Starting Chemo in 2 weeks

schnauzerheads
schnauzerheads Member Posts: 53 Member
edited March 2014 in Colorectal Cancer #1
First of all, I've been touched by the stories and support everyone has shared on this board. This seems to be a very honest and educated group, so I'm hoping I can learn something and possibly share an experience that will help someone later on.
I was diagnosed with stage 3 colon cancer, had the tumor removed with a resection. 2 of 14 nodes affected. The surgeon told me I'd need chemo only, and a radiologist confirmed. I met the oncologist today, a wonderful doctor. I'm trying to decide if it's better to do the FOLFOX IV every 2 weeks (and take home the pump for two days following the treatment) for 6 months or if the Xeloda pill and IV chemo every 3 weeks for 6 months... Has either of these been a good/bad experience for anyone in this group? I've been told about the burning hands/feet with the Xeloda, and don't know if I'd feel good about having to lower the dose..
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Comments

  • Nana b
    Nana b Member Posts: 3,030 Member
    Welcome!
    I had good

    Welcome!

    I had good results with folfox, and the only reason that I didn't take chemo in pill for, was because I was going to lose my hair. I didn't want anyone to know at work. I know crazy, but I was in the top three and didn't want this working for me to treat me differently. They never knew.

    I did have sensitivity to cold, restless leg syndrome, thinning hair, pain in feet, some other side affects For the most part, I did fine.

    Chemo has different affects on individuals.
  • jararno
    jararno Member Posts: 186
    Folfox
    Welcome....I am also stage 3, had the resection and had 7 nodes affected. I did the 12 rounds of the Folfox and finished about 3 months ago. I never lost my hair, but I had severe trots, nausea, and vomitting and had to take oral drugs ( Emend ) and use a Sancuso Patch to try to curb the sickness. ( These are very expensive ). I would not have been able to work due to the fatigue and nausea. Folfox also has a not so fun side effect of oversensitivity to cold. Drinking anything cold feels like having shards of broken glass in your mouth! ( very strange ). I also developed hand cramping which made my hands feel like lobser claws. My doses were reduced and this went away. Toward the last treatments I developed peripheral neuropathy in my fingers and toes.....this is a continuing problem, but may subside.

    The take home pump was OK, but somewhat annoying to drag around. I usually felt the worst after the pump was removed. As time went on the fatigue and other side effects did get worse.
    The treatment weeks were hard, the off weeks would be better, but the recovery time did take longer as time went on.

    Unfortunately I have not had any testing done since the end of the treatments, so I cannot tell you if this has worked. I will be seeing my Oncologist today and see what is my next step.

    I wish you the best of luck in this weird journey. You can do it! ( I am the biggest medical chicken around and I made it through!! )

    Best Wishes,

    Take Care,

    Barb
  • hopeforcure49
    hopeforcure49 Member Posts: 111
    Had both
    I had both. at first they did radiation and oral (Xeloda)high dose for 6 weeks daily. Had my surgery for tumor removal, 7 nodes pos. of 11 and bowel resection with ileostomy. It worked, tumor had shrunk greatly. But it mets to my liver. I had very little side effects with this. except radiation made me very tired and sleepy. I did not lose my hair nor did I have any other side effects. Then started the Folfox IV every 2 weeks x10 rounds. Then I had to have my liver resection. The first 3 rounds were difficult, but they got better. I had some nausea, rash on face, neck and back also on scalp and that itched the worst. But I also had Erbitux. The sensitivity to cold drinks only lasted the first 2 days of each treatment. The treatments in between were not bad and the off weeks were good. After I finished all 10, my hands and feet started feeling tingly and numb, but if you keep them warm and moving or walk to improve circulation it helps.I did lose some hair and it thinned very unmanageable. everyone is individual with side effects and results. I hope this helps your options. Blessings from Lourdes
  • schnauzerheads
    schnauzerheads Member Posts: 53 Member
    Nana b said:

    Welcome!
    I had good

    Welcome!

    I had good results with folfox, and the only reason that I didn't take chemo in pill for, was because I was going to lose my hair. I didn't want anyone to know at work. I know crazy, but I was in the top three and didn't want this working for me to treat me differently. They never knew.

    I did have sensitivity to cold, restless leg syndrome, thinning hair, pain in feet, some other side affects For the most part, I did fine.

    Chemo has different affects on individuals.

    Thanks!
    Just wanted to send a thank you note, I appreciate your taking the time to respond to my post. Nice to know I'm not alone, a world of info out there. All the best to ya!

    Kevin
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Schnauzerheads
    Welcome + sorry you need to be here, I have not taken zeloda, so I can't help you there. I am on folfox, irinotecan, leucovorin + avastin, + have tolerated it quite well with some side effects (fatigue, diarrhea, hair loss from the irinotecan are the main ones. Good luck with whatevever you choose.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Folfox
    I went the Folfox route and had a good response to that regimen. I found it very doable in terms of side effects. I did have an allergic reaction on my seventh infusion and stopped the Oxaliplatin for the remainder of my treatments.

    I am sorry you have to make such a decision. I would rather you were trying to decide between mint chocolate chip and butter pecan ice cream....

    Whatever decision you make, the board is here to help you along the way.

    Amy
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    Hello, I am also stage 3 and
    Hello, I am also stage 3 and had 6 of 12 lymph nodes. I did the 5 weeks of radiation and chemo, had resection, and had my 4th folfox yesterday. I am getting the Oxy and 5fu pump. No, I don't like the symptoms you mention and I feel new ones or more intense of the present ones with each treatment. By day 10 of the 2 week cycle the do seem to wear off a lot and I have more energy and appetite is better, tingles are there but less. I am 1/3 of the way there and plan to be done by my Birthday. (fingers are crossed and I'm knocking on the floor)

    Gail
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    Nana b said:

    Welcome!
    I had good

    Welcome!

    I had good results with folfox, and the only reason that I didn't take chemo in pill for, was because I was going to lose my hair. I didn't want anyone to know at work. I know crazy, but I was in the top three and didn't want this working for me to treat me differently. They never knew.

    I did have sensitivity to cold, restless leg syndrome, thinning hair, pain in feet, some other side affects For the most part, I did fine.

    Chemo has different affects on individuals.

    Raquel!....are you ready for
    Raquel!....are you ready for your trip??? :)Hope you and your hubby have a wonderful time!

    Have fun buddy, Gail
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Schnauzers???
    Kevin! First, welcome to the board... but before I talk cancer, I have to ask... DO YOU HAVE SCHNAUZERS??? OMG! Schnauzers are my all time favourite breed of dog. I have a mini-schnauzer named Bridget. She turned 13 in November and she is a spoiled little princess diva who totally runs my life :D

    Gee... getting back to the topic at hand... to tell you the truth, I'm not sure which one I would pick. Having gone the FOLFOX route myself and had horrible neuropathy/nerve damage in both legs below the knees and both feet... and then have been on the Xeloda pill for 6 months (Jun - Dec 2010) and had severe pain in my heels.... I'd say they both are about the same. Now, having said that, everyone's mileage will vary. The first time I was on Xeloda was for 6 weeks while I was getting radiation and I had absolutely no side affects... from the Xeloda or the radiation. The oxipiliptin in the FOLFOX caused the neuropathy/nerve damage... and since it was already there, I think that's why the Xeloda caused severe pain in my heels.

    Not everyone gets all the symptoms. Hand/foot syndrome is one of the possible side affects for Xeloda... but my hands were just fine. Not even drying out or anything. Whereas others have horrible problems with their hands. Go figure?

    I hated bringing home the pump... only because of the inconvenience. Try showering with this darn pump (size of a small baby bottle) always in the way and you aren't suppose to get it wet. Ha! Or sleeping and you roll on it... not comfortable ;D But that's just me whining... much rather carry a baby bottle around in a fanny pack than not be treated ;)

    How close is the clinic or hospital where you will be going to get the IV chemo? That would probably be my deciding factor. If it's far away, then I'd opt for the going every 3 weeks. If it's close by, then what the heck... go every two weeks and save the pill form for another time :D

    Welcome to the board!!

    Cheryl
  • schnauzerheads
    schnauzerheads Member Posts: 53 Member

    Schnauzers???
    Kevin! First, welcome to the board... but before I talk cancer, I have to ask... DO YOU HAVE SCHNAUZERS??? OMG! Schnauzers are my all time favourite breed of dog. I have a mini-schnauzer named Bridget. She turned 13 in November and she is a spoiled little princess diva who totally runs my life :D

    Gee... getting back to the topic at hand... to tell you the truth, I'm not sure which one I would pick. Having gone the FOLFOX route myself and had horrible neuropathy/nerve damage in both legs below the knees and both feet... and then have been on the Xeloda pill for 6 months (Jun - Dec 2010) and had severe pain in my heels.... I'd say they both are about the same. Now, having said that, everyone's mileage will vary. The first time I was on Xeloda was for 6 weeks while I was getting radiation and I had absolutely no side affects... from the Xeloda or the radiation. The oxipiliptin in the FOLFOX caused the neuropathy/nerve damage... and since it was already there, I think that's why the Xeloda caused severe pain in my heels.

    Not everyone gets all the symptoms. Hand/foot syndrome is one of the possible side affects for Xeloda... but my hands were just fine. Not even drying out or anything. Whereas others have horrible problems with their hands. Go figure?

    I hated bringing home the pump... only because of the inconvenience. Try showering with this darn pump (size of a small baby bottle) always in the way and you aren't suppose to get it wet. Ha! Or sleeping and you roll on it... not comfortable ;D But that's just me whining... much rather carry a baby bottle around in a fanny pack than not be treated ;)

    How close is the clinic or hospital where you will be going to get the IV chemo? That would probably be my deciding factor. If it's far away, then I'd opt for the going every 3 weeks. If it's close by, then what the heck... go every two weeks and save the pill form for another time :D

    Welcome to the board!!

    Cheryl

    Schnauzers
    Thanks Cheryl! We have 2 (Mattie and Marino), wish I could post pics for you, but trust me, they're toooo cute. Marino is 4 months, and a major bundle of spunk. You can't help but spoil them. The first oncologist I met with (wanted to get two or three opinions) is about 30-45 minutes away, so I agree that the distance is a factor. Plus the fact the pill would have me there every 3 weeks rather than every 2. I know the most important factor will be which one has the most potential for knocking this out. Next week I'll meet with a Dr 5 miles away. I'm leaning toward the pill, but the Dr is suggesting the IV and pump. Just want to do the best thing and beat this, have heard different things from friends who went through it. Mercy.... Your note was very helpful, and I appreciate that. Will keep you posted on what I do. Sounds like you're doing well, I hope this all finds you happy and healthy!!

    Kevin
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    Schnauzers
    Thanks Cheryl! We have 2 (Mattie and Marino), wish I could post pics for you, but trust me, they're toooo cute. Marino is 4 months, and a major bundle of spunk. You can't help but spoil them. The first oncologist I met with (wanted to get two or three opinions) is about 30-45 minutes away, so I agree that the distance is a factor. Plus the fact the pill would have me there every 3 weeks rather than every 2. I know the most important factor will be which one has the most potential for knocking this out. Next week I'll meet with a Dr 5 miles away. I'm leaning toward the pill, but the Dr is suggesting the IV and pump. Just want to do the best thing and beat this, have heard different things from friends who went through it. Mercy.... Your note was very helpful, and I appreciate that. Will keep you posted on what I do. Sounds like you're doing well, I hope this all finds you happy and healthy!!

    Kevin

    Hi Kevin , first of all welcome to the board,
    Concerning to FOLFOX, is not major problem to carry with the pump for a couple of days, it seems is more manageable and
    gives you less stomach issues than the pill.
    Hugs my friend and welcome again, hope to see you often here.
    Pepe.
    Barcelona.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Xeloda
    Hi Kevin,
    My chemo were, Oxiplatinin (That one I dislike)Avastin and Xeloda. I've also done Xeloda alone, so I can say for me I didn't suffer side effects from Xeloda, but then, that's just my body. As for the other two chemos, I didn't lose my hair,(it thinned, but everyone thinks it looks the same, apparently only I can tell the difference) still long, still blond, the one I didn't like was the Oxiplatinin, but sometimes we don't have options. That chemo regime worked very well on my tumors, shrinking those little buggers a lot. So I was on the three weeks on, one week off.
    As others have said, it's all different for everyone, which is why none of us, can really advise on which regime to go on for you. We'll certainly share our stories on them, and hope that which ever you choose, will have the least side effects for you.
    Just remember "immodian", that really helps with the diarrhea, best words of advise I can give you!!!
    Let us know how it goes. Welcome to our family, we're here for you.
    Winter Marie
  • llw
    llw Member Posts: 1

    Schnauzers
    Thanks Cheryl! We have 2 (Mattie and Marino), wish I could post pics for you, but trust me, they're toooo cute. Marino is 4 months, and a major bundle of spunk. You can't help but spoil them. The first oncologist I met with (wanted to get two or three opinions) is about 30-45 minutes away, so I agree that the distance is a factor. Plus the fact the pill would have me there every 3 weeks rather than every 2. I know the most important factor will be which one has the most potential for knocking this out. Next week I'll meet with a Dr 5 miles away. I'm leaning toward the pill, but the Dr is suggesting the IV and pump. Just want to do the best thing and beat this, have heard different things from friends who went through it. Mercy.... Your note was very helpful, and I appreciate that. Will keep you posted on what I do. Sounds like you're doing well, I hope this all finds you happy and healthy!!

    Kevin

    Fulfox and Oxaliplatin
    I am stage 4, resection in Jan 2010 and 1 node positive, nothing since (Thank you Lord). I did the fulfox, oxaliplatin and avastin for 12 weeks, been off since Sep with no recurrence or changes. I found it more tolerable as the weeks went by (nausea fatigue in early days) -- around mid treatment, very little nausea and little fatigue. Near the end, It hardly seemed like I was on Chemo at all. The worst was taking the pump home - I always felt my worst on pump days. I did develop an allergic reaction to the oxaliplatin on my 11th treatment - face turned as red as an apple and I looked like I had a superhero mask on - but that was the only time. I have a slight tingling in toes and fingers, but that seems to be diminishing. No hair loss, only some thinning, weight loss, but hey, that was a bonus. I have to say, CHEMO was much more tolerable than I thought it would be, but I am an optimist and I think that helps a lot. Good luck with whichever you decide...take the silver bullet -- as one doctor told me, your best shot is the first one.
  • maglets
    maglets Member Posts: 2,576 Member

    Xeloda
    Hi Kevin,
    My chemo were, Oxiplatinin (That one I dislike)Avastin and Xeloda. I've also done Xeloda alone, so I can say for me I didn't suffer side effects from Xeloda, but then, that's just my body. As for the other two chemos, I didn't lose my hair,(it thinned, but everyone thinks it looks the same, apparently only I can tell the difference) still long, still blond, the one I didn't like was the Oxiplatinin, but sometimes we don't have options. That chemo regime worked very well on my tumors, shrinking those little buggers a lot. So I was on the three weeks on, one week off.
    As others have said, it's all different for everyone, which is why none of us, can really advise on which regime to go on for you. We'll certainly share our stories on them, and hope that which ever you choose, will have the least side effects for you.
    Just remember "immodian", that really helps with the diarrhea, best words of advise I can give you!!!
    Let us know how it goes. Welcome to our family, we're here for you.
    Winter Marie

    Hi Kevin
    another canadian here....like Cheryl....I have done several months of xeloda alone and I have done several months with oxy and xeloda....the obvious advantage of the xeloda is it's portability....easy to take your pills every day. Like Winter Marie I had relatively few side effects with xeloda....some abdominal pain but no hair loss....oxy is not as easy as others have told you. Just one other thing....I was denied insurance coverage for xeloda because it was not administered by the hospital....no idea if this would apply to your plan but worth checking out.....stage 4 here with colon and two liver resections....

    welcome and ask away....

    mags
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Schnauzers :)
    Hehe... ok, I'm definitely going off topic here, but I just uploaded 5 pictures of my schnauzer, Bridget to my Expressions page. Just click on my name and then I believe somewhere on that page it will say "Expressions"... click on that... and you will be able to see why I melt when I see/hear about a schnauzer.

    I would love to see a picture of your two!! I bet they are as adorable as ever!! :)

    Cheryl
  • djm_2010
    djm_2010 Member Posts: 52
    Hello I'm dx with stage 2
    Hello I'm dx with stage 2 rectal cancer, all my 19 nodes are negative and all margins are negative. Initially before OR my docs thought I was stage 3 but after my neo adjuvant chemoeradiation it seems I have responded and with my prayers after my OR I was so happy to learn the good news. Currently I'm on xelox ( xeloda for 2 weeks and oxaliplalatin every 21 days) and after my 2nd dose my side effects are minimal. My doctor let me choose and she told me that it's the same with folfox and latest studies show that xelox is same with folfox in metastatic colorectal carcinoma and at least I would have more of a life with xelox that with folfox. I also choose xelox because I don't want to be admitted at the hospital for 3 days every 2 weeks since there is no pump available for take home here in the Philippines. So far the side effects that I have with xeloda is dry hands and feet and I just place lots of lotion, at first I had diarrhea but lately none whatsoever. With the oxaliplatin the side effects are more alarming because of the cold intolerance and neuropathy. My onco told me that my side effects would be minimal because I'm still young, 45 yrs and would tolerate it better. I would feel bad for about 3-5 days so I just stay at home and go to work after that. Just talk to your doc and decide whatever is best and more suitable for you. Keep your chin up, let's fight this cancer and we would definitely survive this. Take care and Godbless you!
  • schnauzerheads
    schnauzerheads Member Posts: 53 Member

    Schnauzers :)
    Hehe... ok, I'm definitely going off topic here, but I just uploaded 5 pictures of my schnauzer, Bridget to my Expressions page. Just click on my name and then I believe somewhere on that page it will say "Expressions"... click on that... and you will be able to see why I melt when I see/hear about a schnauzer.

    I would love to see a picture of your two!! I bet they are as adorable as ever!! :)

    Cheryl

    pics
    Hey Cheryl,
    Careful what you start, I've got thousands of schnauzer pictures, and I ain't afraid to post 'em! Marino is up on my expressions, and Bridget is one cute baby!! Will put more up there soon. :-)
  • schnauzerheads
    schnauzerheads Member Posts: 53 Member
    djm_2010 said:

    Hello I'm dx with stage 2
    Hello I'm dx with stage 2 rectal cancer, all my 19 nodes are negative and all margins are negative. Initially before OR my docs thought I was stage 3 but after my neo adjuvant chemoeradiation it seems I have responded and with my prayers after my OR I was so happy to learn the good news. Currently I'm on xelox ( xeloda for 2 weeks and oxaliplalatin every 21 days) and after my 2nd dose my side effects are minimal. My doctor let me choose and she told me that it's the same with folfox and latest studies show that xelox is same with folfox in metastatic colorectal carcinoma and at least I would have more of a life with xelox that with folfox. I also choose xelox because I don't want to be admitted at the hospital for 3 days every 2 weeks since there is no pump available for take home here in the Philippines. So far the side effects that I have with xeloda is dry hands and feet and I just place lots of lotion, at first I had diarrhea but lately none whatsoever. With the oxaliplatin the side effects are more alarming because of the cold intolerance and neuropathy. My onco told me that my side effects would be minimal because I'm still young, 45 yrs and would tolerate it better. I would feel bad for about 3-5 days so I just stay at home and go to work after that. Just talk to your doc and decide whatever is best and more suitable for you. Keep your chin up, let's fight this cancer and we would definitely survive this. Take care and Godbless you!

    Thanks
    Going with the Xeloda and FOLFOX, will see how I handle it. All of the feedback means alot!
  • herdizziness
    herdizziness Member Posts: 3,624 Member

    Thanks
    Going with the Xeloda and FOLFOX, will see how I handle it. All of the feedback means alot!

    when?
    What day does your chemo start? I know it's very soon. I just wanted to make sure I thought about you that day and send you my very best!!!
    Your puppy is sooo darn cute!!!! Just melts my heart every time I see the picture.
    Winter Marie
  • schnauzerheads
    schnauzerheads Member Posts: 53 Member

    when?
    What day does your chemo start? I know it's very soon. I just wanted to make sure I thought about you that day and send you my very best!!!
    Your puppy is sooo darn cute!!!! Just melts my heart every time I see the picture.
    Winter Marie

    Start
    I had the portacath inserted yesterday (they tried under the collar bone, no luck, so it's right at the base of my neck), followed by the PET scan. A bit freaked out about what he'll say, but one day at a time. So, we're hoping for early next week.... will post the day when I know for sure. I have a much better idea about what to expect, finding this site.
    That little pup ("Marino", we're Dolphins fans!) is 100% attitude... We've got our hands full with 6 animals, with him it's like having 10. :-) More shots of him on the expressions page if you want to check it out.
    Thank you SO much for the note, will be anxious to hear how you're doing also.
    All the best,

    Kevin