Dad's fatigue after 4th FLOT cycle

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Hi

My dad has completed his 4th pre-op FLOT cycle just over a week ago. However, now that he's had a lot of chemo, it's really hit him like a sledgehammer in terms of fatigue, and feeling weak. It's left him with no taste in food, this has been alot worse since his 4th cycle. So his appetite had been low. I'm trying to keep him eating to keep up his strength and spoken to the nurses. He's just says everything tastes awful. He has to treat his food like a medicine, so I tell him.

He's now waiting for his operation which he's now got a date for (July 18th) so I'm even more worried as this is the time that he should be trying to keep his fitness/strength up. Its so difficult as he's so fatigued, he says his legs are weak (the heat doesn't help either!) He had a CT scan last week and nurse rang yesterday to say the chemo helped to reduce the tumor, which is very positive news at this time!

Its so hard to see him going through this but I want him to have the strength to get through the operation which is only just over 4 weeks away. I did think the date would be a little after then (but not complaining!) I only hope he starts to get over the lack of taste. I was trying to get him out walking but lately he says he doesn't have much energy to walk far, but I think a little is better than nothing. He still has his hickman line in, which the docs prefer to keep in as dad wanted it taking out after chemo ( it also prevents him playing golf) but he's due to have more chemo after op.

Sorry for long message, but has anyone else experienced all this after chemo? Dad's just not in a good place at the moment, really getting him (and me) down...

  • I'm sorry your husband's follow up checks weren't  carried out as they should have been. That's far from satisfactory. I can imagine you must feel in limbo when the docs haven't confirmed if he is in the clear. The whole process is worrying enough without adding to it.

    However, it sounds like he is doing well and long may that continue. Thanks for sharing yours and your husband's experiences. It's so helpful to know what potentially lies ahead for my dad. We have a meeting next Thurs with his care team and surgeon to discuss everything pre surgery and for dad to have bloods, ECG etc. I'll make sure to take a long list of questions too! My dad has an appointment in place for September with his oncologist. I'm assuming that'll be before he starts his post op chemo?

    Thanks for your well wishes, I wish you and your husband all the best as he continues on his road to recovery x

  • Hello again. I do hope all is going well for your dad's upcoming operation. Mine was brought forward to 26th June rather unexpectedly and I am now back at home recuperating after great care in Royal Liverpool. In my case I found it a tough operation (although little to compare it with!) and there are a lot of aches and pains but well managed with the pain relief given and gratefully received. It is important I think not to try to be too brave about this as the reduced pain allows for better recovery enabling you to cough and so on which is needed. Sleep is not easy (especially in the critical care unit with all the machinery) and this was difficult but I was surprised how quickly it got better.

    Due to bed availability I never got to the general ward and was discharged direct from the critical care ward after assessment of walking, stairs etc. They get you up on day one which is quite tough but vital I think to get you towards recovery. I am lucky I think as found eating no problem although of course small portions and am able to move about the house and garden again although with discomfort and pain killers. Only problem from wounds is leaking area where the chest drain was removed which I understand may take some weeks to resolve. Staples etc all removed day 10 by local nurse.

    While it is right to be apprehensive about what is a very big operation I hope your dad will find he is soon able to look forward to recovery as it does improve quite quickly and the level of care and the wonderful teams working for your recovery are so encouraging. Good luck and hope it all goes well

  • Hello again RobertV, thank you for coming back with your update. I hope you're starting to feel a little better, each day at a time! It's helpful to know what lies ahead. I must admit I'm starting to worry more as the surgery draws nearer. We met with dad's team last week...surgeon, anaesthetist etc and they talked through everything. I think dad's main shock/concern was when they told him how much of the oesophagus they'll need to remove (they said around two thirds approx!) Which sounds a lot! But, they obviously know what they need to do...The surgeon also said about building back up to eating solid foods, and recommended about 3-4 weeks which sounds quite quick. Obviously dad will have a jej feeding tube into his stomach initially (which he's not thrilled about) but needs must until his weight stabilises.

    However, we left feeling a little more positive in terms of what to expect, and like you say, they will have dad up and moving about the day after his surgery. They said a minimum of 7-10 days in hospital depending on how things go. Let's hope it's not any longer. I know dad is worried deep down, but his main response has been 'we just have to get on with it and get it done' so trying to be positive. Dad is also due to have post op chemo aswell. Will you be having more chemo too?

    Can I ask...is there anything you have at home to help you with your recovery such as special pillows as I think dad may have to sleep in a raised position rather than lying flat afterwards. It's all going to be a very new normal. But any tips or recommendations you have are gratefully received! Best of luck to you as you continue your recovery. Take care.

  • Hello Again

    I found the conversations with the surgeon and anaesthetist very helpful and frank and informative. Since you are warned, rightly, about all the possible side effects and what could go wrong it is rather intimidating but hopefully most avoid these. With regard to food I was quite surprised to be offered jelly, ice cream and soup after 2 or three days and then on to the GI menu - small portions of pretty much anything softish like shepherds pie, lasagne, tuna pasta fish pie and so on which was really good and lifted the spirits. I do realise how lucky I am to have retained my appetite as some are not so fortunate but it is much better so far than I had expected. Just been sitting in the garden with tea and chocolate biscuits which feels pretty good!. Again I am lucky not needing the feeding tube which I had expected.

    I think the time in hospital is unlikely to be less than 9-10 days from my experience which was quite quick and is a great opportunity to recover as much strength as possible and learn about the pain relief which I found really important. The need to cough and the pain doing this are not fun but ease day by day. Encouraging as they gradually remove all the tubes and wires. Post op chemo will be assessed at my next meeting in 2 weeks when they have the results of examining the tumour. I realise everything depends on the severity of it. I really do not want more chemo which I disliked more than the operation I think!

    At home it has been ok with the huge help of my wife. Been pretty mobile can do stairs ok. Sleeping needs to be pretty upright with pillows to support but I got used to this in hospital so has not been too bad. Getting up in the night and in morning is harder as the pain relief wears off and movement is painful.

    I do hope your dads journey goes well we are all different and I do feel very fortunate to be recovering pretty well and hope he follows the same path. Minor problems with some leakage from old drain site, swollen feet and of course the chest pains but all should decrease in time. At 76 I am sure my recovery will be slower than for a younger guy but ok so far.

    Good luck sure he will be OK

  • Hi, I'm sorry your dad is feeling so low. I have experienced loss of taste too, and a very bad case of oral thrush that Nystatin coul not completely eradicate (waiting for stronger stuff to arrive). 

    You could contact your help line / consultant as it could be oral thrush? Although, your dad would know something is wrong. If he tells you. His tongue should be white and coated. He could feel a sensation of burning (that's how it feels, and it feels swollen, and so are my lips). My 4th cycle has been delayed by a week because I was too tired and unwell after cycle 3. It can get you down pretty bad. 

    It could be something else too.  It's better to check and get advice. 

    I hope your dad will feel better soon so that you can have some rest too.

    Take care

  • Hi, my husband had his operation 7 weeks ago. The hospital sent him for Pre-hab before the operation so that he could improve his fitness. It helped his recovery as he was in surgery for over 11 and a half hours but was still out of hospital after 9 days. The first few days after the op while they are in ICU will be hard for you both and it may look like they will never be able to recover, but it is amazing how they bounce back. Fatigue after the surgery is a big thing, but a few more steps every day really pays off. He is due to start his next 4 rounds of chemo next week. He was T3 N3 M0, after the operation they re-staged him to T4a N2 M0. If the doctors don’t offer it, I would ask about pre-hab, there have been studies to show patients who have it, have improved outcomes post-surgery.