Post Surgery Plan : Questions about chemo, cholesterol and more
My husband did the FlOT chemo, four cycles and then surgery. While the hospitalization was a little bit rough, he recovered surprisingly well. He was even back to playing golf about a month and a half later. He developed a severe stricture and has had to have an expansion done. He is going to have another one done next week. He’s lost some weight, but not as much as we feared he would. He seems to be holding right now, eating creatively. Doing the one expansion hasn’t gotten him to eating normally, but he’s able to eat a little more than he could before. He isn’t using the feeding tube anymore and really wants to get rid of it, but his surgeon keeps putting him off. The oncologist is OK with him having it removed if it’s really bothering him. He looks and says he feels almost 100% normal again at this point. He recovered much better than I think either one of us thought that he would. He didn’t need any help when he got home from the hospital after the surgery and aside from being tired more easily he really hasn’t experienced any serious side effects. He seems to mostly be tolerating the food that he is able to get down. He just has to be careful about certain things like foods that are too greasy. Those things are generally bad for us anyway. His after surgery pathology came back good. The cancer was 95% gone from the chemotherapy and that was the part they took out. There was no cancer in the lymph nodes and no metastatic spread anywhere. The surgeon is hopeful that he got it all. Of course, we know that esophageal cancer is sneaky. The oncologist wants him to do follow up chemo in an effort to eradicate anything that might be there that we don’t know about. He is not eager to do this, but we want to have the best chance possible. She is going to have him start on December 1. She consulted with a Gastro oncologist and they decided that he should do the 5-FU chemo alone on a 36 hour pump. It would be the same schedule as with the FLOT, every other week. She said if he can do four cycles, that would be great, but if he can only do two, that would be OK too. He’s going to do one and see how his body tolerates it and then if he does OK with that he’s going to do the second one. Right now he’s thinking about just doing two, but we’ll see how it goes. Has anyone else done this? I’ve never heard of using 5FUby itself, though I’m not an expert in chemo by any means. I know that it can be hard on the heart and lungs and that concerns me because his cholesterol is high since not being able to take statins through this whole journey. We asked the oncologist this, but she doesn’t seem very concerned. I don’t know if she’s aware that his cholesterol levels are not great at the moment. It seems like doctors here in Florida are not very good at communicating with each other.
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@emersonmoon, it sounds like your oncologist is open to taking things one step at a time to see how your husband's body responds to chemo and monitoring that he maintains his quality of life.
Regarding his cholesterol, have you heard about a specialty called cardio-oncology?
Mayo Clinic offers expertise in addressing heart problems (called cardio-oncology), potential or current issues. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.
Have you discussed your concerns about his cholesterol levels with the oncologist and cardiologist?
@colleenyoung He talked with one of the nurses at the clinic today but wasn’t able to talk with the doctor. I think at this point she just wants him to do the chemo before he misses the window where she feels it will be effective, so I guess we’re going to move ahead and hope for the best. I hope he can get at least two rounds in. We tried to get a consult at Mayo in Jacksonville but they don’t take his insurance. My husband’s oncologist here thought it would be good to talk with him but I’m not sure it would have changed the course of treatment. I think she’s trying to give him an option he can tolerate that will also hopefully be effective in a positive way.
Bullsht... Take the statins... I never missed a beat at age 61... and I'm now 67. More harm is done by not taking them.
It is unusual to cut out the other 2 FLOT chemo drugs... but we all know how hard the adjuvant FLOT treatments are. Usually they just cut them back a certain percentage.
Clean post-op pathology is a great start... and it sure sounds like he's doing great so early on post-op. The journey back to eating well, no tummy aches, ass explosions, etc... takes a good year or two. Things are going to improve greatly for your husband... just very sloooowly! We host twice-weekly free EC and Esophagectomy Zoom calls for our fellow patients. Let me know if you'd like the one-touch Zoom link... I'll send it to you in a pm.
Be well.
Gary
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1 Reaction@mrgvw thank you! Yes, we’d like the link for sure. He goes for the third dilation tomorrow; hopefully it helps him to be able to eat better. Monday he starts chemo with the 5FU on a 36 hour pump- he’s aiming for doing that twice, as long as the first time doesn’t completely wipe him out. This is a new chemo plan so we don’t know how his body will react-he’s lost 20 pounds but he’s a fighter. We asked the surgeon for a tumor board so that’s happening on Tuesday but we don’t know if that will prove useful. The oncologist never asked that it be done. The treatment plan is pretty straightforward and I think at this point he just wants to get through it.