Chemo treatment experience /help

mayslee
mayslee Member Posts: 3 Member
in Colorectal Cancer #1

Hi - I am currently diagnosed with colon cancer. I have just had my surgery and now moving on to Chemo treatment. I had a choice of CAPEOX or FOLFOX. I am wondering if anyone can share their experience?

I understand that for FOLFOX, a port needs to be implanted for the infusion.

For CAPEOX, a port is not needed. But I am wondering if anyone had any experience with the port and would recommend it or would just go with the IV?

Thanks in advance for your information

Comments

  • Carlafr51
    Carlafr51 Member Posts: 1 *
    #2

    I personally had the port put in when I received my folfox Treatments due to the fear of my vein being blown out, chemo is very hard on the veins, the port surgery is simple and when you have the port it’s so easy for the nurse to access for chemo or any blood work.I always ask for lidocaine to numb my port before they accessed it and you never felt a thing. Does make life a little easier especially when your constantly having your blood work done. Hope this helps, Take Care and God Bless!

  • mayslee
    mayslee Member Posts: 3 Member
    #3

    Thank you for much for sharing your experience with the port.

    My doctor also recommended folfox for me. I was very stressed about going through surgery to have the port. I am feeling better now finding more information and the benefits of having one.

    Do you have any advice on the folfox side effects and any suggestions how to handle the infusion bag?

    Thank you again. Any information will be helpful.

  • Arx001
    Arx001 Member Posts: 5 Member
    #4

    Hi,

    I was suggested by multiple oncology nurses that a chemo port is better to have. Also my oncologist's suggestion was to have one so I am having one. Some tips:

    1- Discuss with your oncologist and surgeon if you want to have it on your left or right as it may matter if you are driving.

    2- You will abstain from sudden/strong movements on that arm as long as you have the port. This means no to tennis and golf etc similar sports.

    3- My port is being solely used for the chemo and not for taking blood etc. The nurses abroad (I’m outside the US) are afraid that there may be an infection so they install and remove the infusion (the bottle with the chemo liquid such as 5-FU) very carefully with a strict protocol.

    4- I wear it roughly for 50 to 54 hours and where I live a nurse comes home to have it removed. If you will go to an ER to have it removed, then it would be 46-48 hours. Sleeping is a bit difficult at the beginning but you get used to. You will not have a shower during that time but I always washed my body and hair as much as I could.

    Chemo side effects are different for everyone. I never vomited (unlike my mother who had a horrible time on her death spiral decades ago) but whatever existing health issues you have, make sure to remember them in detail and communicate these to your oncologist. Something minor (very mild tinnitus) could get much worse as it did in my case with oxaliplatin so we had to stop it after I had serious hearing problems. Luckily I had a slight recovery afterwards…

    My humble suggestion is, understand your treatment and listen to your body - do not just leave it to doctors assuming they would know everything. I am not doubting their qualifications. It’s just that you may experience very rare side effects like I did and at that grey zone where medical data is rare, managing things could turn into a full time job with critical consequences.

    Best wishes.

  • mayslee
    mayslee Member Posts: 3 Member
    #5

    Dear Arx001, thank you so much for the information and tips.

  • shorttrack
    shorttrack Member Posts: 1 *
    #6

    I went through 12 rounds of “5FU” I wasn’t given the option for the port. I would say the port is convenient, mine is still uncomfortable and going on 2 years end of Jan when it was placed in! But well worth it for sure besides always having a constant reminder. Make sure to Use the cream to help prior to an infusion. I would recommend getting a bag of fluid when you go back for removal of “purse that was always at your side!!” The bag of fluids helps especially when you start to notice cold sensitivity which is no joke! I currently still have issues with peripheral neuropathy and at times my tongue gets uncomfortable with cold drinks and food. Stay strong, stay positive and listen to your body during this “ journey!” You got this and good luck

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