My Unique FLOT Treatment

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!

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!

Hi my journey started August of 2024. So I started flot treatments October of 2024 4 treatments every other week through November. My experience with chemo wasn’t bad though the first 4 treatments. I had some nausea but not severe. I also had a feeding tube I couldn’t eat or drink anything. I had lost 50lbs needed to put some weight back on before surgery. So after my first 4 treatments I waited 5 weeks. Then had Ivory Lewis surgery in January 9 hour surgery I had two surgeons which were great they showed us everything that was going to take place. Made me feel as comfortable as possible. I can’t stress enough that you feel as comfortable as possible under the circumstances. Trusted them completely. So after surgery I was in ICU for 1 day and 7 days in regular room. So chest tube coming out of my right side. Also tube down my throat. Chest tube because they deflated my right lung to operate on my esophagus. They took out 7 inches of my esophagus. Then used my stomach to make new esophagus. So recovery in hospital was work on my part so walking as much as possible. First couple of days was a little rough for sure. But the more I walked around the hospital the better I felt. Also had breathing exercises to clear my lungs which I did as much as possible. Helped tremendously also. So after 6 days the swallow test to make sure there were no leaks. So watching yourself swallow was kinda cool. So I passed and that was the best day. Also got my chest tube out that day. So they let me have water, juice also could eat jello and popsicles also broth. So they kept me in the hospital for another 2 days to make sure no leaks. Everything was great. So about two weeks of soft foods. Puddings, oatmeal mashed potatoes foods like that. Then more foods that are hardy. The biggest part of all this for me was I had a great attitude also a great support system. Family and friends are so important. Also had a great medical team throughout. Then after 4 weeks I had 4 more treatments of chemo same way every other week for two months. These treatments effected me more for sure. I had more nausea this time and some neuropathy in my legs. So the more I walked the better I felt so pushed myself to walk even when I didn’t want to. So we are all different this is my experience so far. Eating small meals throughout the day also what you can eat. Which can also be different for us. Spicy foods can be difficult also chocolate and citrus fruits at least for me. Definitely a learning curve have to experiment with different kinds of foods to see what works for you. Some of us have more reflux than others. I try not to eat 2 hours before bed that helps me. I don’t have to sleep upright but some of us do. I do have a adjustable bed that is about 10% angle. So I’m 16 months past surgery and 13 months past chemo. I’ve had two pet scans since and clear of cancer as of now. Also I was in good shape before cancer diagnosis which can make a difference. If you have underlying conditions that can affect how you feel and recover. For me surgery was the right decision. Hopefully this helps. Best wishes to all out there with this difficult journey. Sincerely Scott

Hi my journey started August of 2024. So I started flot treatments October of 2024 4 treatments every other week through November. My experience with chemo wasn’t bad though the first 4 treatments. I had some nausea but not severe. I also had a feeding tube I couldn’t eat or drink anything. I had lost 50lbs needed to put some weight back on before surgery. So after my first 4 treatments I waited 5 weeks. Then had Ivory Lewis surgery in January 9 hour surgery I had two surgeons which were great they showed us everything that was going to take place. Made me feel as comfortable as possible. I can’t stress enough that you feel as comfortable as possible under the circumstances. Trusted them completely. So after surgery I was in ICU for 1 day and 7 days in regular room. So chest tube coming out of my right side. Also tube down my throat. Chest tube because they deflated my right lung to operate on my esophagus. They took out 7 inches of my esophagus. Then used my stomach to make new esophagus. So recovery in hospital was work on my part so walking as much as possible. First couple of days was a little rough for sure. But the more I walked around the hospital the better I felt. Also had breathing exercises to clear my lungs which I did as much as possible. Helped tremendously also. So after 6 days the swallow test to make sure there were no leaks. So watching yourself swallow was kinda cool. So I passed and that was the best day. Also got my chest tube out that day. So they let me have water, juice also could eat jello and popsicles also broth. So they kept me in the hospital for another 2 days to make sure no leaks. Everything was great. So about two weeks of soft foods. Puddings, oatmeal mashed potatoes foods like that. Then more foods that are hardy. The biggest part of all this for me was I had a great attitude also a great support system. Family and friends are so important. Also had a great medical team throughout. Then after 4 weeks I had 4 more treatments of chemo same way every other week for two months. These treatments effected me more for sure. I had more nausea this time and some neuropathy in my legs. So the more I walked the better I felt so pushed myself to walk even when I didn’t want to. So we are all different this is my experience so far. Eating small meals throughout the day also what you can eat. Which can also be different for us. Spicy foods can be difficult also chocolate and citrus fruits at least for me. Definitely a learning curve have to experiment with different kinds of foods to see what works for you. Some of us have more reflux than others. I try not to eat 2 hours before bed that helps me. I don’t have to sleep upright but some of us do. I do have a adjustable bed that is about 10% angle. So I’m 16 months past surgery and 13 months past chemo. I’ve had two pet scans since and clear of cancer as of now. Also I was in good shape before cancer diagnosis which can make a difference. If you have underlying conditions that can affect how you feel and recover. For me surgery was the right decision. Hopefully this helps. Best wishes to all out there with this difficult journey. Sincerely Scott

@goldenshadow thank you for explaining this. This will be so important for many. My husband has all of this behind him, but after 5 years he still feels far not as good as you sound!!! Great to hear that you are doing so good!!! My husband needs a lot of supplements and his histamine intolerance which was the cause of all this, is not much better than before, but when he has good days, he feels great and can eat anything. I wish every day for the good days to last forever. And this is exactly what I wish to you: Good days every day!!! Due to today's wonderful medicine and wonderful HCPs, you received the most precious gifts of all twice: your life! Enjoy and live it to the fullest!!!!

@goldenshadow

Excellent... right on schedule and with the right attitude! We've had hundreds of EC and Esophagectomy patients on our twice-weekly Zoom calls... with many varied post-op stories... and bumps in the road encountered. We've been doing these calls for over 5 years now.

Keep it up... only 3 1/2 more years of NED scans to go!

Gary

@mrgvw Thanks Gary could you send me the link for the zoom calls. Appreciate it.