FLOT chemotherapy? How many rounds?

I did 6 rounds of FLOT followed by esophagectomy. I went every 2 weeks and slowed down to every 3 weeks to be able to tolerate it better. I won't sugar coat it. It was rough. Food and water tasted like metal (which is worse than it sounds.) Had to force feed protein drinks which I still despise to this day. I didn't care about the hair loss. The neuropathy in the fingers and feet was bad. Mouth sores had to be dealt with. I exercised when I could and rested when i had to. I was well coached through all side effects. The one thing that I wish I did differently would be to eat healthier. I lived on junk food and anything with calories. At this point, I had my original stomach and I really wish I ate better food. When I switched to salad, clean meats, limiting sugar, etc., that's when I started gaining weight. The FLOT therapy did work though. I did not work during the chemo although I felt like I would be able to ocassionally. Looking back, I'm glad that my oncologist encouraged me to not work and focus on maintaining my health. Eating got better after the tumor shrunk some after the second dose. I took advantage of this. I rested for 6 weeks between FLOT and surgery. they removed the upper stomach and reconnected the esophagus in the neck. I'm 15 months post op and have NED (No evidence of Disease.) Please let us know how he progresses. We've all been through one version of this or another. We're pulling for him. Hang tough.

I also had FLOT.

Every two weeks for two months. It is nasty, as just described, but effective.

After that, I had 25 radiation sessions plus three lesser chemo infusions.

Then surgery.

I am 20 months out. Scans have been excellent.

He can do it. You can do it.

Being the caregiver is very challenging. You're an angel,

In addition to being mentally and physically tough and strong, be kind especially to yourselves.

We are all here for you! Write or call any time.

Hi Emerson

I also had FLOT, 3 rounds- then a break (to get married!) Then Ivor surgery.
I'm now doing another 4 rounds FLOT, then radiotherapy.
The impact of chemotherapy varies person to person, and there are definitely things you can ask for which help.
My nausea was bad for the first 2 sessions, then a friend told me about Aprepitant. This was a total game changer! I'm not sure what country/meds avail for your husband, but this one has drastically reduced nausea.
FLOT can give pins needles, this happens when you get cold or hot, it's a nerve ending thing. If you wrap warm outside, don't eat ice 7 days after chemo, and use oven mit to get stuff from freezer it helps.
My FlOT seriously reduced my tumour, and enabled me to eat-and even get married in the gap between chemo and surgery! It's definitely worth it because it kills and reduces the cancer cells. This seems to be standard one for oesophageal cancer.
Ask for any advice sheets, I found this helped me prepare.
They were able to remove my whole tumour, but I'm doing more FLOT as preventative measure. They have been able to slightly reduce levels as its 2nd lot, which lessens pins needles.
Chemo can also give a bit of dry mouth, but ask nurses for special Toothpaste/Mouthwash. Can also gargle with salt, bicarb soda and water.
I couldn't drink the nutritional drinks during chemo as made me feel sick. But took soups instead and juices.
You will find what works for him. Happy to share anything else if want to contact individually.
Best of luck 😀
Leila

Thank you so much! Congratulations on your wedding! 🩷🌸

I had 4 FLOT doses, every 2 weeks. I suffered from Neoprathy, mainly in the hands but some in the feet as well. I had a couple weeks off, now at Rochester for the Esophagus surgery. Feeding tube for a month after a week in the hospital. After that 4 more FLOT doses...
I strongly recommend getting a extra bag of juice when getting the pump removed. I was sooo dehydrated. LOTS of Pedialyte, Boost, any high calorie and high protein drinks help.
I didn't get the nausea.
I bundled up cuz I was always cold. Sleep is your best friend to get over the worst of the side effects!
God's Will my friends!

Hi,
I am in a Rochester mayo trial. It has 2-3 weeks of reduced treatments. I have had 2 of 4 FLOT, to be followed by 2 FOLFLOX and 3 weeks of daily Proton radiation. So far it hasnt been too bad. Some neuropathy setting in, light nausea and digestive.
This trial may be an option to discuss with your Oncologist. Its called PHOX trial - only at Rochester and AZ
We all share very similar feelings of surrealness, despair and anger. We search for information, positive stories and results and the comfort and insight of others that can truely understand.
Best Wishes! RickK

Did they give you an estimate of how many rounds it was going to be? We just left the meeting with the chemo lady and she said it’s however many it takes to get to where he needs to be. That feels so daunting right now. I’m completely overwhelmed. It’s no end in sight with scans to monitor. Please tell me this isn’t unusual. Most people I know are saying they did between 3 and 4 rounds before surgery and then how ever many afterward was needed.

We just went to the oncologist and talked with the chemo lady. Most people I’ve spoken with about FLOT have said they were given an estimated number of rounds (anywhere from 6 to 8, maybe separated by the surgery and breaks). So this is what I was expecting. They didn’t give us even an estimate. She just said they do scans and when it’s done what it needs to do that’s when they stop. I’m pretty upset right now. I know it’s going to be very hard and having an estimated end point makes it a little easier. Is this usual? I expected they’d do a scan at some point and, if they needed to do more they would, but to not have a guesstimate is torture.

My husband did 4 rounds of FLOT then surgery. He has done 3 post op but is supposed to do another (he is going to decline the last round due to side effects )

@emersonmoon, I can understand your being upset and upended with no fixed end in sight. It can sometimes help to get through the side effects knowing when and where the end is.

Often a patient gets a total of 8 cycles of FLOT . Four cycles before surgery, then surgery, followed by cycle 5-8 about 6 to 12 weeks after the operation. But as you've seen from others posts, this can vary.

It sounds like your team will monitor the effectiveness of the chemotherapy closely to determine how many cycles will benefit your husband. They will monitor shrinkage to see when surgery may be possible. While you may not have a clear timeline and no goal post to shoot for, I think your team is tailoring the protocol around your husband's health status and the responsiveness of the tumor to the treatment.

I think these are some questions that you can ask the oncologist to make sure. Let them know that you find it hard to deal with the unknown and that an estimate would help.