My Unique FLOT Treatment

Your profile is days behind mine. I also had 4 treatments over 8 weeks of FLOT. 4-5 weeks rest and recovery then a complicated surgery over two days early Nov. I started my last 4 FLOT treatments end of December and the side effects are kicking my tushy too. BUT I survived all of it. Next week I start monthly Imfinzi immunotherapy by itself. I had been getting it with the FLOT so I’m not sure what new stuff I will go through. My surgery was atypical because of a 2007 gastric bypass. So my surgeons had to be careful and inventive. 11 days 6 ICU 5 regular room. Surgery was laparoscopic robotic so I have a bunch of holes. No feeding tube they started me on liquid diet and then soft foods before discharging me. I made them get me out of bed every day. I had so many IVs it took 3 people to get me out the door. I sat in a chair from 5am to 8pm everyday or took a walk around the floor with my entourage. Lots of fun things happened but I got through it. I spent my 70 birthday recovering. Slowly but surely you will too. The FLOT chemo is harder after operation. Side effects came on faster and lasted longer. Keep us posted on how your recovering. The surgery was advertised as the event that will save my life. Good luck. May the force be with you.

I had a care team at the University of MN and at Mayo with similar recommendations. I opted to do Mayo's plan of 8 straight FLOT sessions pre-surgery because I didn't want to risk me not getting the final 4 due to energy, strength, determination, etc. I head in for #6 on 2/26. They did say each one could have side effects that get harder and last longer...#5 showed that to be truer than the first four. Developed foot neuropathy which was a bummer, but it comes and goes with my body temperature, so I'm hopeful it won't last. I do ice both hands and feet when getting treatment. Hands have had neuropathy after each one. I'm eagerly counting the days until I am done with chemo (3/26 will be my last one if we stay on track!) and moving into surgery. Dreading surgery but also just ready to put this whole mess behind me. If one can handle FLOT well enough, I do recommend it, though I am getting weary of it. I'm nearly 3/4 of the way done...I can do it, and so can you!

Hi I also had Flot treatments. I’m 63 started my journey August of 2024 stage 3 esophageal cancer. I couldn’t swallow any food and very little liquids. Had lost 45 lbs muscle. So had j tube put in so I wouldn’t lose any more muscle or weight. So started chemo treatments in October of 24. One every other week for 2 months. I handled the chemo treatments with only a little nausea. Waited 5 weeks then I had Ivory Lewis surgery or robotic surgery. Two surgeons lasted 9 hrs in ICU 1 day 8 days regular room. Had chest tube coming out right side after surgery because they deflated my right lung to take out tumor and 7 inches of esophagus. First couple of days a little rough after surgery. But they had me up and walking the next day. So my work started walking as much as I could and doing breathing exercises. The more I did the better I felt. So 6 days passed then the swallow test to make sure no leaks. It was wild watching myself swallow the liquid. So success with the test now I could have broths and jellos and popsicles also coffee and water. Then started soft foods for couple weeks. Then waited 4 weeks after surgery to have 4 more chemo treatments done. My second round of treatments caused more nausea this time. Same treatment 1 treatment every other week for two months. I did get a little neuropathy from the chemo treatments also. So I walk an exercise to get my stamina and muscle back. So I’ve had two scans since surgery and am cancer free at this time. Now I can eat most foods but spicy foods can be troublesome also chocolate for me. Smaller meals also just make adjustments to what you can handle at one time. We are all different so what’s right for me may be different for you. Also depending on if you have any underlying conditions also can affect how you respond to treatments and surgery. I am truly grateful for all the support I had including all my doctors and nurses and most importantly my family and friends. It makes a big difference if you have a great support system. That’s my journey so far. So keep optimistic and positive. Wishing everyone best wishes you can do this!! Sincerely Scott

Hi
Well done for getting through FLOT! Its tough for sure. Apparantly one of the most aggressive mix of chemo to hit the cancer hard and fast (breast cancer chemo is done over a longer period).
I did 3 sessions pre-operation. It woukd have been 4, but I had a ore-planned wedding and woukd not have got through it otherwise! They said the chemo was to reduce the tumour, and 3 rapidly did that which was a huge relief. Prior to the chemo, I had to get an urgent nasal feeding tube installed, as I started choking of food, after months of reducing it from severe pain eating.
I got nausea from the chemo, but ironically was saved from actual vomiting, as I was only on the tube the whole time. Got bad diarrhea at the end though, neuropathy which stayed a while, very dry hands and mouth-also from now getting enough water from actual food though,itchy skin, insomnia, that I can recall.
Got the tube out pre-wedding, and was able to eat food finally, thank goodness, was a major treat for my wedding! 2 weeks for that and a wee honeymoon, and I was in the operation.
I got an infected incision in my neck after surgery, so the j tube installed ended uo staying for 6 months! It was a real pain. 3 more operations to try close it and so many dressings and solutions that didn't work. Its very rare apparantly.
I was supposed to get 4 more FLOT, but the nurses were extremely concerned about me doing chemo with an open wound, as the chemicals can swap out of the wound, and woukd have sat un-wiped under the dressing, potentially causing irritation and burning at mildest.
Still, the surgeon thought it was safe, so I tried it. Did 1 session, and then looked in the mirror, and my whole neck wound had re-ooened to a gaping black hole. It was terrifying! I literally prayed for the answer, and knew I shouldn't do anymore.
The tumour was completely removed, and chemo was just in case, they said just di what you can, and oncology said if it comes back, it won't be because you did less chemo. The number is just a tried amount, its not a fail-safe number. Saying that, anyone who can complete it is amazing, and I definitely would have if it had been safe.
I have now got a sealed neck-yay, so can eat. Was 6 months of no food or liquids, even water in my mouth. Thars dry mouth if I ever had it! Had to use false saliva!
Have had my yearly cancer scan and still clear. Neuropathy gone. Just a bit of chest pain, likely from radiotherapy.
I got a stricture, so had a temporary stent which worked wonders and dilations, reduced to 6 weekly now.
Eating normally, exercising and loving life.
The surgery was 100%worth it. Got all the cancer out, and now I can eat and live.
Best of luck x

My husband's treatment plan is also nontraditional. His esophageal cancer metastasized to his thyroid which we are told is very rare. They put him on FLOT-D. He handled the treatments well with very little side effects and was responding to the treatments so he continued with 13 rounds in a row. While receiving his 13th round he did experience what a appeared to be a reaction. A few days later we were in the ER with acute kidney failure. Three weeks later, his kidneys have started to work again which means no more dialysis. What the treatment plan is moving forward is still not decided.

@recalculating, welcome. That must've been a shock for you, your husband and even the care team that he would have such a reaction at round 13. Thank goodness his kidneys have recovered enough to no longer need dialysis. I will be interested to hear what the treatment plan will be going forward.

What precautions does he need to continue with regard to his kidneys? Do they expect his kidney function to continue to improve back to normal?

I will share his treatment plan once it is decided. Currently, his kidneys have improved enough that we just have to monitor his fluids and continue with some diet changes. His numbers are improving at a rate that it is anticipated that they will completely recover. I think the biggest precautions or changes will be in what is recommended for his treatment and medications moving forward.

I am now 4 weeks post Ivor Lewis surgery - don't wish that on anyone. I've have Home Health PT, OT & a nurse come by weekly and they say I'm close to being discharged as I'm healing "wonderfully". I would disagree with that.

Lots of pain where my chest drainage tubes were. It's like having a gremlin growing out of my side. The site is very hard, tingling feeling from mid chest around my right side to to my back. Hurts like heck. The lung thing is an issue, not much success with the incentive spirometer and lots of dry coughing-even talking is difficult. Still on feeding tube and at last weeks "3 week follow-up" they wanted me to replace my nutrition cartons with real food. Not sure how I'm gonna get my calories and protein at the levels they want in the next 3 weeks, but I'll try like a dickens if it means this feeding tube gets removed. I had 3 IVs blow in my arm (2 in left & 1 in right) still suffering from that: blood cot and nerve damage causing sharp pains down my left side (arm, hip and calf).

Hygiene is an issue. The AquaGuard sheets to cover my J-tube just do not work, even bought some on-line, so no shower but am "bathing". Would love a hot shower.

My lovely wife has been nothing short of a miracle, helping me with my daily meds, feedings early on & flushing, changing dressing, and just about everything else. So thankful for her. God Bless all you care takers out there, its a lot, I know.

@douglasgb Meant to add that the surgery did not get all the cancer out. GRRRR! I mean after all the chemo and surgery, very depressing news. Follow-up with oncology next Wednesday to discuss treatment plan.

Hi Doug
Hoping recovery is easier and easier every day.

You are ahead of my Dad. We were just diagnosed a few weeks back, also stage 3. We have also been advised to have all the FLOT sessions before surgery. Did you also receive any inmunotherapy combined with the chemo?

Stay optimistic until you meet the oncologist next week. From everything I have read even if not achieving PCR with surgery, having surgery would still be the recommended option!