FLOT Chemotherapy

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Hello All

I only joined this forum a week or so ago and have been amazed to read so many stories and found people so supportive. Its really helped me to see others are sharing the  in the challenges we are all going through.

Subject to a final test result this week I am scheduled to start Chemotherapy on Friday. I am having the FLOT version. I have read some pretty scary posts on here and other places about the impact of Chemo and I am trying to be ready for what is going to be a tough period.

Does anyone have any good advice out there that will help my journey be a little easier. What have you found to be the do's and donts, how did you manage the impact and how long did the worst impacts after each treatment last for you.

Any advice welcome as although I cant wait to finally get started on fighting this thing I am very apprehensive!!!

Mike 

  • Hi Mike L

    Sorry to hear you’re going through this ..it is indeed a tough road ..However everyone is different and no individual experience is the same .

    Regarding the FLOT Chemo ..My husband was told to keep as hydrated as possible and stay as active as possible after each cycle ..His pre surgery treatment pattern was FLOT every two weeks ( eight weeks in total ) Commencing on a Monday via his Hickman line fitted in his chest   , usually lasting  between four -five hours at the hospital and then he would return home with chemo pod attached to his Hickman Line which was then removed 24 hours later at home by the Community Nurse ..Wednesday he would start to feel the side effects (this can vary with each individual) and by Saturday he was usually over the worst ..I must add my husband found the chemo far worse than the surgery but he got through it without any complications at the time. 
    He saw the oncologist three times at clinic throughout the eight weeks and spoke to him weekly by telephone , just to check there wasn’t any complications and everything was going according plan . We were also given an emergency number to phone if necessary . There can be a gradual build up of side effects as each session completes but you will be given meds to bring home with you and if taken according to the advice given they actually do help ..Unfortunately they can’t give you anything for the fatigue so sometimes my husband just gave in to it and slept ..
    You will find your own way of coping and you’ll have lots of support so don’t worry .

    I Sincerely hope all goes well for you .

    regards J 

  • Hi Mike and welcome. FLOT is tough. No point in pretending otherwise. There are many side effects you may suffer from (I think there were nearly 30 listed in the booklet I was given before starting mine) but there’ll probably only be a small number you will suffer from. For me, it was fatigue, diarrhoea and loss of appetite (mainly due to my tastebuds being wrecked). I found that the recovery time increased as I went through the cycles. After the first cycle, I had about 4 or 5 days of feeling poorly but, by the time it came to cycle 4, it was nearly 3 weeks before I felt better. My advice would be to make sure you have all the medication you need (anti-nausea tablets, anti-diarrhoea tablets, paracetamol, etc) and to just be prepared to feel tired a lot of the time and just rest when you need to. I found this hard as I’m used to be pretty active but afternoon naps soon became part of my daily schedule. Having a good sippprt team around you is invaluable. I completed my FLOT at the end of January and had my orsophagectomy surgery on 29th Feb. Recovery from that is slow as well. I wish you well on your journey….

  • Mike 

    Chemo reactions  vary from person to person . You already  done the right thing by reaching out on this forum . 

    I had FLOT over 8 week period in 2023 then had my Stomach  removed in August  2023. Recovery  slow and steady 

    Best thing to do is listen  to your body and ask your team any questions or worries  you have . 

    DON'T GOOGLE anything about your situation 

    All the best 

    Nick

    Nic nac

  • Hi Mike,

    I remember this stage well - the mixture of feeling desperate to get started and very anxious. As the others have said everyone's a bit different in how their bodies respond.  By the end of the first cycle my hair fell out. I just cut off the rest and bought some hats. The first two cycles were okay  for me...mostly my anxiety was high. The supportive meds really helped especially the steroids. They will give you a schedule of when to take the meds for the first few days and then you take them as needed. I never let the nausea get bad before taking it. I went walking and took part in the pre-surgery exercise programme that the physios ran at Royal Surrey Hospital for most of the programme.  The effects were cumulative so the fatigue really did get bad by the 3rd and 4th cycles. I spent a lot of time watching TV. I didn't put any pressure on myself. I learnt patience. Your energy will come back even if doesn't feel like it will - it eventually does.

    Take care. I'm sorry you're on this journey. You'll find lots of support on this group.

    Suzy.

  • Hello Suzy - thank you for your message thats really helpful. I am being treated at the Royal Surrey as well. I was originally under the care of Mr Shaun Preston but now have been move to Mr Asassi-Ghani. They will be calling me today for the result from my bone biopsy which either means palliative care if its spread or back to the original plan that you seemed to have gone on. I have never felt so nervous!

    Hopefully I will get onto the Chemo and will definitely follow your advice!

    Please keep your fingers crossed for me today!

    Take Care 

    Mike

  • Thanks Nick. I remember when I was first diagnosed going on a google journey that scared the life out of me! I have stayed away from it ever since.

    Thank you for your advice and I wish you well with your ongoing treatment

    Mike

  • Thanks Cool Blue thats so helpful and I know I have to be realistic and know there are some tough times ahead. 

    Everything hinges on a bone biopsy result which I get later today which will show whether the cancer has spread. If it has according to the consultant the prognosis isnt so great whereas if it hasnt I hope to start Chemo on Friday. I have everything crossed as you can imagine!

    I hope you are getting on OK after your surgery and I am sure at the moment you must be in a lot of pain and discomfort. Sending you lots of positive vibes for your recovery.

    Thanks Again

    Mike  

  • Thanks J thats really helpful advice and I really hope your husband is getting on OK.

    The treatment plan the Royal Surrey have set out sounds identical to your husbands. Its all subject to a bone biopsy they have taken as they are worried the cancer has spread to my hip. If it has the prognosis isnt so great. If not I hope to start Chemo on Friday with picc line being fitted on Thursday. I get the result later today and cant believe how nervous I am! 

    Wishing you and your husband all the best for his ongoing treatment and thanks again for the advice which I will definitely take on board if I get good news today

    Mike

  • Good Luck today .
    regards J 

  • Hi Mike 

    This journey is horrible- the uncertainty is terrible. Nima Abbassi-Ghadi is my surgeon and I couldn't recommend him enough. It all ferls more manageable once you have a plan. Do see about the physios programme for pre surgery.i found it really helpful. They are kind. Near the end of chemo I couldn't always take part but I still appreciated them checking in.

    I met some amazing people on immunotherapy living their lives with cancer. Also Nima appears to be up on the latest research so do ask him about any trials if it turns out its spread. Hopefully it hasn't.  If surgery and chemo is your path, my advice is to look beyond it. The side effects, etc will pass even if it feels like it won't.  

    Let us know how you get on. 

    Take care,

    Suzy