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...

  • Hi the chemo is hard so it is understandable how he is feeling.

    With regard the food tasting awful he may have oral thrush, I did and it really made eating and drinking harder as everything tastes awful. The cancer helpline or GP should be able to help. 

    I read several articles that said some exercise during and after chemo can really help, so when I could manage it I got out walking if it was just round the block.

    The only other thing I would say is that the effects of the chemo will lessen and so hopefully he will start to feel a bit better soon. 

    It’s great news the chemo has helped that’s really positive.  I know it’s easy to say but don’t be too hard on yourself, caring for someone with cancer is really hard and this will be a long journey so look after you and try not to let it get you down but if it does reach out for help. 

    Take care 

  • Thanks for the advice JacPop. He is managing to get out each day for a little bit, but then feels tired later, especially his legs.  The lack of taste has been hard on him but he has pastilles to suck and has been drinking pineapple juice to try and stimulate his saliva glands. It's bizarre as he says he has some taste first thing on a morning, then it seems to fade as the day goes on. He has some taste of stronger tasting foods, but it can be very hit and miss. Thank you for advising x

  • I completed my FLOT cycle a few weeks ago and now waiting for the op on 3rd July. At 76 I too found the treatment pretty brutal and it was hard to exercise and loss of taste was tedious. However the good news is it does get better and although it needs an effort to go for a walk and take exercise I did feel better afterwards and was gradually able to do more. It is important to keep at it as we all know. Now enjoying the last weeks of eating good meals and travelling a little as sense of taste returned and feeling fine again so making the most of it! Good luck with your treatment.

  • Thank you for your response RobertV. I wish you well for your upcoming surgery and beyond. It sounds like you've been on a very similar pathway to my dad (and time wise too) I know dad agrees that the chemo is brutal. He got up to the 3rd cycle without too many harsh side effects but I guess by the 4th round your body has taken alot of chemo at that point and you start to feel the real full effects.

    Still, I've tried to relay to dad that it's all for the best cause, with the aim to cure and beat the cancer. I always try to keep that at the front of our minds. Dad has about 4 weeks until surgery, with a pre assessment with his care team next week, so I will do my utmost to get him out walking!!

    Thanks again and best of luck to you!

  • HI

    My partner had his surgery May 22, he was very fit beforehand luckily enough always at the gym.  the chemo was ok the first few the 4th one floored him, he couldnt even go a walk at all.  After the op I tried to get him moving more, then chemo hit again, by the 3rd one he cudnt get out of bed and the 4th one they had to give him a lower dose.  however, on the upside not long after it was all over he was back at the gym, not doing as much as before but still attending and trying bit by bit.  hes 10 months or so after it all ended and he goes maybe 4 time s a week 5 if he feels ok.  Just to give a little hope to your dad its possible to get back to golf afterwards, however it might take a we while and some patience.  I wish you all the best Slight smile

  • Thanks for sharing SamanthaN and for your kind words. Your partners story sounds similar to dad's. We have to try to trust the process, but it's hard. I know dad can't wait to go golfing again though. That'll be his goal after surgery I guess (though may take a while!)

    It does help to know what other people have gone/are going through and I take comfort from people sharing their stories, like you, so thank you!

  • Hi ..Sorry to hear your Dad (and you) are not in a good place at the moment ..It’s a hard process to go through without any doubt …Great to hear though that the chemo has reduced your Dad’s cancer .and well done to him for getting through it as it certainly is brutal for some  ..My husband said he felt the effects worse after the third and fourth cycle ..His legs were weak by the end of the fourth one and it floored him for a good two weeks afterwards ….To be honest his leg joints have never recovered 100% back to how they were before ..He now walks with the aid of a walking stick ..but we hope they’ll improve as time goes on …He also had the food tasting awful issue ..I think he compared it to everything tasting like soggy cardboard but it did improve after a month or so …The date for your Dad’s surgery does seem very soon after his last chemo session ..my husbands was around six weeks afterwards and I thought that was a bit too soon …but he came through the surgery with no complications and was home in eight days ..Obviously weak as you would expect with any major surgery but his recovery has been slow but steady over the past six months .., I’m sure if there’s any issues regarding your Dad’s overall fitness levels prior to the surgery his surgeon will discuss it with you both and a solution will be found ..I would say trust your Dad’s medical team ..they know exactly what they’re doing and don’t take risks with anyone

    This time next week your Dad may feel better ..you never know …We found the whole treatment process so up and down and unpredictable…

    My husbands Hickman line was removed before he had his surgery and he had a new one fitted afterwards for his adjuvant chemo which started  roughly six weeks post surgery but things can vary from one hospital to another .

    We are now six months post surgery and three months post adjuvant chemo ..The journey still continues but you learn to adapt to your new normal and it sure is a relief when treatment is complete  ….Stay strong ….You’re doing a great job in supporting your Dad ..

    Sending your Dad and you strength and positivity as you go through this next stage of treatment 

    regards J 

  • Its a long hard road for you both but there is hope to get back to the life he had before, it probably wont be exactly the same but hope that he can get back to better health and golf again.  My partner has to eat then wait an hour or 2 before he can go to the gym or out anywhere but its just a process he is learning to adjust to. I hope the surgery goes well and just remember that he was fit beforehand which is a big big plus for surgery and better recovery x

  • Thanks for sharing JPM, it sounds like there's alot of similarities between what your husband went through and my dad's current situation. I'm glad your husband gor through surgery and is finding his way back to a new normal. Does your husband have follow ups now that he's completed his post op chemo? 

    I long for and pray for the day my dad comes through all of his treatment  and hears the words 'you're cured'. That is my sole wish. There's a long road ahead before that though, but it helps to think positive!

  • Hi ..Regarding the surgery we were told there would be be four monitoring appointments every three months over the first year post surgery either by telephone or at the hospital  ..Two in the second year and then one annually for the remaining three years out of the five year timescale but we’ve found the after care practically non existent and six months after the fact he hasn’t had one appointment yet  ..However  after a phone call to my husband’s  specialist nurse yesterday regarding a few issues ..I found out there had been errors made in scheduling his post treatment monitoring appointments ..They have apologised and the errors have been registered and are being looked into ..He now has a face to face appointment with his surgeon in July and a meeting is being held on Tuesday to discuss the removal of his JEJ tube which should have been removed in February but wasn’t ! 

    Regarding the chemo ..Once my husband finished his post surgery chemo he was handed back over to his surgical team and hasn’t any follow up oncology appointments scheduled …He has never been told he is cured or given the all clear ..He was just told everything looked positive ..the post surgery chemo he had would go a long way in reducing the risk of a recurrence and the only way they would know if the curative intent process has been successful is if the cancer doesn’t  come back within five years ! 

    So we’re left in limbo really but we don’t dwell on the fact it may come back ..We just deal with the present and don’t worry about it ..Yes staying positive does help a lot in situations like this …Regards J