just want to introduce myself

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libris
libris Member Posts: 23
edited March 2014 in Colorectal Cancer #1
I'm new here. Diagnosed in October 05 with rectal cancer after routine colonoscopy at age 51. I had 30 days of radiation therapy which was intended to be combined with a 5FU infusion. Unfortunately I had a cardiac reaction to the 5FU which landed me in the hospital for 2 days, so most of the radiation was given without the chemo support. I had sugery in February and the tumor, which had measured 4.5 cm, was virtually undetectable. The pathology report showed some malignant cells remaining in the excised tissue but the radiation had damaged them to the extent that it was impossible to determine if they were cells from the original tumor or cells from lymph node metastases. I've been out of work on recovery, tired, napping a lot, with a temporary ileostomy, but with great support from my family and my medical providers. Now I start chemotherapy in 2 weeks. Because of the reaction that I had to the 5FU back during my radiation they were ready to let me go without chemo, but I insisted that I would be uncomfortable with that, so I'll start 4 months of weekly treatment with irinotecan. This is not a common protocol. I wonder if anyone here has used irinotecan alone and what the side effects might be. Also how does one deal with serious diarrhea with an ileostomy? I'm scheduled to start work again the week before my chemo starts and I'm worried that the drive to and from (away from a bathroom) may be a problem!
Sorry to go on so long. I just found your site and you are clearly very knowledgable and caring. Thanks for any help or advice you can give.

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  • lfondots63
    lfondots63 Member Posts: 818 Member
    #2
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    Hi libris,

    I want to say I'm sorry that you are going through this but glad you found us. I am just starting chemo myself for Stage 3 colon and I am on the folfox so I can't help you with the new protocol. I am sure someone here will though. Sending good vibes your way that this one will work for you and be a breeze.

    Lisa
  • drmrgirl47
    drmrgirl47 Member Posts: 129
    #3
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    Welcome,
    Sorry you have to be here, but this is a wonderful place to come to. I have also had rectal cancer and at one time had to stop chemo and radiation for a month or so due to problems. I was on a different protocol from yours though. In answer to the diarrhea with the ileostomy, my doctor had prescribed lomotil if it got to be a problem. I guess you will have to see how fast the bag fills, etc. I am sorry I don't know anything about irinotecan. But you are better off with the ileostomy while you are having these treatments and these problems believe me. It would be awful for your hinney if you didn't have it. smile Good luck with the irinotecan. And never worry about your posts being too long. That is why we are all here. If you have any questions regarding the ileostomy (I had one for 6 months) please feel free to contact me and I will help you anyway I can. Love and prayers, Annette
  • spongebob
    spongebob Member Posts: 2,565 Member
    #4
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    Welcome to the Semi-Colons, libris!

    Sorry we had to meet under these circumstances, but glad you're here. You have joined a rather jovial, yet knowledgable group. They're great if you have questions, want to vent or just need a place to escape the reality of day to day life (some of the people here have been escaping life for a rather long time now... I will let them remain anonymous, but I know who you are!)

    Enjoy and welcome!

    - SpongeBob
  • terril
    terril Member Posts: 296
    #5
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    Hi!!!
    You have found a wonderful place to chat. Great support and caring people who will be here for you. I am on irinorecan (CPT-11), 5-Fu, Leuk, and Avastin. I can't really help you with the ileostomy questions, but the runs are present with many of the chemos that target the GI tract. My prayers are with you as you experience this cancer journey. Terri
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #6
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    hi and welcome,

    I was Stage 3 colon cancer lymph pos zero mets dx'ed 4 years 8 months ago.

    My onc recommended adjuvant chemo b/c of the lymph involvement. I said No Thanks.

    Your experience underscores what my fear was with the 5 FU. Frankly the chemo scared me more than the cancer. There is a percentage of people who die after the very FIRST treatment. I was not going there nor was I taking the chance.

    Instead I did alternative therapies and remain cancer free and no recurrences or mets to date. Nor do I suffer from peripheral neuropathy, nor do I fear kidney or heart damage, secondary cancers or luekemia, nor have I ever been hospitalized for severe diarrhea or dehydration all due to chemo.

    So for them to not administer any chemo isn't necessarily a bad thing. :-)

    If you are wondering about various chemos and side effects a good website is:

    www.cancerdecisions.com

    There is current factual info and data regarding many different chemos for all sorts of cancers.

    Hope you find your answers.

    peace, emily
  • CAMaura
    CAMaura Member Posts: 719 Member
    #7
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    Hi there - I am so sorry that you had a reaction to the 5FU, but chemo is hard on every system...quite a shock with or without the radiation. I do not have any history with or knowledge of the irionectin (sp!). Maybe someone else will be able to chime in. There are alternatives as Emily mentioned, and it isn't voodoo: strong, research-driven nutritional programs which are proven...on this site. So, this gives you something to think about (at least to peak your curiosity). I ahve to say that you are one trooper - you have had quite a shocker since last October and seem to be strong and ready to work hard to win; I am thrilled for you. Have you thought of seeking a few other opinions (MDs) to go over present and future protocols? More info might be helpful for you. Take care. All the best - Maura
  • goldfinch
    goldfinch Member Posts: 735
    #8
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    Just wanted to say welcome! I had the irinotecan, but i had it combined with 5 FU and avastin. Side effects were fatigue, constipation alternating with diarrhea. The iliostomy is a good thing to have while you're dealing with chemo. Annette is right! Much easier than what it would do to your poor butt. Imodium helps, or lomotil. And drink your fluids! You are at higher risk for dehydration with the iliostomy.
    Mary
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #9
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    Welcome to our group. I also had stage 3 rectal cancer diagnosed 3 years ago. I had preop 5fu chemo and radiation, tolerated well. After surgery I only had 4 out of 12 chemo treatments, 5 fu and leukovorin-- tolerated it poorly with diarrhea so bad I was in the hospital and it was decided to stop chemo. So far so good I remain NED.

    I am not familiar with that med, but I wish I had the ileostomy for chemo.

    Good luck and keep us posted.

    Maureen
  • kerry
    kerry Member Posts: 1,313 Member
    #10
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    Hi,

    I'm so sorry about your diagnosis and your reaction to the 5FU. Has your doctor mentioned Xeloda?? It is the oral form of 5FU and tolerated better for some people. I took 5FU for approx. 6 months along with Leukovorin and CPT11. Had lots of nausea, diahrrea, fatigue - my liver enzymes skyrocketed a couple of times (No Sponger it wasn't the Rum Punch) as well as very irritated colon (what is left of it). When I had a recurrance my doctor at MD Anderson put me on Xeloda + Oxaliplatin which I tolerated much better, even though the side effects caused the doctor to take me off Oxaliplatin. I have been on Xeloda for over a year now - NO nausea, but did have a reaction with my toenails. (weird)

    It might be worth asking about...

    Best of luck with your continued treatment.

    Emily is right on target with the nutrition thing. She ought to be a marketing agent for juicers. I think we all have one now.

    Kerry
  • libris
    libris Member Posts: 23
    #11
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    kerry said:

    Hi,

    I'm so sorry about your diagnosis and your reaction to the 5FU. Has your doctor mentioned Xeloda?? It is the oral form of 5FU and tolerated better for some people. I took 5FU for approx. 6 months along with Leukovorin and CPT11. Had lots of nausea, diahrrea, fatigue - my liver enzymes skyrocketed a couple of times (No Sponger it wasn't the Rum Punch) as well as very irritated colon (what is left of it). When I had a recurrance my doctor at MD Anderson put me on Xeloda + Oxaliplatin which I tolerated much better, even though the side effects caused the doctor to take me off Oxaliplatin. I have been on Xeloda for over a year now - NO nausea, but did have a reaction with my toenails. (weird)

    It might be worth asking about...

    Best of luck with your continued treatment.

    Emily is right on target with the nutrition thing. She ought to be a marketing agent for juicers. I think we all have one now.

    Kerry

    Thank you all for the terrific feedback! I'll be around here a lot so I'm sure you'll hear more from me. Emily, I've been going a traditional medical route so far but I do worry about the effects of all this. When my onc refused to put me back on the 5FU he said he didn't want me to end up dead in total remission! It's all very confusing.
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #12
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    libris said:

    Thank you all for the terrific feedback! I'll be around here a lot so I'm sure you'll hear more from me. Emily, I've been going a traditional medical route so far but I do worry about the effects of all this. When my onc refused to put me back on the 5FU he said he didn't want me to end up dead in total remission! It's all very confusing.

    Well I'm surely not dead!!! haha

    There is a TON you can do on your own or with the help of a NATUROPATHIC doctor.

    Read my post in pink's Nutrition thread.

    While you are still alive and kicking there is so much you can do if you are willing to take control of your path.

    Colon cancer is 80% dietary so there's a great place to start: With your diet!!!

    There are no guarantees either way, but choosing the optimal health way naturally will never give you regrets. It's work but worth it.

    They find that people who empower themselves, learn the most about their disease, and take action live longer. No surprise there.

    Go for it!

    peace, emily

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