Starting chemo on monday

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TMac52
TMac52 Member Posts: 352
edited March 2014 in Colorectal Cancer #1
I started my cancer journey with 6 weeks of 5fu--24/7 and daily radiation treatments side effects kept me from having the surgery for 14 weeks. I had the surgery to remove my rectum and place a perminent colostomy ( no one said they would sew up my butt)!!! I am 10 weeks removed from surgery had some complications but doing better. I am starting 4 months of 5fu and oxsaliplatinum 48 hours every 2 weeks. I am so grateful to be alive. does any one have a similar story r are familiar with this chemo treatment. I would like to know what to expect this time i hate surprises.
Tom

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  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Welcome to the board
    Sorry that you need this information, but glad you have come here where the folks are very caring and sharing.

    I had similar surgery March of this year, but have no experience with the chemo. I am sure others here will be along to help give you that info.

    Good luck with your treatment. Stay in touch and let us know how you are doing.

    Marie who loves kitties
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Welcome TMac
    You have come to the right place - full of knowledge, compassion, laughter, etc. Best wishes to you.
  • SandMb
    SandMb Member Posts: 10
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    Hi Tom. Your treatment
    Hi Tom. Your treatment sounds similar to mine. Rectal cancer, the 6 week regimen with radiation, then surgery and then chemo follow up with 8 treatments of 5FU and Oxaliplatin (also referred to as Folfox). The only difference is your colostomy. I had a temporary ileostomy that they reversed after I finshed the follow up chemo. If they had to do the colostomy for you it sounds like the tumor was in the lower section of your rectum and they couldn't save the rectum. I can only assume that since you didn't profile yourself. What stage was the cancer? and did they find anything in the lymph nodes from the tumor pathology?

    I can only tell you what I experienced with the Folfox, everyone is different. I also tried very hard to keep myself very healthy, eat right, exercise, give my body a good environment to fight the chemo effects. During the treatment I didn't have any bad side effects. I felt a little crappy but that would subside. I did dehydrate towards the end. I just couldn't take enough by mouth. You have to be very careful of that.

    My side effect hit me "after" I finished the treatment. 2 months later I got hit with peripheral neuropathy pretty severely. I am still dealing with it. This is my third month. Alot of people get it during the chemo, so you need to report that immediately if you feel anything so they can adjust your dose of Oxi. This side effect is probably one of the worst you could get, so be very aware. The feeling crappy you can get over. The neuropathy is very challenging.

    I would recommend not only making sure you're eating properly but start taking supplements now, Vit B complex (make sure healthy amount of B12 in it) and Alpha Lipoic Acid. And a vit/min supplement.

    And one last very critical suggestion: no alcohol. Period. No good with the chemo and especially no good when you're trying to prevent neuropathy.

    Good luck. You can make it through. I'm sending you positive mojo.
    Susan
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Treatment
    My rectum was also removed but they made a j-pouch (had a temporary ileostomy). Started out with radiation/xeolda then six weeks later surgery then six weeks later the Folfox (including the oxy that you will be on). The oxy is a hard drug on your system as it is cumulative and the more you get the more side effects you get. Do NOT go near or drink anything cold for the first several days. Even if you had tears well up in your eyes will feel like needles so be very careful. The neuropathy is the worst and I'm a year out and still dealing with it. I'm NED (no evidence of disease) though and thankful that my surgeon was excellent. Good luck on your treatment on Monday and let us know how you are doing.

    Kim
  • Kenny H.
    Kenny H. Member Posts: 502 Member
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    Treatment
    My rectum was also removed but they made a j-pouch (had a temporary ileostomy). Started out with radiation/xeolda then six weeks later surgery then six weeks later the Folfox (including the oxy that you will be on). The oxy is a hard drug on your system as it is cumulative and the more you get the more side effects you get. Do NOT go near or drink anything cold for the first several days. Even if you had tears well up in your eyes will feel like needles so be very careful. The neuropathy is the worst and I'm a year out and still dealing with it. I'm NED (no evidence of disease) though and thankful that my surgeon was excellent. Good luck on your treatment on Monday and let us know how you are doing.

    Kim

    X2 on the cold drinks.Came
    X2 on the cold drinks.
    Came home and forgot what I was told about that. Went to get some ICED tea and Yikes! quickly reminded.
    Also be sure to ask for nausea meds. Needed them every night for like 3 days after infusion the 1st time.
    Have a perm colostomy also (9/15). Once get the hang of changing/dumping bags its as normal & routine as before. Got used to it quick.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Hi
    Welcome to the board. Sorry you have to be here but, you've come to the right place for support, answers, experience and a few laughs thrown in too.

    I have posted in my blog about my first 3 FOLFOX treatments. If you're curious just click on my name and go to the blog. Be prepared. I sprinkle a bit of humor in there and I'm not too shy about just throwing things out there for everyone to see.

    Wishing you all the best.

    PS: did you know that when they sew it up the butt most of the patients call it Barbie butt. Like the barbie doll who only has a crack but no butthole (can I say that here)? Hope I didn't offend you. HUGS
  • plh4gail
    plh4gail Member Posts: 1,238 Member
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    Me too
    Hi Tom, I'm right with you. I did the radiation/5FU, and then the resection. And I start the Oxapilatin and 48 hour 5FU on Tuesday. So.....let me know how you do.

    Gail
  • TMac52
    TMac52 Member Posts: 352
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    SandMb said:

    Hi Tom. Your treatment
    Hi Tom. Your treatment sounds similar to mine. Rectal cancer, the 6 week regimen with radiation, then surgery and then chemo follow up with 8 treatments of 5FU and Oxaliplatin (also referred to as Folfox). The only difference is your colostomy. I had a temporary ileostomy that they reversed after I finshed the follow up chemo. If they had to do the colostomy for you it sounds like the tumor was in the lower section of your rectum and they couldn't save the rectum. I can only assume that since you didn't profile yourself. What stage was the cancer? and did they find anything in the lymph nodes from the tumor pathology?

    I can only tell you what I experienced with the Folfox, everyone is different. I also tried very hard to keep myself very healthy, eat right, exercise, give my body a good environment to fight the chemo effects. During the treatment I didn't have any bad side effects. I felt a little crappy but that would subside. I did dehydrate towards the end. I just couldn't take enough by mouth. You have to be very careful of that.

    My side effect hit me "after" I finished the treatment. 2 months later I got hit with peripheral neuropathy pretty severely. I am still dealing with it. This is my third month. Alot of people get it during the chemo, so you need to report that immediately if you feel anything so they can adjust your dose of Oxi. This side effect is probably one of the worst you could get, so be very aware. The feeling crappy you can get over. The neuropathy is very challenging.

    I would recommend not only making sure you're eating properly but start taking supplements now, Vit B complex (make sure healthy amount of B12 in it) and Alpha Lipoic Acid. And a vit/min supplement.

    And one last very critical suggestion: no alcohol. Period. No good with the chemo and especially no good when you're trying to prevent neuropathy.

    Good luck. You can make it through. I'm sending you positive mojo.
    Susan

    Hi Susan,
    I started

    Hi Susan,
    I started treatment today so far so good. Thanks for the advise I will put it into practice. As if you couldnt tell i am a novice at discussion boards and just checked my post today. I look foward to learning more on this and making some friends that know what I,m going through. Thanks for the mojo!
    Tom
  • TMac52
    TMac52 Member Posts: 352
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    plh4gail said:

    Me too
    Hi Tom, I'm right with you. I did the radiation/5FU, and then the resection. And I start the Oxapilatin and 48 hour 5FU on Tuesday. So.....let me know how you do.

    Gail

    Thanks so much all of you
    Thanks so much all of you for the advise i look forward to getting to know all of you.
  • TMac52
    TMac52 Member Posts: 352
    Options
    Lori-S said:

    Hi
    Welcome to the board. Sorry you have to be here but, you've come to the right place for support, answers, experience and a few laughs thrown in too.

    I have posted in my blog about my first 3 FOLFOX treatments. If you're curious just click on my name and go to the blog. Be prepared. I sprinkle a bit of humor in there and I'm not too shy about just throwing things out there for everyone to see.

    Wishing you all the best.

    PS: did you know that when they sew it up the butt most of the patients call it Barbie butt. Like the barbie doll who only has a crack but no butthole (can I say that here)? Hope I didn't offend you. HUGS

    I would rather say i have a
    I would rather say i have a ken butt!!haha
  • TMac52
    TMac52 Member Posts: 352
    Options
    Kenny H. said:

    X2 on the cold drinks.Came
    X2 on the cold drinks.
    Came home and forgot what I was told about that. Went to get some ICED tea and Yikes! quickly reminded.
    Also be sure to ask for nausea meds. Needed them every night for like 3 days after infusion the 1st time.
    Have a perm colostomy also (9/15). Once get the hang of changing/dumping bags its as normal & routine as before. Got used to it quick.

    yep had the same thing
    yep had the same thing happen tonight drinking cold water............ouch!!! And then washing hands in cold water..hurts!!!
  • TMac52
    TMac52 Member Posts: 352
    Options

    Treatment
    My rectum was also removed but they made a j-pouch (had a temporary ileostomy). Started out with radiation/xeolda then six weeks later surgery then six weeks later the Folfox (including the oxy that you will be on). The oxy is a hard drug on your system as it is cumulative and the more you get the more side effects you get. Do NOT go near or drink anything cold for the first several days. Even if you had tears well up in your eyes will feel like needles so be very careful. The neuropathy is the worst and I'm a year out and still dealing with it. I'm NED (no evidence of disease) though and thankful that my surgeon was excellent. Good luck on your treatment on Monday and let us know how you are doing.

    Kim

    Thank you Kim.

    Thank you Kim.