Dad saying no to post op chemo.

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Hi all,

My Dad is 7 weeks post op and had 4 cycles of FLOT chemo prior to that. Today we had a follow up appointment with the oncologist. He re-affirmed that the results of the biopsy taken during surgery have shown no further cancer (as sure as they can be!) and that things right now look very good. The pre op chemo did a great job and reduced the tumor about 80%. Surgery did the rest. It's absolutely fantastic news to hear and we are thrilled.

Obviously the oncologist got on to the topic of post op chemo and how dad would feel about having more. We talked about side effects and he explained that chemo this time around would be tougher and the side effects would very likely last longer (months!) and could be worse. Dad suffered terribly with loss of taste the first time and it put him off eating. At this point he has a jej feed tube but he's worried that he would likely not eat much for a longer time. His weight is an ongoing issue currently and we still finding a balance between eating orally and night feeds.

Dad's gut reaction was to say no to more chemo as he now feels he just wants to get on with his life and focus on getting fitter again after the surgery. I totally understand this but there's a part of me wondering if he could maybe do a couple of cycles (to give him the ultimate chance). I know it has to be dad's decision.  I just don't think it's an easy decision to make as I know how his 4th cycle last time floored him. I realise more chemo could help reduce the cancer coming back but dad worries the nerve damage he suffered could become worse and even permanent. The oncologist has booked the chemo date (October time) but says dad can let him know if he decides not to go ahead. He has a few weeks to fully think about it. He also said he would reduce the dosage if dad decided to start chemo.

I just wondered what other people decided to do after surgery? Did you go for more chemo or decide to stop and what influenced your decision? It's a real personal choice and suppose it depends how the pre op chemo went. The oncologist also told us that about 50% don't opt for more chemo, so it's very split down the middle! Not an easy decision!

  • It is a dilemma. My chemo was also very successful at reducing the size of the tumour. My Oncologist said that there was no statistical proof that post-operative FLOT improved outcome and that some centres no longer offered it. He advised it but gave me the choice. 

    After the operation (at Newcastle RVI which I think is where your dad had his?) I showed the Oncologist where I had lost feeling on my feet and he just said, yes and it may get worse and even permanent. I chose to do more Chemo. It was worse than the first time - during each cycle I went lower than before into tiredness and exhaustion. But I felt that the real difference was psychological - I had gone through the hard bit of Chemo then surgery and I was tired of it. By the time of the fourth cycle I was almost ready to say stop it. When I had a tooth infection I was glad and never did the fourth cycle.

    I did the second course of Chemo because I wanted to do everything I could to avoid it ever coming back. After what I had been through then another 8+ weeks didn't appear to make much difference with me. I now think I should have said no to the fourth cycle even before my tooth infection.

    By the way, all my nerve damage has gone away. Eating is a little awkward but I am not losing weight and getting lots of exercise.

  • Thanks for sharing your experience DaveHome. Can I ask how long ago you went through this? I hope things are still going positively for you. We live in Sunderland, so dad was treated for chemo at the Phoenix Unit there and had his surgery at the RVI. Were you similar? You may have shared similar doctors.

    It certainly is a dilemma though. It was bizarre because dad's enhanced recovery nurse Toby rang him only yesterday ( he'd looked at the oncologists notes) I got the impression that he was trying to make dad see the benefits of having the chemo. I spoke with him too and he explained that Dad's results look so good and the pre op chemo had done its job very well, so why stop now. I get the point he was trying to make and I definitely think it's made dad think more about it. 

    Dad is now saying he may try 2 cycles. He got a call from the phoenix unit to say his dates are booked in and that Dr Bradshaw (oncologist) has reduced the dossge by 25%. I think all this is making dad want to give it a go. He can take each cycle as it comes, then see how he feels. Even if only managed 1, I suppose it's better than none?

    Can I ask, did you feel the effects of the 1st post op cycle straight away? I know dad's pre op chemo took a while to kick in ( more like 3rd, and 4th just floored him) so I'm a little concerned just how quickly everything might hit this time around. Obviously the side effects are worrying too, especially loss of taste. Did you suffer with that at all?

  • Hi CMJ78

    I had the operation one year ago yesterday. Dr Bradshaw was my Oncologist and Mr Phillips the surgeon (Toby was the Ward Nurse then). I also had encouraging results from the pre-op chemo and histology of the removed lymph nodes.

    Checking back, I think that the Chemo hit me hard from cycle 1 - I missed the Cardiff game at the SOL 4 days later because I couldn't get out of bed - the only home game I missed during the whole process. My taste buds have changed but at the time of the Chemo I was enjoying having solid food for the first time in months - I was only using the JEJ tube for a 500ml feed each night. 

    Each case is different, your Dad clearly has more problems with eating than I had. Have you got Fortisip protein drinks? I used those throughout along with loads of cheese, ice cream and chocolate.

    Good luck to your Dad.I hope he feels as good as I do in a years time

  • Hi CMJ78

    My husband is 10 weeks post op (at Liverpool) so is just ahead of your Dad (I think he replied to one of your earlier posts when your Dad was struggling with the pre op chemo). Like your Dad, he struggled with the pre op chemo but got there, and the op was a success; we too had the great news that the cancer has gone. He had no eating problems after the op and was feeling good, building up strength and putting on weight.

    Like DaveHome, he decided to throw everything at it, so went ahead with the post op chemo, although was very concerned about getting side effects again. He's 76, and whilst fit, the pre op chemo was hard.

    He's 10 days into his 1st cycle of post op chemo and it's been worse than the pre op cycles. The chemo induced diarrhoea was so much worse this time round - to the point where he was admitted to hospital. They also found that his white blood cell count was next to nothing and he has an infection. He's been in hospital for three days now and is improving with antibiotics.

    We've been told that when he's discharged (hopefully over the weekend) he'll then have a meeting with the oncologist to talk about whether to continue with reduced dose - or at all. Our specialist nurse said that a large proportion of people only get as far as 1 or 2 cycles - and maybe that will be our situation.....

    It's such a hard decision, and I can fully understand your Dad's hesitance, but I also appreciate everyone has a different experience.

    Best wishes to you and your Dad.

  • I've mentioned about fortisip drinks but I get the impression the dietician prefers dad get his nutrition from food. That's easier said than done at the moment, so think I will be enquiring about that. Eating is still a big learning curve for dad. Bread and pastry type foods are proving difficult, we're finding out now. He feels full straight away, so we need to look at altering his diet to suit him better. Only glad he has the jej tube to rely on for now. Am sure that will be needed more once chemo starts.

    What a small world, my dad's surgeon was Mr Phillips (now a professor) and Dr Bradshaw being your oncologist too. It's so great that you and my dad have had very similar results post op as well. They really are marvellous people.

    Dad is considering going to the upper GI cancer support group later this month at the Freeman hospital. I said he might benefit from speaking to others and share their experiences. Was that something you did while you were going through your treatment? Never been to one before, but it could be helpful to us.

  • Hi 

    My husband completed two of the post surgery chemo cycles .It was stopped  due to him having an adverse reaction during the second cycle and a subsequent lung infection ..He too found the adjuvant chemo harder ..(although he did find the pre op chemo tough going too)  ..The fatigue ..aching bones and other side effects seemed more severe and longer lasting post op  ..I suppose it’s because the body is weaker after the first two stages of treatment. ..

    His oncologist told him those two cycles would go a long way in reducing the risk of a recurrence…  ..Six months later he’s still experiencing lightheadedness and dizziness ..He’s just been diagnosed with moderate  osteoarthritis in his hip and knee joints too ..He didn’t have any joint issues before his treatment so it’s probably a consequence of the chemo but who knows ? 

    It’s a big decision for your Dad after all he’s been through  He’s done well through the first two stages of treatment but I’m sure at this present time he’s feeling weary with it all and just wants to be left alone to recover and rebuild his life ..It’s a gruelling process that’s for sure ! 

    Wishing him well in whatever he decides 

    regards J 

  • Hi

    it was a few years ago (9 in fact) that I decided to have post op chemo. Chemo in those days was ecx and easier than flot. I had breezed through the three pre op rounds of ecx. But on the third day of the first round of post op I was admitted to Addenbrookes (Cambridge) and kept in for 10 days which was a longer stay than for the surgery. At my next appointment with the oncologist they suggested that I’d probably had enough.

    No recurrence in nine years…3,496 days

    Counting the days, making every day count.

    Brent

  • Good to hear this BrentS ..Nine  years is fabulous Blush

    m regards J 

  • Thank you for sharing CW68. Very good news about your husbands results, its always the news you so desperately want to hear!

    I'm sorry he's been struggling with the post op chemo. Everything I've read or heard about it suggests a tougher time unfortunately. I do hope he gets out of hospital at the weekend. Perhaps he has now reached his limit?

    I've told dad to make his decision based on what is right for him, not for the doctors or me, as it will be him that will have to endure any awful side effects all over again. He seems keen to try for 2 cycles at a reduced dosage, so we will see.

    Wishing your husband and you much positivity going forward. I wish him well to a full recovery.

  • Thanks for sharing JPM. Sounds like your husband has been through a tough time of it with the chemo. At least he managed to get through 2 cycles. I think thats pretty good going to reach that point really, after all the body has been through up to that point.

    I'd like to think dad could get through 2 cycles but even if he only manages 1, it's something. The oncologist told dad that about 50% don't take the post op chemo, so it's very divided. You can understand why!