xeloda. At first it only caused nausea and fatigue. I gained weight thinking if I just kept nibbling on stuff the nausea would subside, who knows maybe it helped. by the third round of xeloda I started getting tender and sore feet and hands. At the end of that one, I was sitting a lot with ice on my feet! But all in all, I've had worse.

    I wish you well in this next course of treatments and as I said maybe a break After this one.

    Enjoy your day.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #3
    Julie061 said:

    Progression
    Here's to taking the meds and getting back to a break!

    My last treatment was xeloda and Avastin. Been on a break for a little over a year. It was my third time on xeloda. At first it only caused nausea and fatigue. I gained weight thinking if I just kept nibbling on stuff the nausea would subside, who knows maybe it helped. by the third round of xeloda I started getting tender and sore feet and hands. At the end of that one, I was sitting a lot with ice on my feet! But all in all, I've had worse.

    I wish you well in this next course of treatments and as I said maybe a break After this one.

    Enjoy your day.

    Hey You....
    I know it sucks but what's a mother to do??? Hope the xeloda works out for you as its the lesser of the evils. I'm glad you have Folfiri to fall back on. It always worked well for me too. Let's just open an cold one and call it a day????? Take care girl!

    Jen
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #4
    progress not orogression
    In my I'm imagination, I flew half way round the world, I hopped into your shoes,
    I meditated my butt off and found my answer.

    More meditation, it will help you make the healthy choices, just like McDonald's advises.

    It's good to look at progression positively, as it's the most common experience we have with our curse.

    So as my cea rises, profession then I profess in peace, love and focus. If the treatments save the day, well we get another.

    If in the end it's my time, then I have progressed not my cancer.

    Sending big real hugs, smile today is another bonus, enjoy it, I am.

    We can win, I am a winner, so are you. What the race is , well it's our choice!

    Hugs,
    Pete
    Ps an extra smile, or juice or green veg cannot hurt
  • Luckygirl2
    Luckygirl2 Member Posts: 308
    #5
    xeloda
    I was put on this after we determined me and pump was not a good fit (I detested that thing). Nausea and fatigue, kept my hands and feet well lotioned so I was able to not experience the hand and foot issues and had the special mouthwash on hand but luckily missed out on that as well. I was on 14 days and off 7 with a cost after insurance of about $60 for each 14 day supply.

    Deb
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #6
    making progress
    Sorry the news wasn't better.

    Oncologist suggested Foliri again as it was very successful for me...I asked if I could try Xeloda...he actually said he'd go along with whatever I want to try.
    Our experience has been more modulation (CIM, MK4, PSK, b-glucans, COX inhibitors) is better, but one can't use the leucovorin part with Xeloda.

    We found COX2 (+NOS) and CA19-9 (+CSLEX1) stains on tumor slides clarified the situation well with regard to the LEF style support plan in addition to regular chemo. Amazing that these old biomarkers might help focus the treatment plan. We used vitamin C, including IV, to help deal with 5FU issues, where I've seen others report that asorbate improved side effects with 5FU and capecitabiine. Ditto uracil in the hand creams.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #7
    pete43lost_at_sea said:

    progress not orogression
    In my I'm imagination, I flew half way round the world, I hopped into your shoes,
    I meditated my butt off and found my answer.

    More meditation, it will help you make the healthy choices, just like McDonald's advises.

    It's good to look at progression positively, as it's the most common experience we have with our curse.

    So as my cea rises, profession then I profess in peace, love and focus. If the treatments save the day, well we get another.

    If in the end it's my time, then I have progressed not my cancer.

    Sending big real hugs, smile today is another bonus, enjoy it, I am.

    We can win, I am a winner, so are you. What the race is , well it's our choice!

    Hugs,
    Pete
    Ps an extra smile, or juice or green veg cannot hurt

    Well, picked up the
    Well, picked up the script...and had dinner so I took my first dose. Pharmacist says he has lots of people on this and he said it's on the very low end of giving side effects. But, he said it's so hard for him to tell patients what the side effects could be because there could be soooo many....but he finds everyone that gets it from him very rarely have side effects. Soooo, we will see, I tolerated Folfiri pretty well. Sucks.......sucks .... sucks. Had a feeling but was of course hoping for stable scans. Oncologist says it's in the fat.....I brought up lyposuction, he laughed...I wasn't joking!!! Okay here is my first question I read through the sheets I got and I don't see anything about sun sensitivity. Says to avoid anything that puts too much strain on the skin of hands and feet.....but is being in the sun an issue??
  • jjaj133
    jjaj133 Member Posts: 867 Member
    #8
    Hi, I had to go back on
    Hi, I had to go back on chemo last may. the onc. did not think th infusions were necessary. He did not want to risk more neuropathy. So I went on Xeloda. it was supposed to be 10 mths. i lasted 8 and then i started to develop hand/foot syndrome. He stopped everything in Nov. and so far so good.
    I had a bit of fatigue, but nothing compared to the other stuff. My only advice would be to tell your dr. immediately if your hands/feet start to get red/sore/tender.
    Good Luck,
    Judy
  • Julie061
    Julie061 Member Posts: 18
    #9
    jjaj133 said:

    Hi, I had to go back on
    Hi, I had to go back on chemo last may. the onc. did not think th infusions were necessary. He did not want to risk more neuropathy. So I went on Xeloda. it was supposed to be 10 mths. i lasted 8 and then i started to develop hand/foot syndrome. He stopped everything in Nov. and so far so good.
    I had a bit of fatigue, but nothing compared to the other stuff. My only advice would be to tell your dr. immediately if your hands/feet start to get red/sore/tender.
    Good Luck,
    Judy

    Xeloda one week on and one week off option.
    The last time I took it doc prescribed one week on and one week off. She had seen good results using this frequency. I liked it because there was a shorter countdown to get back to normal during the off weeks. Keeping your hands and feet well moisturized is smart. Do they also have you taking a vitamin b supplement to reduce side effects?
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #10
    Julie061 said:

    Xeloda one week on and one week off option.
    The last time I took it doc prescribed one week on and one week off. She had seen good results using this frequency. I liked it because there was a shorter countdown to get back to normal during the off weeks. Keeping your hands and feet well moisturized is smart. Do they also have you taking a vitamin b supplement to reduce side effects?

    Ask to be mixed with Avastin ! Just 1/2 hour infusion results
    Use to be very good, I'm on it and is working very good for the moment!
    Not hand and feet but stomach issues ( manageable) .
    Hugs Leena! Praying 4yu!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #11
    pepebcn said:

    Ask to be mixed with Avastin ! Just 1/2 hour infusion results
    Use to be very good, I'm on it and is working very good for the moment!
    Not hand and feet but stomach issues ( manageable) .
    Hugs Leena! Praying 4yu!

    I go see him in two weeks
    I go see him in two weeks and I'm going to brink up the Avastin....I'm on lovenox for blood thinner....somehow I don't think he'll want to bring avastin into the mix because of my histor of blood clots. But, no harm in asking. Tans...which Cox 2 inhibitor are you talking about Celebrex?? Or curcumin etc.... I should ask about the vitamin B. Which B vitamin helps.... Wonder how far into this do side effects start? I know on folfiri it was apparent instantly my tummy did not like this.......the hospital gave me this little "starter kit goody bag" promotional pouch it contained bag balm, and little pill carrying case to put in my purse, and this big pill sorter to line your pills out on a daily basis....ummm ya can't remember to take four pills in the morning and in the evening without a pill sorter to help you manage......the pill sorter looks confusing....
  • Julie061
    Julie061 Member Posts: 18
    #12
    smokeyjoe said:

    I go see him in two weeks
    I go see him in two weeks and I'm going to brink up the Avastin....I'm on lovenox for blood thinner....somehow I don't think he'll want to bring avastin into the mix because of my histor of blood clots. But, no harm in asking. Tans...which Cox 2 inhibitor are you talking about Celebrex?? Or curcumin etc.... I should ask about the vitamin B. Which B vitamin helps.... Wonder how far into this do side effects start? I know on folfiri it was apparent instantly my tummy did not like this.......the hospital gave me this little "starter kit goody bag" promotional pouch it contained bag balm, and little pill carrying case to put in my purse, and this big pill sorter to line your pills out on a daily basis....ummm ya can't remember to take four pills in the morning and in the evening without a pill sorter to help you manage......the pill sorter looks confusing....

    Vitamin B6
    Is supposed to help with hand and foot syndrome. Check with your doc first on everything;) You may want to check out this website: http://www.genentech-access.com/xeloda/patients
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #13
    Julie061 said:

    Vitamin B6
    Is supposed to help with hand and foot syndrome. Check with your doc first on everything;) You may want to check out this website: http://www.genentech-access.com/xeloda/patients

    Julie thanks a lot....the
    Julie thanks a lot....the hospital onc. pharmacist called me just a little while ago. I asked her about the B6, she was curious where I heard it from....asked me if nurse recommended it ...I said no....she asked if someone on it recommended it....Yes. She looked it up....said they're doing clinical trials in the U.S. said it can't hurt may help. So, she said 100 mg. per day. If I wanted to take it in a multi vitamin with B6. Again, thank you :) She carried on about skin on feet...I'm standing in water shoes getting ready to go on the jet ski...my feet will get wet as I'm the spotter boat for something.....probably this isn't the best for my feet, I didn't mention what I was about to embark on...she was already long winded enough about the creams and not rubbing my feet when I sleep!!! I guessing throtteling hanging on to the handlebars aren't gonna be too good either, threre is a good chop out there. Time will tell.
  • steved
    steved Member Posts: 834 Member
    #14
    smokeyjoe said:

    Well, picked up the
    Well, picked up the script...and had dinner so I took my first dose. Pharmacist says he has lots of people on this and he said it's on the very low end of giving side effects. But, he said it's so hard for him to tell patients what the side effects could be because there could be soooo many....but he finds everyone that gets it from him very rarely have side effects. Soooo, we will see, I tolerated Folfiri pretty well. Sucks.......sucks .... sucks. Had a feeling but was of course hoping for stable scans. Oncologist says it's in the fat.....I brought up lyposuction, he laughed...I wasn't joking!!! Okay here is my first question I read through the sheets I got and I don't see anything about sun sensitivity. Says to avoid anything that puts too much strain on the skin of hands and feet.....but is being in the sun an issue??

    Sun sensitivity
    The incidence of photosensitivity reactions on xeloda is reported at 0.1%- this is in clinical trial so probably is higherbt not huge. Best to cover up- just ask Pepe about a couple of weekends ago.

    Done loads of xeloda of teh years myself and tolerate it well- generally 10 days on and 4 off and don't feel much difference either way. Did 7 cycles mixed with avastin which seemed to hold my tumour (not reduce it) but probably you are right that avastin is not for you with your history.

    Best of luck,
    steve
  • steved
    steved Member Posts: 834 Member
    #15
    Not an expert but
    have they mentioned intraperitoneal chemotherapy at all. others here will know more and I understand it is usually done in colorectal cancer people with intraperitoneal carcinomatosis (lots of little spread in peritoneum) but HIPEC may be something to talk to your team about. Will depend on the anatomoy of the spread as to whether is an option (and lots of otehr factors I know little about but just a thought)

    steve
  • Vickilg
    Vickilg Member Posts: 281 Member
    #16
    Thinking of you
    Thinking of you and wishing you the best. Use a lot of lotion on hands and feet. Utter Cream is a good one. Slather it on and wear socks. I was told to do this before the symptoms but didn't and later regretted it. Drink a lot of water too. From my experience this was the easiest chemo to be on and I hope it is for you as well. Big hug!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #17
    Vickilg said:

    Thinking of you
    Thinking of you and wishing you the best. Use a lot of lotion on hands and feet. Utter Cream is a good one. Slather it on and wear socks. I was told to do this before the symptoms but didn't and later regretted it. Drink a lot of water too. From my experience this was the easiest chemo to be on and I hope it is for you as well. Big hug!

    my crc Friend on xeloda is doing the fastng and cheno
    We discussed fasting here months ago, it's got some interesting trials.
    So b6 might help, I have been on it for months, maybe my shot gun approach to shops will work for me.
    Goodluck.
    Hugs,
    Pete
    Ps my onc 3 here specialises in intrperintioneal mets, I will pick his brain next time we chat.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #18
    pete43lost_at_sea said:

    my crc Friend on xeloda is doing the fastng and cheno
    We discussed fasting here months ago, it's got some interesting trials.
    So b6 might help, I have been on it for months, maybe my shot gun approach to shops will work for me.
    Goodluck.
    Hugs,
    Pete
    Ps my onc 3 here specialises in intrperintioneal mets, I will pick his brain next time we chat.

    Thanks Pete....I don't know
    Thanks Pete....I don't know 'bout the fasting when I'm supposed to take the pills after meals, advised not to take it on an empty stomach. And when you take it twice a day every day I don't know how you'd fast? I just don't function well without food ;)
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #19
    smokeyjoe said:

    Thanks Pete....I don't know
    Thanks Pete....I don't know 'bout the fasting when I'm supposed to take the pills after meals, advised not to take it on an empty stomach. And when you take it twice a day every day I don't know how you'd fast? I just don't function well without food ;)

    SJ
    Xeloda will rot your innards...best to have something lining your stomach walls...

    Much debate about fasting when doing chemo...I don't have enough evidence to concoct an opinion about this...I never ate much but ate small and whatever I could tolerate.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #20
    smokeyjoe said:

    I go see him in two weeks
    I go see him in two weeks and I'm going to brink up the Avastin....I'm on lovenox for blood thinner....somehow I don't think he'll want to bring avastin into the mix because of my histor of blood clots. But, no harm in asking. Tans...which Cox 2 inhibitor are you talking about Celebrex?? Or curcumin etc.... I should ask about the vitamin B. Which B vitamin helps.... Wonder how far into this do side effects start? I know on folfiri it was apparent instantly my tummy did not like this.......the hospital gave me this little "starter kit goody bag" promotional pouch it contained bag balm, and little pill carrying case to put in my purse, and this big pill sorter to line your pills out on a daily basis....ummm ya can't remember to take four pills in the morning and in the evening without a pill sorter to help you manage......the pill sorter looks confusing....

    Blood thinner
    The reason I am off of Avastin is due to the blood thinners I am on after getting a stent put in. So I would not be surprised if you don't get the Avastin, but as you said, it doesn't hurt to ask, it was a great combination the Xeloda and Avastin for me.
    The pill sorter is actually great for someone like me without a great memory. I put it on the dresser and at a glance could remember that I'm supposed to take my pills that day, as I had issues with forgetting, before I had the pill sorter, I would have to take out the pills and count them to see if I had remembered to take them or not, my memory didn't last until the evening. LOL.
    Winter Marie
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #21
    smokeyjoe said:

    Thanks Pete....I don't know
    Thanks Pete....I don't know 'bout the fasting when I'm supposed to take the pills after meals, advised not to take it on an empty stomach. And when you take it twice a day every day I don't know how you'd fast? I just don't function well without food ;)

    EAT EAT EAT
    You really need the food with the Xeloda, please ignore any fasting ideas when on Xeloda, or you will be feeling the tummy hurts like h@ll affect!!!
    Winter Marie

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