Post op FLOT

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Hi everyone 

got my appointment today with oncologist to see what the plan is going forward - had two post op flot now - absolutely knocked me for six both times with side effects. Neuropathy in hands and feet still not subsided, sickness was unbearable, cold and hot shivers and complete exhaustion. Not sure my body can take anymore of it. Feels like I’m between a rock and a hard place in making the right decision. Far to many what if questions circling round my head.

advice please is so very much needed 

Sarah x

  • Hi Sarah please let us know what they say ! I can’t give you advice but a lot of people have been unable to complete all four cycles !! Tricia xx

  • Hi Tricia 

    I will update later, not there till later this afternoon 

    Sarah x

  • Hi Sarah,

    Post-op FLOT is very hard on an already bruised and damaged body. I managed three (at a reduced strength of 75%) before calling it a day. I think very few people manage 4 sessions and even fewer at 100% strength. My pathology was good so my oncologist was happy enough for me to stop after 3. If there had been concerns about margins or lymph nodes, then I would have struggled through all 4 sessions. I suppose your own pathology might help influence your own decision?

    Best wishes,

    CB

  • Hi CB

    thanks for your reply - because my margins are so narrow I’m apparently high risk - just been told that by the upper GI nurse specialist who eventually got a reply from the oncologist this morning. She is going to come to the meeting with me this afternoon. Looks like I’m going to have to keep going but hopefully they may cut the strength -

    will update later 

    Sarah x

  • Hi everyone,

    so I had my appointment with the oncologist yesterday, who in no uncertain terms told me I needed to complete my cycles of post op FLot as I’m high risk of it returning. 
    not the best of news to hear. Basically I’ve got survive the next two years when the possibility of this dreaded disease is at it’s highest to return. I won’t be able to say I’m cancer free for five years which if I’m lucky enough will make me 60! 
    to say I cried a lot would be a bit of an understatement but those big girl pants are pulled up even tighter and I’ll keep battling the fight.

    ive had my chemo today and that means ive one left to do. Roll on June when hopefully the chemo will be out my system and we can start doing ‘normal’ life things again and my hair might actually have grown back for Christmas lol 

    sarah x

  • I’m so sorry the choice was pretty much made for you and I hope that you are able to soldier on with the horrible side effects. My husband will get his histology results in a couple of weeks and wants to complete post op FLOT if he can. Pre op FLOT made him so ill that I dread to think of what’s coming. Thinking of you and sending every good wish.

    Geraldine x

  • Hi Geraldine

    pre op flot was bad enough - but unfortunately post op is so much worse. I think because we are so weak from surgery and still recovering from that to be honest. 
    yes, I definitely think the decision was made for me, but in this uncertain journey we find ourselves in, I guess you have to go with what they say to some degree.

    just want to get back to being me in whatever form that takes now - 

    roll back to last September and I would never have imagined that we have got to where we are now, so each new day is and has to be a blessing 

    much love 

    Sarah x

  • Totally agree with every word Thumbsup Making the most of every good day. 

    so grateful my husband had the option of surgery when so many sadly have not. All we can do is be as informed as possible when being advised by our medical teams and battle on. 
    sending love

    G xx

  • Sorry to hear that you have to soldier on ! But unfortunately it sounds like the best option for a cure ! We have to be guided by what they tell us! I’m just starting to feel better after my surgery and the thought of having to have chemo again is not something I’m looking forward to but it is what it is ! At least you have already done  2 and with today 3 so almost there ! Thanks for letting us know take care Tricia xx

  • Hi Sarah 

    I think you’ve made the right choice (albeit urged on by your oncologist)  .You’ve come this far , so as long as there’s no physical reason why you can’t carry on , then go for it ! .. Easy for me to say of course but if you didn’t try would you have any regrets going off what you know now ?

    My husband wanted to complete the four post surgery cycles however hard they were .He said he wanted to be happy in his mind that he’d thrown everything at it to give himself a chance of a cancer free future .However his body told him enough was enough in the form of a pretty nasty lung infection after the second cycle and , it was agreed between him and his oncologist that to carry on would be detrimental to his long term recovery .He’s now just over two years post treatment and alls looking good up to now 

    I used to do a countdown for my husband throughout all his chemo .He said it really helped to keep him focussed 

    You’ve got this Sarah ! 
    One more down ! One more to go ! You can do this ! Heart

    Sending you strength and focus 

    J x

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