Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Post operative chemo

Garyb
Posted by

Hi all,

I am now going through my first cycle of post op FLOT and in all honesty it is very tough, much tougher than pre op. 

After the surgery I was given a complete response result which was great and therefore the chemo was optional for me however this was only based on a lack of evidence collected on post op FLOT after a PCR. I decided to go for it but am now considering calling it a day.

i fully understand the reasons for completing the course but the effect it’s having on me is debilitating and without solid evidence that it’s worth it I’m really doubting that another 6 weeks of this is doable.

How did you fare with the post op chemo? 

Nothing worthwhile comes easy.
KevRover
Posted by

Hi Gary, sorry to hear you are struggling with the post-op chemo.

My own experience was very much the same, I managed only 2 and a bit of the scheduled 3 post-op chemo cycles (mine was the CEX treatment not FLOT) ; ended up in hospital twice and had severe problems walking due to pain in feet. My oncologist suggested I give it up after the second hospital referral as the op had "done it's job" and I was at risk of developing lasting side-effects at a relatively young age - I'd just turned 50. (I still get an occasional sharp pins and needles sensation in my toes to this day, 3 years later).

My advice would be to take it as far as you can but call it a day when your body can take no more.

I have no regrets at all about the early finish, still very much here and enjoying life.

Best wishes in the meantime mate,

Kev.

BrentS
Posted by

Hi Gary

good to hear that things went Ok during surgery and your immediate recovery. 

I had ecx chemo pre op which I managed pretty well without any particular side effects. I did start on three cycles post op, but just a few days into my fist cycle  I was admitted to Addenbrookes as an emergency with tachycardia and spent 10 days unable to function, but made a very sudden and complete recovery on my last day. Oncology said it would be a bad idea to restart chemo. It was only belt and braces anyway.

From what I have heard very few people make it through three cycles of post op chemo so don’t feel like a failure in any way if your body won’t tolerate it. Chemotherapy is after all a poisonous cocktail and it would be ironic to injure yourself with it.

Counting the days, making every day count.

Brent

Garyb
Posted by

Thanks Brent and Kev,

ive has all sorts of grotty side effects this time and I guess it’s about knowing when enough sis enough. Of course my family and friends want me to see it through and I don’t want to let them down however it’s hatd to convey just how tough chemo can be and maybe I’m just a little fed up with being in treatment after all it’s such a long hard road. 

Pleased you are both faring well and long may it continue. 

Regards

Nothing worthwhile comes easy.
Lou1972
Posted by

Hi Gary

I’m from the stomach cancer group but I know our treatment is similar although I think you get the award for the tougher surgery. I had a total gastrectomy on 2nd January and had my first post op cycle of FLOT on 5th March. 

Ilike you it has hit me hard, and I had considered calling it a day but I’m giving cycle 2 a go tomorrow after a weeks delay, they’ve reduced my dose to 80% of all drugs and I’ve been prescribed an extra anti sickness to take along with my others, it’s called Aprepitant, I’m hoping it will work it’s magic. I was admitted to hospital twice, once for fluids and anti sickness meds and secondly I became neutropenic with signs of an infection, luckily I was only in for 24 hours and sent home with antibiotics which made me feel quite ill along with terrible fatigue. 

Like you my surgery was successful, great margins, good chemo response no nodes involved, my oncologist said this chemo is the cherry on the cake but I can stop at any time, he reminded me it’s poison and bit to be played with so I’m to listen to my body. To be honest I’m really anxious about tomorrow, but I feel it is right to give it another go, again my family are hoping I’m able to complete all rounds. I’m 46 with 2 kids and I feel like I need to give it my all for them. I do know someone else who said her first post op chemo was the worst of all 8 rounds, I’m hoping it will be the same for me. I also know someone who is also having post op chemo and isn’t having a tough time, I suppose we’re all so different. 

I understand exactly how you feel, the decision has to be yours and I know how hard it is to make that decision. I was expecting it to be tough but not this tough, my oncologist said only 40% of people complete the 4 rounds and there’s no guarantees you’re doing more harm to yourself than good in the long run....it really is the hardest thing to contemplate isn’t it. 

Whatever you decide I wish you well and a full recovery, the lady I know who struggled with her post op chemo said she recovered well and went on holiday to Australia a few weeks after finishing and returned to full time work a month after her return, there is certainly a full life to be lived on the other side!

good luck & best wishes

Lou
Zappaman
Posted by

Hi Gary, I can't comment on the chemotherapy, but you must do what you think is best for you. You are the one going through the treatment so it is up to you to decide what is in your best interest. Not what family and friends want. I had a discussion with my wife and son and they agreed that it was up to me to decide what treatment options I was going to have as I was the one going through it and would have to live with the consequences. I chose not to have chemotherapy and radiotherapy prior to surgery and I am living happily with my decision 2 years and 5 months post surgery. What ever you decide you are most certainly not a failure. Good luck with whatever you decide, kind regards Frank.

Garyb
Posted by

Thankyou all for your kind responses, the support recieved on this forum is excellent and such a great help.

Lou & Frank I appreciate your advice and Lou I take my hat off to you for your bravery as you embark on your 2nd cycle and I hope you sail through it.

I will have a warts and all talk with the oncologist Thursday about long term side effects and weigh it all up, my gut feeling is that I’ll reluctantly take round 2 and probably wind it up. I don’t think I’ll be 100% sure whatever I decide but it’s a decision that feels right. After nearly a year of treatment I just want to be able to live again. 

We have a holiday booked for the 5 of us at the end of summer and I fully intend to be ready for it (although I think I’ll need new holiday clothes this year) 

Kind Regards

Nothing worthwhile comes easy.
Lou1972
Posted by

I know what you mean about wanting to live again, I was just getting on my feet after the op, hair growing again and now I feel back to square one. I think I’ll happily pull the plug if this cycle is unbearable. 

Good for you for booking your holiday, I have a few booked also and even started to buy the new wardrobe! Making memories and living for each day with our loved ones is what life is all about! 

X

Lou
Jacquiw10
Posted by

Like Lou I am in the Stomach Cancer group and have followed this thread with interest. I had a complete response from the pre surgery  chemo and had a clear pathology after surgery.  My surgeon was great and very honest with me when I discussed post surgery chemo. There were no statistics to inform how much difference it would make to the outcome.  

I had lost a stone in weight since diagnosed and found the ECX chemo hard.  It also affected my eyes and vision.  I was just recovering from the surgery and I felt that I needed good evidence to have more chemo.

The meeting with the oncologist was more difficult and he offered me more chemo. I said I was reluctant to have more as I knew it would be tough as Lou and others have said.  Were the risks worth it? He did not give me clear guidance and I felt it was because this was the standard pathway rather than specific for my situation .

I made the decision not to have more chemo.  But it was not an easy decision and I am very grateful to others on this group, who shared their experiences as it helped inform my thinking .  I have now had cancer twice and I realise I have been very lucky to have a choice.  I did not want to risk more damage to my body especially if I needed chemo again in the future.

I have returned to work after six weeks post op albeit on a phased return, working from home .  It is great to be through the last few difficult months.

I have complete admiration for those battling their way through chemo especially post op!

Jac

Life is what happens when you are making other plans!  
 
 
Lou1972
Posted by

Today didn’t go as smoothly as planned, I started to get chest tightness through the second part of the infusion so it was stopped, I saw my oncologist who said it could be a normal reaction due to the cold weather, but I’ve not had it that bad before, it could be I wasn’t recovered enough from the last one and my body has had enough, he doesn’t know. He did say that there is no great evidence that 8 full transfusions is the magic number, I could actually be doing far more harm than good. The main thing is that the tumour has been removed and anything else is a bonus he said, I’ve had 5 doses and 1 part one. 

I can have another in 2 or 3 weeks and extra precautions can be made or we can stop, he’s happy with whatever decision I make. I feel very conflicted but I will see how I recover from whatever I’ve had today before making any decisions. 

Jacqui considering your pathology report I think you are right and I hadn’t considered what if I needed more chemo in the future and being reckless now may affect it, a very good piece of information to ponder. 

Wonderful to hear you are back at work but taking it easy. How far you have come! Well done!

much love

Lou x

Lou
Garyb
Posted by

Good morning all,

Firsty Jacqui, such a difficult decision to make and well done for making a decision that feels right for you. 

Lou,

sorry to hear it didn’t go well, i think we’d all understand if you wound it up now.

I am due my 2nd dose on Monday however this first cycle so far has seen me in the hospital 3 times now for a suspected blood clot, and an infection (twice). I am now in bed completely shattered and having serious doubts about Monday. Even my wife who has been the biggest advocate of seeing it through is now telling me to stop.

Oncologist tomorrow and I hope to get more than the standard complete the course spiel.

kind regards 

Nothing worthwhile comes easy.
Lou1972
Posted by

 Thanks Gary

im not surprised  you are considering stopping, 3 hospital visits is scary and exhausting, rightly so, I’m sorry you’re still in bed. 

i hope your oncologist is a little more sympathetic tomorrow, it could be worth at least delaying treatment for a week or so firstly to give you more recovery time and secondly to make the decision if you want to carry on. I think my oncologist would like me to give up, I’m going to take each day at a time but am already definitely going to ask for a delay in the next one. 

I will be thinking of you. 

Lou

Lou
Anon613
Posted by

Hi Garyb, 

Last year I had FLOT, Ivor Lewis surgery then FLOT. My FLOT was 4 treatments every 2 weeks. I found the post surgery FLOT cycle harder than the surgery. My oncologist told me that 60% of patients fail to complete the post surgery cycle and that is the reason that FLOT was only authorised for use on the NHS in November 2017. I finished my second cycle of FLOT in December 2018. I still have several symptoms that were caused or exacerbated by my chemotherapy nearly 4 months after completion of my treatment. But these are being sorted out by various clinical departments in various hospitals. 

So why did I go for the second cycle of FLOT? I wanted to give myself the best chance of getting rid of my cancer. But the choice is yours. 

Anon613
Garyb
Posted by

Hi all,

Quick update. The infection I had been battling got worse and after some change ups with the antibiotics I am now on the mend however chemo 2 has been delayed by 1 week which is a welcome relief.

i have decided to embark on cycle 2 for 1 simple reason, it can’t possibly get much worse, I could of course be wrong.

Thanks Anon613, glad you got through it all, some journey eh?

Hope everyone else is bearing up ok.

kind regards 

Nothing worthwhile comes easy.
Garyb
Posted by

Morning all,

was just wondering how your all getting on? Well I hope.

i embarked on cycle 2 yesterday, my white cell count was low on Thursday but a retest yesterday morning was fine however for cycle 3 I’ll need bone marrow stimulants via injections.

i must say in comparison to last cycle I’m am feeling ok, they have given me s different anti sickness which seems better. 

All the best. 

Nothing worthwhile comes easy.