Living life after treatment and surgery for Esophageal Cancer.

It's been a while since I have posted, probably out of sight, out of mind. I had successful surgery at Mayo Phoenix August 2023, did a year of immunotherapy and am cancer free. Doing scans every 4 months as a follow up. I am truly bless in that I have had few side effects, lost about 10 pounds since diagnosis, never experienced dumping syndrome, a few bouts of acid reflux, sleep fairly well and can eat pretty much anything, in moderation. No matter how you slice it, cancer treatment does result in muscle loss. One of my questions to the group deals with eating. I try and eat 3-4 times a day, and try to limit the quantities. Lately, almost every time after I eat I feel like I have an elephant sitting on my chest. It usually takes about an hour for things to settle down. Am I eating too much? I try and limit it to about a cup, but maybe because most everything is back to normal, whatever that is, I just forget I had this disease. Does this feeling ever go away? What can I do to minimize it? Does the new stomach stretch out over time?
The second question deals with immunotherapy. I am, or was, built like a linebacker, lifted weights and played a lot of tennis. The Optivo has made my joints ache. Physical Therapists have told me Optivo can cause or exacerbate arthritis. I am looking at a hip replacement now, not from Optivo I am sure, but it sure didn't help. Has anyone else experienced joint pain from immunotherapy? I am not complaining, I am so grateful for all the support I've received, but I liked the old me better. Maybe it's because I am 71. Thanks to all and good luck in you journey.

Grazie Rikneilson. I'm getting to know my new GI system better now. Portion sizes have increased and I get fewer episodes of what seems to be dumping syndrome. The two theories and I emphasize the word theories are that it's due to sugar regulation and insulin rebound or undigested food dumping out of the stomach too soon. I don't fit cleanly into either of these. I was trying to find out WHY this happens so that I could avoid it, but I don't think i'll find the answer with western medical docs. They don't know, nor care. They will blabber on about not too much in one sitting , small frequent meals, low glucogenic foods, healthy fats, etc. I think that Gary is correct when he says that the body will "rewire itself and figure it out".

My question to the group that has the episodes of tachycardia, lightheadedness, and extreme loss of energy after eating. How do you prevent it? Any clue what triggers it? I can answer for me. Too much food "it's that last bite that will get ya" Drinking any fluid with or after I eat also triggers it. To treat it, I lay down and rest as soon as possible. If I fight it, it gets exponentially worse.

Buongiorno,

Opdivo seems to have varied side effects. For you, exacerbation of arthritis. For me it has largely affected my thyroid and put me on synthroid. Others have other side effects. At this point there isn’t enough medical data to project. But we can both say, “Hey, I’m alive.” Hopefully for you, as with me, still having a vibrant and full physical life style.

Curious how you are maintaining what seems to be an inadequate intake to maintain weight. I’ve dropped from 160 lbs prediagmosis to 150 lbs, presently. In order to maintain that weight I consume about the same amount you do, but in 5-6 meals. There was a drop in blood protein levels, which means consuming about 50% more protein every day. Although a strict vegetarian since age 14 (now 82), I do consume fish in my diet. My muscle strength has mot diminished from prediagnosis. Had been landscaping with a lot of stone, 65 tons so far, moving some as large as 225 pounds, and still able to maintain the same pace and effort. Mind you, as a 136 pound HS freshman I benched 228 lbs. Obviously, not all muscle is created equal. Have you also noted the need to increase protein intake?

You ask regarding the feeling about an elephant on the chest. Yes and also taking about 1-1.5 hours to dissipate. About a little more than a cup per meal. Avoid drinking during meals due to that space problem.

My course from diagnosis to now, 2.5 years later, seems to parallel yours, including the year of immunotherapy. Surgery couldn’t get margins, but the Opdivo worked so well that a CT three weeks after the first infusion indicated no more tumor cells present.

Hopefully, you are having no reoccurence and also enjoying a vibrant and fulfilling life.

Ciao

There seems to be similarity in experiences with eating, but there is a wide range and docs and nutritionists make generalizations, which are mot really applicable. Doctoral studies never prepared me for post gastricesophageal nutrition. This has been a lonely ride until just now finding the Mayo site. That quote, "rewire itself and figure it out", is so true. Never had dumping syndrome and my digestive tract has seemed largely on track, with a regular morning constitutional. Aside from some slight adjustments, more from the effects of the chemo and limited size of the stomach, there is little difference ftom predisgnosis. The only notable difference is never feeling hunger, necessitating keeping a timely track of eating times.

Thank you for responding.

Heal quickly, best to you!

I still get hungry, and although my stomach was reanastamost to the esophagus in my neck, my hunger pains are where my stomach has always been, which is really weird. It’s the same for the feeling of fullness It may be due to how much stomach was removed and what sectio was removed

There is no sense of hunger because your vagus nerve was "sacrificed" during esophagectomy surgery. I guess this is standard operating procedure. My husband went through that surgery in June 2023 and can never tell if he's hungry or full. The doctor never told him that this would happen and was even reluctant to admit it later when asked about it. I wish you luck.

True... we do tend to eat robotically the first 12 to 24 months... and once we finally distance ourselves from nasty tummy and intestinal pains (let's say dumping syndrome)... we certainly get cravings... although not actual hunger pangs from before esophagectomy. At almost 5 years post-op I eat quite a bit now, and I rarely get dumping syndrome, ass explosions, diarrhea, etc. So I suppose my new stomaphagus has settled into place and I guess expanded quite a bit. I can now eat a Big Mac and some fries and a small drink... at one sitting. But if my stomaphagus fills up too much... because my taste buds got carried away (and I'm an idiot sometimes)... I just bring up a little and spit it out. This helps. But I rarely have to do this. I'm back to sleeping normally too... can pretty much lay flat, on either side, head on one pillow. I admit I never saw that possibility coming... but it did at 15 to 18 months post-op. I rarely have night-time nasty reflux that gets into my windpipe... and I've never aspirated. I suppose my pylorus functions well... motility ok... and no bile reflux that many can see.

Ok... our next Sunday Zoom call starts in about 45 minutes (9am Eastern).

Be well.

Gary

I am having esophagectomy surgery on Feb 17. I have cancer only in the esophagus thank goodness. I know the surgery and feeding tube for 2 months after is going to be hard. I know it can take up to 2 years to be able to eat normally again. My cousin is 10 months post surgery and still has little appetite and it's hard to eat still. I know it will be a hard road. Then more chemo after recovery.

You can do it!

We all know you can. You know too!

We are here for you.

Keep us informed please.

Gary