Chemo for stage 4 bowel cancer followed by surgery

FormerMember
FormerMember
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Hi, 

Does anyone have any experience of having chemo to shrink stage 4 bowel tumours. I have been told by my specialist nurse yesterday that I need to have more chemotherapy which is meant to help shrink my tumours before having a resection with HIPEC at Basingstoke hospital.

I am not feeling positive about the chemotherapy as I had 4 sessions of oxaliplatin and capecitabine earlier this year as a mop up treatment after right hemicolectomy and unfortunately it didn't work. I don't have confidence now that more chemo treatment will help me. I thought they would do the surgery straight away to give me a chance but it seems not. I am hoping to get the apt to see the oncologist soon. Does anyone have any questions I need to ask him please. I am not coping well at present. I live on my own and sometimes don't feel like getting out of bed in the mornings. 

  • Hi 

    They insisted both times on chemo first for my mum. The only exception was her lung met where it took approximately two years to reach 8 mm. They explanation was it works best on a faster growing tumour due to the rate of cell division and chemo would have little benefit due to the rate of growth.

    Her liver tumours were different so they insisted on chemo first . She had the same chemo six months before but had shrinkage followed by a recurrence. Some may have not classed that as a success but the objective was the shrinkage to gain a better surgical margin . Better margin , easier surgery was how it seemed to go . Plus gives the opportunity to deal with any stray cells .

    Surgery is such a welcome and instant solution but in hindsight I attribute chemo to have played a significant role in my mums overall survival. At the time it was so frustrating and the process protracted. I totally understand it’s an emotional upheaval waiting on a plan then finding it is a bit further down the road but most , obviously not all in a stage 4 setting have some form of chemo followed by surgery or so it seems to me . I think solitaire mets sometimes have a different approach and there is obviously different clinical preferences. But on the whole that’s how it seems to go . Quite different to lower stages where they are inclined to operate first and belts and braces chemo . It does take a while to adjust to that but we are here anytime you need to chat it through .

    Anytime at all ,

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • FormerMember
    FormerMember in reply to court

    Thanks for your reply Court. Yes it is a bit of a roller coaster at the moment. I just hope and pray that the chemotherapy does what it is meant to and I can cope with the surgery. Just know how it affected me last time and I wouldn't have been strong enough to have surgery. I will just have to wait and see what the oncologist says to me. Do you have any idea what questions I should ask him?

    Hope you are having a good weekend. 

  • Hi Louloubelle, 

    My husband is in quite a similar position. He had his primary tumour removed as they found it during emergency surgery for what they thought was a ruptured appendix. However, the cancer had already spread to his liver. He's had 4 cycles of Capox (same drugs as you) and it worked on most of the tumours to shrink them, but not all. There's one particularly awful tumour that is very near the blood vessels and so they cannot do a liver resection at the moment. We were absolutely devastated when the surgeon told us as it felt so final.

    However, our oncologist is more much positive and John is starting another 4 cycles of Capox on Monday. I asked if it was likely to work on the awkward tumour as it hadn't really done so before, and he said there's no reason why not. So we are remaining hopeful, and I hope you do too. The waiting is awful, and I'm so sorry you're going through this as well. 

    Can you call your oncologist and chase them up a bit? Or your nurse specialist?

    All the best, 

    Lorna

  • FormerMember
    FormerMember in reply to Lornaliz

    Thanks for the reply Lorna, 

    Sorry to hear your husband had to go through emergency surgery and chemotherapy. It must have been a bit of a shock to you both. 

    I hope your husband responds to the chemotherapy and doesn't have too many side effects.

    I will just have to cope with it the best I can. Court suggested that I ask the oncologist to give me a reduced dose of the oxaliplatin so that may help. The thought of taking all those pills again and not knowing if they will work is horrible. I just have to have faith in the team and hope it will do what it is meant to. 

    Yes I will chase them up if I don't hear back by Wednesday. They are usually very good at getting back to me.

    Best wishes 

    Lou 

  • Hi 

    I hope you get an opportunity to raise your concerns with your oncologist soon . We found being more open with them about the side effects gave them a better opportunity to make a clinical assessment of my mum’s needs . On that particular occasion they reduced her dose . On others they listened to the problem and added in more medication to deal with the side effects .

    If you give feedback from your previous experience and ask them how they would manage that going forward I am sure they would be more than happy to address them and it might give you some reassurance. One thing for sure they will have experience managing it and will give you their professional judgement. 
    They will not let you suffer if it’s within their powers to address it . Hope that gives you a bit of reassurance as it’s hard facing it again . But we learnt to speak up the second time and be more open with her team . It made a difference. 
    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • FormerMember
    FormerMember in reply to court

    Yes that is a good idea Court. I am going to write down my questions and concerns for them and make sure I have the answers before I leave. I will also tell them of all the side effects I had last time. I am feeling a bit more positive now and trying to stay strong. Just worried about my family and how it is affecting them. I saw my sister today and had a good chat with her and she said she feels really helpless but will do what she can. My niece gave me a big hug. I just have to put my trust in them really. Your mum is really an inspiration for me. Wish her well for me. 

  • So pleased to hear that . 
    I am sure you are very special to your niece . I know mine are to me !

    You sound as though you are finding your feet and I am sure they will be able to answer your concerns. More insight into it really goes remove some of the fears .

    Have a good day . Off out for a walk today too! Freedom . And a Christmas tree maybe ! 
    Court 

    Helpline Number 0808 808 0000

  • FormerMember
    FormerMember

    I am about to start chemo this week for this reason. Folfiri and cetuximab. I’ve heard it can be quite effective. If they can’t shrink it they can’t operate. Mine is inseparable from my uterus.  I’m just crossing everything that it works. If you are unsure or think other drugs might be more effective, then you could ask for a second opinion?

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks DoodleDog, 

    I really hope all goes well for you. What sort of side effects do you have from that chemo? Hope they won't be too bad for you. Yes I will ask for another opinion and decide what I should do. I presume Basingstoke decide on my chemotherapy but I am not sure. I do feel a bit in the dark really, I just want to get on with it now. It is so hard just waiting for something to happen.

  • FormerMember
    FormerMember in reply to court

    Thanks Court,

    Just waiting still, everytime the phone rings I think it is the hospital. Did you get your Christmas tree? Saw some nice ones out today. I had a good walk with my sister.