FLOT chemo exhaustion

Hi Nicky F 

My husband found his chemo cycles exhausting throughout the whole four cycles .By the third and fourth he was constantly drained  ..We were told Chemotherapy is a dehydrating treatment and to increase fluid intake accordingly….It did help to a certain extent ..The injections are supposed to be given to you in your meds pack which you bring home after every chemo cycle so they must have been forgotten the first time round ! As you know they help the body to fight infection so maybe this is why you had a bad experience the first time round ? and now you’re having them you may not experience the same as before 

We tried a bit of gentle exercise too on the days my husbands side effects kicked in after each infusion ..It helped a little too but sometimes he just had to give in to them and sleep ..To be honest He found the whole chemo experience worse than his subsequent surgery! 

Hope your situation improves soon 

regards J 

Thank you so much for your quick reply. I was told they don't automatically give the injections for the first round! I have them now though, so that's in the past and I'm literally concentrating on a day at a time. I guess it varies area to area, and between oncologists.

Thank you for sharing your husband's experience. Now I know that, I can be a bit more prepared mentally. I know we're all different, but I've found knowing what to expect makes it easier to cope. So much appreciated. More taking it easy for me then, which doesn't come easy as I was an always on the go type of person :-) 

That’s the best way to get through it ..Day by day and just go with the flow ..Some days will be harder than others but we found it passed very quickly !

Be kind  to yourself as what you’re going through is without any doubt ..Massive ! 

Take care and Good  luck with everything 

regards J 

I had FLOT before my Op. My regime was

1) Steroid tablets on Thursday, stopping on the Sunday.
2) Chemo was on a Friday.
3) Self injection Filgrastim on the Monday evening (Never had a problem with needles until I had to do it myself, then I realised I'd be a trerrible druggie! - I found Emna numbing cream to be a great help for this, completely removed my fear and anticipiation).

Monday I would crash - zero energy, unable to get up and walk more than 10 steps without severe breathlessness and almost collapsing.
This would last until about Thursday/Friday.

After the 3rd session out of fear of damaging my lungs they reduced FLOT by 20% ish. and my 4th and last session saw my able to chase the Bin men down the road with my bin on the Tuesday morning. Breathlessness almost gone but any energy expenditure would wipe me out for hours. The low energy was constant for the first week after chemo.

After this, I understand my tumour went from 12cm to 7cm. 

Post op chemo was worse but you get through it. I would say the only thing I worried about was lung damage. The zero energy was expected and to some degree welcomed as I saw it as a sign that the chemo was doing it's thing. Good luck with your treatment - I hope it goes well.

NickyF said:

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Thank you for the support, much appreciated. I know I have to go through it, and thought I was prepared, but phew... it is indeed hard work. Just a blip day I think, because I was expecting to feel better. Luckily I have a few sit down hobbies, and at least feel like doing those.

Thank you for sharing your experience. Luckily I'm not breathless when I walk my 10 steps (totally agree, that feels about my limit at times), it's just fatigue and weakness on another level. My regime is the same as yours with the steroids and days, and I am so, so lucky in this awful world to be classed as curative. My surgeon was brutally honest and said it would be the toughest few months of my life, but I already have my post op appointment waiting for just after Christmas, and by then the nightmare should be mostly over and I can focus on getting fitter. Right now I'd be happy to walk to the loo without feeling like I'm going to keel over lol. It seems the chemo might be the toughest part for some, so I'll just carry on carrying on, and looking forward with positivity. Thank you - your reply has helped me stop worrying so much.

Any questions please feel free to quiz me. Hopefully the following helps.

I had the Op on Feb 22. I was very hesitant to have it, hoping to find that proton beam therapy, or other chemo might avoid it. I was deemed curative but the stage 4, 12cm tumour was <1mm from aorta so I'm starting radioterapy next week (my post op chemo finished a month ago).

Post op chemo was worse than pre op for me as I had severe constipation coupled with existing diverticulitus. But otherwise I got through it fine and have now recovered from effects of chemo. But exhausation was worse as the body had been through a lot at this point.

As for op itself, mine was fully robotic with DaVinci robot. I was probably good to be released from ICU after 4 days. I was eating ice cream and jelly after 2days, and walking next morning after op. Walking proved to be easy with no problems - I could have kept going far more than they needed to see. When transferred to general ward I was fetching coffee for a chap who had his op a few days before, his wasn't fully robotic, and his mobility and recovery wasn't as good. I had zero complications from the op, no swallowing issues. My main issues today are getting used to portion size, and reducing sugar intake to avoid "dumping syndrome" - without these issues I'm basically as close to pre cancer condition as I could reasonably excpect. I've lost a LOT of muscle mass so I'm looking forward to getting to the gym after radiotherapy finishes. A normal life seems very possibly and likely right now - something I didn't expect before the op (my main fear was not being able to be active or go scuba diving again but today it seems likely I'll be able to resume those activiites).

It seems there is a light at the end of the tunnel! I wish you well and good luck.

That is fantastic to hear! Thank you! May I ask, was it Southampton you had your op? Mine will be robotic, depending on which surgeon does it, but both use keyhole. They seem an excellent hub there for this type of cancer, so I feel very reassured by the op side of things. 

I'm experiencing a lot of acid reflux just lately, that didn't bother me before, and the Omeprazole doesn't seem to be helping. I sleep with a big wedge pillow though, which certainly helps at night, but the 'fizzy feeling' is most unpleasant. I seem to have good and bad days with swallowing too, so just go with whatever is happening on the day.

I am also looking forward to getting back in the gym! Never thought I'd say that, but just before my cancer diagnosis I'd had 2 hip replacements in 18 months, and had literally just started in the gym to get my fitness back after those... then this hit! You couldn't make it up. I'm determined though, and have a raging positivity inside me to get over all this and enjoy my former active life again. That's my motivation. I'm really buoyed up again, reading your experience... thank you. I wish you continued fitness and good luck too.

My husband’s surgery was part robotic too  ( two part procedure) ..He had his at the Salford Royal Hospital ..We were  told it’s the biggest op they do there and only second to transplant  surgery countrywide  ..He was out of CCU in four days and home at eight days ..It’s absolutely marvellous how they can carry out such major surgery in this way ..His surgical recovery has been slow but steady ...

He too found the post surgery chemo harder to deal with ..His was halted after two sessions as he had a nasty lung infection during the second cycle as well as problems with his mobility….so  he and his oncologist took this as a sign that enough was enough and settled for two …We’re now realising this was a wise decision as his leg joints are still affected five months on and he’s just having tests to see if it’s arthritis brought on by the chemo ..He has been assured it’s treatment related and nothing else .

Ironically we’ve since found out that he may not have needed the adjuvant chemo which caused him so many issues as his pathology results proved his OC was less advanced as originally assessed and the first two stages of treatment probably sufficient in his case .

From his experience there were so many twists and turns from the beginning but thankfully he’s on a positive path now 

Hope you can resume your normal activities soon ..Onwards and Upwards ! 

regards J 

Mine was Royal Surrey in Guildford - I don't think I could have expected or asked for better treatment.Fully robotic certainly seems the way to go. I was told I was the fifth person to have it. My only issue was an allergy to the surgical glue, a minor inconvenience.

I've seen ops recorded from Southampton on youtube, they certainly seem to be on the ball with it!

My acid reflux was, I believe the cause of my problems. But was short lived before the diagnosis. Post op it was bad but that was my fault for not accumalating the omeprazole - they gave me another prazole drug which I can't remember the name of but seemed to suit be better. I'll find the packet and reply with it here when I do.


Glad to hear you feel more positive, I was dreading the op - a permannent solution, so I can understand totally the doubts!