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Progression

smokeyjoe
smokeyjoe Member Posts: 1,425
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.

Comments

  • Julie061
    Julie061 Member Posts: 18
    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
    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
    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
    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: 1,299
    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

    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
    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
    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
    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
    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
    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
    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
    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
    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
    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
    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

    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
    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
    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
    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 [email protected] affect!!!
    Winter Marie
  • janie1
    janie1 Member Posts: 753

    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 [email protected] affect!!!
    Winter Marie

    hey smokey!
    I didnt forget about you. Had rfa yesterday and chemo today.
    Sorry if there is some progression, was it the lymph node too....or the spots on abdomen doctor is wondering about. When was your last cea?
    Hang in there. I havent been on xedoda, so no experience there. If i could do folfiri as is for the next 30 years.....that would be fine with me.
    Hugs to you!.
  • tanstaafl
    tanstaafl Member Posts: 1,299

    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

    cim
    I suggest cimetidine as a consideration for partial replacement for VEGF inhibition, off label. In fact cimetidine was much more effective for Stage II and III CRC patients than (gasp) Avastin, since survival actually decreased for stage III patients on Avastin. Especially more favorable for CA19-9 (70-77% of mCRC patients) biomarked patients.

    What little data there is on stage IV CRC for cimetidine is actually very favorable but a very small test. Cimetidine has an advantage of being more accessible for long term maintenance treatment, too.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    janie1 said:

    hey smokey!
    I didnt forget about you. Had rfa yesterday and chemo today.
    Sorry if there is some progression, was it the lymph node too....or the spots on abdomen doctor is wondering about. When was your last cea?
    Hang in there. I havent been on xedoda, so no experience there. If i could do folfiri as is for the next 30 years.....that would be fine with me.
    Hugs to you!.

    Thanks Tans, I have
    Thanks Tans, I have cimitidine prescribed by onc., we didn't discuss it this appt. Janie my last cea was two weeks ago it was at 3.5, up for me, typically sits at 1 and under usually .5, so I was visibly shaken with that but GP said it's in the normal range.....yeah, not for me I instantly felt this was trouble!! Weird thing with the lymph node, no mention of that one beside the spleen, but he did show me the other one that's in a bad place between my vena cava and anothe major artery. There is all this new junk showing up in space he described as fatty tissue. I actually showed him a spot I can feel where my hernia is, just this hard little lump sitting under my skin by my bellybutton...just kinda floating there doesn't seem attached to anything. Janie where did you have the RFA done?? Lungs Liver?? Sorry I'm in a fog. How did that go??
  • tanstaafl
    tanstaafl Member Posts: 1,299
    smokeyjoe said:

    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.

    not folic
    I would suggest a multivitamin with L-5MTHF instead of folic acid, which disproportionately increases the toxicity more than the tumor kill. Less synthetic folic acid in "enriched foods" like bread is considered to be why Europeans are able to better tolerate Xeloda than North Americans.

    We actually formulate my wife's multivitamin mix at home because we use so much, formulated without the folic acid, and use high content L-5 MTHF food.
  • herdizziness
    herdizziness Member Posts: 3,624
    smokeyjoe said:

    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.

    Just remember one thing
    I didn't have any problem with my feet or hands doing any peeling or hurting, you may be the same, one never knows until it does or doesn't happen to them. So its okay to be prepared, but hopefully not expectant of a side affect. I also have a dark tan (I know, now I worry about skin cancer)and was out all the time while on Xeloda too, I actually used to burn, (light skinned and blonde with red natural tints) before chemo, but since chemo I just tan nicely, beats the burning any day. Understand I'm not recommending the sun that I get, just you may find that doing something you're not used to doing (covering all parts of your body up)may not be necessary. Take everything in a little at a time, this way you don't stress, and you find out what you tolerate. I think there are a few of us that didn't have affects from the Xeloda, so please remember every horror story may not be yours.
    So, here's hoping that you suffer few if any side affects from the Xeloda, that your tumors shrink and calcify and that you feel terrific!!!
    Thinking of you,
    Winter Marie
  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    smokeyjoe said:

    Thanks Tans, I have
    Thanks Tans, I have cimitidine prescribed by onc., we didn't discuss it this appt. Janie my last cea was two weeks ago it was at 3.5, up for me, typically sits at 1 and under usually .5, so I was visibly shaken with that but GP said it's in the normal range.....yeah, not for me I instantly felt this was trouble!! Weird thing with the lymph node, no mention of that one beside the spleen, but he did show me the other one that's in a bad place between my vena cava and anothe major artery. There is all this new junk showing up in space he described as fatty tissue. I actually showed him a spot I can feel where my hernia is, just this hard little lump sitting under my skin by my bellybutton...just kinda floating there doesn't seem attached to anything. Janie where did you have the RFA done?? Lungs Liver?? Sorry I'm in a fog. How did that go??

    Winter Marie....weird...I
    Winter Marie....weird...I have people commenting on how even a tan I have, that it looks like a spray on...I am very blond and typically burn very easily...this summer with this weather I have been going for a swim in the a.m. before I head into work....so I've gotten this slow tan without burning at all being in the sun at 9:00 in the morning. I actually took morning off and went for a ride with my son this morning in his boat....spur of the moment "mom you wanna come" and I didn't cover up or put sun screen on..was out there till 12:30....and I was all good so far. My lips are blistered from being at a ball tournament all weekend, darn Freezies, does it to me all the time....I know oncologists nurse is gonna give me a lecture....I got one last summer, she's worried about the blisters being a source of infection that could be severe.