FLOT side effects

[Neil62]

Hi, I was diagnosed 6 weeks ago with stage 3 Gastroesophageal Junction Adenocarcinoma and had my second round of FLOT Chemo a couple of days ago. 2 more cycles to go, 4 week recovery then major surgery to remove a chunk of my oesophagus and most of my stomach. 6 weeks recovery after that then another 4 cycles of FLOT Chemo.

Here's my question.... My partner and I have tickets for a gig in Sydney, it's a small seated gig, but it's a 35 minute flight followed by a 2 hour flight to get there, a night away from home then the same flights back. It's 2 weeks after my 4th FLOT Chemo and 2 to 4 weeks before surgery. Just wondering how people who have had FLOT treatment have felt a couple of weeks after the 4th cycle? The day before my second treatment the other day I was more than fit enough to undertake this trip but wondering if the extra cycles might put a dampener on it? After the first treatment days 4 through to 7 were the worst, and the last 5 days were actually quite good. We've only booked gig tickets so far, waiting to see how I feel a bit closer to the time! 

[RJG]

Hi @Neil62 ,

I had oxaliplatin as part of my gastro-oesophageal cancer treatment, but none of the other three medications. The oxaliplatin was excruciatingly painful during infusion, but settled down fairly quickly once finished. I was lucky that I coped really well with the treatments insofar as I was not afflicted with severe fatigue or nausea or much of anything else.

So plan to have a great time at the gig and pamper yourself with the overnight stay in celebration of your last days that you have your stomach.

Life is great, even without a stomach.

Big hugs,

Rick

[Neil62]

Hi Rick,

Thanks for the reply mate. I haven't had the pain during infusion at all, so lucky there. The oxaliplation has given me the neuropathy around  cold sensitivity though, and it certainly lasted much longer after the second infusion compared to the first. Also had the nausea and feeling really unwell , extremely so on day 4 but backing off through the next week or so. 

I've just realised the gig is only 1 week after the 4th chemo treatment, I could have sworn it was a fortnight! So based on the fact my side effects are going to be cumulative over the 4 cycles I think I might have to give it a miss unfortunately. The idea of hours in a plane and at the gig with diahorrea doesn't fill me with joy!

I was originally looking at full gastrectomy but they realised there was more in the oesophagus than they thought so it will be a 2 stage oesophagectomy and radical lymphadenectomy, so a chunk of oesophagus and a big chunk of stomach. It's apparently a far more complicated procedure than full stomach removal, but the outcomes are better both nutritionally and medically so that's a win.

How are you getting on without the stomach? Did you need post surgery chemo? How long since treatment and how are you going in general?

Cheers

Neil.

[RJG]

Hi Neil (@Neil62) ,

Oh, so much to be said, sorry if I have already said it elsewhere...

Operation

My Surgeon said that I needed a total gastrectomy. I asked him about partial gastrectomy, and so that is what he said that was what he going to do. But then I pointed out to him that he is the specialist and I want what will give me the best outcome. So then he reverted to the full gastrectomy option. This did not fill me with any significant level of confidence in him.

I then asked him why partial gastrectomy was not advised. So then he started to flip back to the partial option again - ARGH!!!

I said that I was not requesting partial - I just wanted to know why that was not as good an option. He then said that some of the cancerous cells were found on the lesser curvature of my stomach and that cancer cells could be hiding nearer the pyloric sphincter. This wasn't convincing for me but in the pressure of the moment I chose not to question further an risk the chance of him flipping options again.

It wasn't until the pre-op consultation that I got any sort of meaningful explanation. A 4th year med student intending to specialise in anaesthesia  explained that if they removed the lower end of my oesophagus and only the upper part of my stomach, then I would have a partial stomach that functions somewhat normally, but there would be no lower oesophageal sphincter to stop food from being pushed back up my oesophagus. I would suffer from acid reflux almost all of the time. My response was "OK, I now fully endorse the total gastrectomy option!".

New Diet

From memory, it only took about 9 months before I was eating fairly normal meals. Mind you, they were about half the size of before the op and i was eating it in stages. The main difference is that I now can't tolerate onion unless it has been cooked until it is nearly black. It appears that I might have a similar (but less severe) response to chilli. Nearly seven years later, I eat reasonable-sized meals (250g or so) at a sitting with no real problem.

And now I have a "Seafood-Like" diet - if I see it and like it, then I eat it.

Consequences

One other strange effect of not having a stomach is that I never get hungry. These days I have to remind myself to drink and eat.

I do try to remember to chew my food until it is almost liquid before swallowing, but it's not really a big deal if I don't.

Now, overeating is a real problem. All it takes is one or two too many bites and my gut makes severe protests. A very uncomfortable condition for an hour or so. Because of this, I have leant to drink before eating and never the other way around. The fluid will pass down far more quickly than food and so there is less chance of it all "backing up". I try to separate drink from food by at least 30 minutes and don't drink again for another hour and a half or more.

One consequence of not having any stomach is that I need VitB12 injection (1 ml intramuscular) every 3 months - I do it myself at home.

And (saving the worst until last) I do occasionally wake up in the middle of the night having unconsciously regurgitated bile and then having breathed it in (aspiration). Not particularly pleasant at all. A burning sensation from it coming up my oesophagus, a worse burning as it goes down my trachea and then an ever worse burning again as I try to cough it up from my lungs. I can usually get back to sleep after about 90 minutes.

Summary

So all in all, life is absolutely fine without a stomach - mostly.

I am not a grumpy old man - there are just an awful lot of things that I simply can't stomach anymore.

I'm sure that this will have raised many more questions for you than answers provided. Feel free to throw them at me.

Big hugs and best wishes to you for a successful treatment.

Rick