Irinotecan Chemo Drug

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Does anyone have experience of the drug? My husband has incurable cancer in his peritoneal. The Dr initially put him on the Capox chemo drugs but had to change him to a slightly different treatment as the tablets he was taking weren't agreeing with him so he was put on an IV pump. He went through treatment from March until June however he then had a blockage in his intestines which required surgery in August so the Dr reckons the initial chemo drugs didn't do any good. 

His type of cancer is rare & can't be seen on scans or detected through blood tests so the Dr is really treating him blind. She has mentioned that she would like him to try another combination of chemo drugs but this all depends if he can get himself strong enough as at the moment he is in quite a bit of pain. 

He had a pretty bad time with Capox (feeling ill and being in bed a lot with various visits to hospital between treatments) and still has problems with his balance & feeling in his fingers due to the nerve damage that has been done. I know everyone is different but was just wondering if anyone has had this drug, how you found it and what the side effects were like?

Thanks for reading.  

  • Hi . I’ve attached a link to the Macmillan page on irinotecan - it lists all the side effects but, like all chemo, it affects everyone differently so it’s hard to predict what side effects your hubby might experience.

    https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/irinotecan

    You could also type Irinotecan in the search box at the top of the screen? Some of the posts are quite old but might give you a bit of an insight?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thank you.

    Yes I had read this but was hoping to maybe hear from some peoples personal experiences.

    I will have a look for older posts, thanks again. x

  • I think  s husband was on that drug . I will tag her in and hopefully she will be able to help share .

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Hi. My husband was on a combination of irinotecan, 5fu and oxalaplatin this combination did work for him he's tumor shrank enough for surgery after surgery he went on mop up chemo as cancer was found in 1 out of 19 lymph nodes removed sadly the cancer returned 3 cycles In to the mop up chemo so my husband was then classed as incurable/palliative but the oncologist put him on immunotherapy nivolumab and he's December scan showed he is stable and also some shrinkage. When he was on chemo the side effects he had were nausea, tingling in hands and feet, hair thinning and fatigue as he was on a combination of drugs I can't specify which drug caused what symptoms. 

  • Thank you. My husband is incurable too, he has cancer in his peritoneum. He had chemo which included Oxalaplatin and another drug which I can't remember. He started on IV Oxalaplatin followed by tablets but he had a horrendous time so they out him on a 48hr pump for a different drug so it was all IV administered.

    The dr was quite positive after his scan towards the end of his chemo as it seemed to have shrunk the cancer however a month later he had surgery for a blockage in his bowel. The surgeon found more tumours that weren't visible on the scan which are unoperableand 6 weeks post op the oncologist said that he would most likely only have a few months left however there was another chemo treatment she would like to try. We all agreed to wait until the New Year so he could enjoy Christmas. 

    His cancer is rare so the oncologist doesn't know if this chemo will do any good. She didn't know if the original chemo would help and even though she thought it had helped to shrink the tumour in actual fact it hadn't helped at all. 

    Thanks for the info. 

    Good Luck with your husband. x 

  • Aww I really hope that the chemo helps. My husbands chemo was always given through a picc line at hospital then came home with the 5fu pump for 48 hours. 

    Is immunotherapy not an option for your husband? My husbands oncologist told us immunotherapy is some sort of miracle drug but we aren't getting our hopes up however he has had a fantastic response to it so fingers crossed.

    I hope you managed to enjoy Christmas xxx

  • Yes he got the PICC line halfway into his chemo last time. 

    Immunotherapy isn't something that has been mentioned. They have said that surgery and radiation aren't options. I will read into the immunotheray. 

    Thanks. 

    Good Luck to you and your husband on your journey x

  • My husband is inoperable too and like yours radiotherapy is not an option :( definitely mention immunotherapy side effects are so much easier than chemo too we have noticed.

    Good luck to you both on your journey too it's a hard one isn't it xxx

  • Yes the hardest thing ever. Unfortunately my husband was admitted to hospital yesterday & they say his bowel is partially obstructed. The surgeons have said there is nothing surgically that can be done. They are trying to get a handle on his pain so he can be comfortable. 

  • Aw I'm sorry to hear this xxx