Post Op Chemo - struggling: Hello all I... - Oesophageal Patie...

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Post Op Chemo - struggling

Hello all

I had total gastrectomy in early January, came through quite well and am now 2 cycles in to FLOT and struggling, I knew post op would be harder but my oncologist has told me to consider calling it a day.

The first cycle had me bed ridden for over 2 weeks with terrible sickness resulting in A&E for fluids and meds, and then a week later for neutropenic sepsis. My second cycle was stopped halfway through the second drugs on Tuesday because I started to react with chest tightness. I have done nothing but sleep and feel so weak, and not eating much.

I know the majority of people do not complete post op chemo but I feel like such a failure to give it up, my oncologist says it’s so toxic and I need to be careful. He said there’s no study to say that all 8 rounds are necessary and I am lucky my cancer has been surgically removed with great margins and no lymph involvement classed as stage 2a

Has anyone any advice or thoughts? Did you struggle through and are suffering long term affects? Or did you decide to stop and how did it make you feel?

Thanks in advance

Louise

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Hi like you I had terrible effects from the chemo. It was awful for me. Neutropenic sepsis twice and over the 8 flot cycles I spent 8 weeks as an in patient from

Complications but I struggled through. My oncologist gave me a 75% dose for the second four flot treatments after the operation which I mamaged with the occasional hospital stay for complications. So perhaps discuss the dose with your oncologist. It’s impossible to say for certain that the 8 cycle protocol )it’s called the Magic protocol) has to be 8 cycles. But they pass and you get over them. I would say do the rest if you at all can. Then you will know that you have done your best.

Since my last flot I had to have radiotherapy and chemo combined as my post surgery path report wasn’t that good. It was worse than flot, incredibly awful. And took me three months before I could swallow again. But I’m not sorry I did it. So for me, there was something worse even than my experience flot. And I did them both.

Good luck. Paul

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Btw. No effects from the treatments now and it’s five months since the radio-chemotherapy. Although I am now having a secondary treated.

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Hi Louise,

sorry I can't say anything relating to post FLOT chemotherapy but the answer of Paul,

Hi Paul! struck me. I've read your post, so what do you mean by the secondary? Brain? I mean my tumour in the oesophagus was already a secondary, it started in 2013 with a tumour in the tonsil reagion, and I'm very scared of a third!

Good luck to all of us, Monika

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Hi my primary was oesophageal. Hopefully neither of us will have a third!

Love Paul

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Thank you Paul for your reply, I am sorry you have had such a rough ride and are still fighting this horrible disease, wishing you a full recovery.

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You are amazing strong & courageous, you are most certainly not a failure but the drugs they have to give us are poison! In any other circumstance none of us would take it as it could kill us. Thankfully through careful measuring they are not but they do make us very poorly.

I would speak to your Dr’s, what do thy suggest. What do your family think. What would the consequenve be of not continuing?

After all that if it’s not worth it give it up, you have been through so much and your body does need time to heal.

The chemo is just to ensure any little buggers have spread via lymph or maybe in directly adjoining bits. Hopefully they got all that out & your lymph nodes came back clear so your risk sounds low.

Whatever you decide it will be the best decision for you and just remember

We are all heroes for all the crap we have had to go through

Zantri

Xx

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Thank you Zantri, my oncologist is happy for me to make the decision, he says I’ve had a lot of chemo and who is to say any more will benefit me when it could be quite the opposite, he reminds me how toxic it is and how some people do better than others, I thought I’d do better, I really did.

At the moment I’m feeling very ill and have slept mostly 3 days straight, I can’t help but feel if I’d received the rest of tuesdays cycle I would be extremely ill at this point and it scares me. My husband is supportive of whatever I decide, I am still completely torn.

I think I will delay the next cycle by a week and see if I feel well enough to have it.

Thank you for your words once again x

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My oncologist told me only 33% of his patients completed it. I did but like you was very ill, i didn’t know i could give it up no one mentioned that to me. I do have damage to my hearing and kidneys And also suffer from chemo fatigue still 9 years on. Friends who did give up are still alive and living good lives. It is totally up to you.

Hugs Lizzy

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Thank you Lizzy, it is wonderful to hear that you are a 9 year survivor albeit with ongoing issues, it’s certainly food for thought that you have friends who didn’t complete and are still here.

Thank you x

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I gave up after one cycle of post-op chemo. My white blood cell count dropped to a dangerously low level, I was hospitalised for 5 days in isolation and put on a drip. It took me a month to fully recover, but there were no long term after effects and I am still here 12 years later. My advice would be to consider whether subjecting yourself to more chemo will do more harm than good.

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My chemo was E.O.X. and I was to have 3 sessions prior to the op, but after 2, I was on my knees and at the hospital it was decided to stop and not go ahead with the third. My op followed after a few weeks and the histology came back positive with only 1 lymph node showing slight sign of cancer.

I am now 9 months on from the op and appear to be progressing well, you are NOT a failure if you stop the chemo, mine was so bad I found myself praying for a heart attack to end it all, thank god I didn't have one but I am glad I stopped the chemo and because of my reaction to it, they did not even consider post op chemo.

Whatever be happy with your decision, we have been given a second chance and I hope to enjoy life as much as possible.

best wishes Jeff

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I had blood clots in both legs after my second dose pre op. I didn’t have any more chemo at all or radiotherapy. I had the op in 2012, and am really great now. Doing most things my age will allow, trying other things my body doesn’t like. But a great life.

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My husband didn't finish his post-op chemo either. We had to delay the last cycle because of low neutrophils and he was so ill after that one that we talked about it and decided he'd been through enough.

A couple of months ago, his surgeon saw him for a checkup and was so pleased with his progress that he's been signed off as cured!

His oncologist wasn't too worried about him not finishing the post-op chemo.

Lou xxx

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Whats "FLOT"?

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FLOT is named after the initials of the chemo drugs

F - Fluororacil

L - Leucovorin

O - Oxaliplatin

T - Docetaxel (Taxotere)

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Hi. I am so sorry to hear about your difficulties. FLOT is one tough regime. My post-op FLOT was reduced to 65% but I had terrible neuropathy in my fingers which normally went away by the time the next session was due but just before the 3rd session it hadn't so my oncologist removed the Oxaliplatin from the mix. I was worried that this would reduce my chances but my oncologist assured me that it was the best thing to do and that the fact I had already done two sessions was good as hardly anyone can tolerate the post-op chemo. Trust your oncologist, they know best. If your pathology shows no lymph node activity this is a good sign. The post-op chemo is a precaution to mop up any rogue cells. Don't beat yourself up. You are amazing to have come through this. It is one year since my treatment stopped and, fingers crossed, I'm doing fine. Take care and good luck with your recovery.

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