Hubby just had his feeding tube removed on Monday 8/15. Surgery was 3/28. Doing immunotherapy now Opdivo. Ct scan on 10/3. Hoping for clear one. Hope you've gotten your sleeping squared away. (I quit smoking with hypnosis so don't count it out.
I hope you’re still reading your comments. I see this video is a few years old but I wanted to tell you my name is Chris I’ve been diagnosed with stage three esophageal cancer. I’ve battled with acid reflux since I was five years old. I’m currently 61 which is the cause of the cancer Yes I am a side and stomach sleeper. I have also dealt with the stomach acid going into my lungs as well. Anyway I’m currently doing chemo and radiation. Will have surgery like yours about a month after the chemo and radiation I thought about doing a video. Just like what you have here posted. I’m glad to see that someone has beat me to the punch not many people know about this type of cancer. I certainly didn’t. I wish I had because of my history with acid reflux I definitely would’ve been having it checked periodically, keep up the good work I’m glad to see that you were doing well gives me hope and I’m sure it gives hope to many other people that see these videos. Thank you thank you thank you.
I had my first stage 4 tongue cancer in 2010,. 2016 gave me stage 2 n3c esophageal cancer. taking pills for acid reflux which stopped that. Never was surgery mentioned. Throat dilated just before Christmas, CT scan Dec 27, EM visit for fluids yesterday and throat dilation today. Haven't eaten since Dec 26th. Back to new Dr. tomorrow because I can't even swallow water cagy2 on yahoo.
Thank you. My husband is going through this...surgery in a month. I am so scared of losing him. These videos are my saving grace. Thank you. Thank you. Thank you
Im approaching 8 years NED for same disease. Im glad there's others experiencing exact same thing. Not in a negative way. But realising its not just me being tortured at times... #FUCKCANCER
I’m 36 years old now, I was 20 when I started having problems eating, I was pretty fit and healthy, always slept on my side lol. I was diagnosed with achalasia, was told I was going to have key hole surgery to cut open the bottom of my esophagus where it joined my stomach because it had basically closed up. They told me I’d be in there 1/2 nights. Was in there 6 weeks. Nearly died. Was put in a medically induced coma. Was on a ventilator. They had to do an emergency esophagectomy. Was nil by mouth for about 4 weeks. Couldn’t get out of bed for about 3/4 weeks. They damaged my left lung during the surgery. Now I have chronic lung disease, can’t get my weight above 11stone. Can’t eat much at all. Can’t sleep for shit. But I’m still here I suppose and I’ve gone on to have 3 more beautiful babies
I'm in the hospital awaiting my reports. I can't overstate how much these videos have helped me to face this and make plans going forward. You have my eternal gratitude.
Hang in there. My surgeon did not have the results of my post op when he came to visit in the hospital. I had them before he did from My Chart records online. Remember to take the recovery one day at a time. I was in the hospital for 10 days. It does get better as time goes on.
Thank you for your videos, I just got done treatments and will be having surgery sometime in October , really helps to know what to expect and so thankful you posted an update a year ago! Continued success keeping this horrible cancer away! I hope you update again soon! By the way I’m a stomach and left side sleeper I hope I can change that, but it’s gonna be hard !
I just ran across your videos and they are so encouraging. I’m currently doing radiation and chemo before they do surgery. Thank you for posting and I look forward to the next one and/or zoom meeting.
Just been diagnosed with this cancer , some people do not want to know details , but I HAVE to know , so your videos are up front and understandable , I feel i can live with the conseqences of this disease after watching this series so thanks from New Zealand .
I want to add my appreciation for your taking the trouble to make and share your journey with us. My wife is on a good recovery path from her recent esophagectomy, and your videos have been a helpful part of our journey.
Hi, I really enjoyed your videos! I am going on 4 month post IL open surgery. Your series helped prepare me for dealing with some of the changes our bodies go through. Sleeping has so far not been a big problem for me. Seeing the mods you made to your bed explain the new back pain i am now having from sleeping with the head only of my bed elevated. I will try to participate in your zoom meeting. Thanks for taking your time to make these videos.
I just found your videos and wanted to know if you’re still doing the monthly Zoom calls. If so, I’d love to join the next one (tomorrow). I am an esophageal cancer survivor (esophagectomy done August 2016). After watching the bulk of your videos, I see we have faced many of the same post-surgery battles; it would also be great to get to know other survivors. Hope all is well with you!
I had my esophagectomy in July 2019, had a couple of Hernias since then, last of which reoccured this week, just came out of that surgery. I wish i can help anybody who needs it. I remember seeing your videos. The story about the acid is def something i can relate with.
Thank you for your latest update. Great to see you are still doing what you love doing! It’s now nine months since my op. I never subscribed to the six. Meals a day idea, not the rest, relax and recover gig. I only have one life to live, and don’t have the inclination to idle my time away. My Surgeon has admonished me for walking ten plus miles a day, so decided that I would tell him that I don’t walk ten miles, but that I am practicing walking ten miles, for the time when I am allowed to, stating that I would not want to shock my system, when he gives the Okay! He said he knew that I would never listen, and if I’m up to it, carry on. My major issue, due likely from my walking), is the lack of weight gain. The nutritionist now has me drinking Protein Shakes twice a day, which appears to be working. I’ll keep you updated as I continue. Regards Rja
Thanks so muchTerry .... A year after a hiatus hernis operation the valve at the top of my stomach closed shut .nasal tube fed for 5 months... and I then had a POEM to fix it. Then after a month the valve at the bottom of my stomach froze so my stomach would not empty .. It looks like the fix may be the procedure you had .... I am so grateful that you shared your story ... very courageous and generous. Best regards Rob (Australia)
I found your journey tonight. I'm 15 yr post surgery. When I had my surgery at Mayo Clinic in Jacksonville FL 2008, I was only one in a hundred. Your morbidity is the same as me. Aspiration is the number #1 issue. It's is so ironic that everything you have described, I've endured. Funny thing. I'm very healthy for a 69 year old lady & so thankful I had a great doctor who helped me with the decision to have the surgery rather than try the less invasive procedures that probably wouldn't have worked. Take care
this is so good to read..thank you. My 75 yr old sister in law is about to undergo esoph/stomach removal/ alteration..hope you are well and keep on keepin' on
Hey maté great to see your smashing it . I have been diagnosed with it in my lower junction I’m about to finish treatment next week and have my oesophagus removed in 6 weeks I’m 38 years old none smoker you have given me a lot of confidence cheers from Australia your a legend.
@@tatianebassani8792 hey yeah still going I’ve finished all my treatments since surgery first scan was clear. I have my next scan in May feeling good I’ve lost about 20kg though 😳
Plz do another update 🙏 just a quick vid to see how ur getting on...I really hope ur happy and healthy...u have given me great knowledge of how to take care of my partner who had surgery...I live in England 🇬🇧 his surgery was 8 hrs...he caught an infection in hospital and set him right bk...he was in for 6 weeks...he is doing great...but seriously u have really helped with ideas...so thank u for sharing ur story its do appreciated.
Thank you so much for your videos. Your bed retrofit is great, I have been stuffing pillows and blankets in that void, but your idea makes so much more sense. I’m wondering how long it was before you felt you were at your new normal? I am at 1 1/2 yrs out and I’m hoping that I will still improve, but I’m feeling like maybe this is my new normal. Thanks again
It is the third day after the operation. He is on life support at the moment. How does words describe the hell we go through. Life support scare me so much😢
On year 4 here. 7 hour surgery screwd me up. Not going so well due to stroke shortly after surgery. Starting vomit too often for my liking also. This video is awsum. I was wondering if others have these same problems.. My Grandkids keep me going and God bless my daughters for all they have done for me.
Glad to see you're making videos. Your series has really helped prepare me for my procedure in July. I am 42 and was diagnosed in February. I had to do 6 rounds of chemo and 25 of radiation before have the IL procedure. I tell you this, I have never been more thankful that I am a back sleeper! lol I hope to make it to the zoom call, but I work on that day so I will have to see.
Good to see you are doing well I watched your earlier videos not long after my surgery and it was very helpful. Did you ever get your zoom calls of the ground? Oh and im a side sleeper but luckily I’ve only had the horrible burning in the lungs 2 or 3 times
It's so good to see an update here! I watched your last video shortly after my esophagectomy last June, and every once in a while, I'd think, "I wonder how he's doing." I tell you, the dumping syndrome, man, that just sucks. I was hoping it would go away, but after hearing you're still dealing with it 4 years later, I guess I'll have to finally admit it's just something that I'll have to learn to live with.
@@athylahushmand1772 Yes, I still have the problem, but it's far less frequent. With watching how much I eat in one sitting, trying to not drink liquids more than I need to, and limiting my sugar intake, it has greatly reduced it.
@@athylahushmand1772 I lost about 50lbs (went from 175 lbs to 125 lbs), but I was about 25 lb overweight for my body-type when I got the surgery. I currently weigh 135 lbs and will likely never weigh more than 140 lbs even when I try hard to gain weight.
Hi Terry, Thanks for the update and motivation prior to my surgery. Going on 8 months since my Op. Our recovery has been very similar. Looking forward to the Zoom call.
Hello to you, thank you so much for sharing your journey with all of us. I really loved it. I am having this surgery July 13th, 2022, and my emotions are through the roof. I had to have Chemo and radiation before I could have my surgery. To shrink the tumor. So now on to surgery. In my younger days I was stomach, and side sleeper, I wasn't a back sleeper. But then sleeping on my stomach just started giving me issues and I stopped sleeping on my stomach. And I loved sleeping on my stomach. I haven't been able to sleep on my stomach for a very long time now. So now losing
so sorry Stephanie, my husband was just diagnosed with stage 2 /T3 stomach cancer and starts his chemo on August 15th..How are you ? I pray your surgery went well..
Literally just broke down in tears seeing this video. So glad you are alive. Did you have erosive esophagitis grade D? I have that and been extremely ill and feel like im declining. Im young and afraid. Any advice? I have been diagnosed but been feeling this may be the case. Any advice?
I had an EGD, (my 55th in 4 1/2 years) two weeks ago. This was my first since my 8th July 2020, it was discovered that I was retaining a large amount of Gastric contents. I was prescribed Reglan, to attempt to remedy this, if this doesn’t have the desired results, the next procedure will be Pyloric Botox Therapy. Of course I am considering where any excess Botox should be placed. My 22 year old daughter, thinks my forehead would be a good start point, whereas I was thinking of my lips. Capre Diem!!
I'm happy to see that you're doing quit well and that you provided an update. I've seen all your other videos. I was diagnosed last June. After the chemo and radiation things appear to be going well. All scans and biopsies are clean so I'm putting off the surgery as long as possible. I'm scheduled to have scans and biopsies every three months for the next two years at the Cleveland Clinic. The Zoom meeting should help you folks and establishing a support group would be very beneficial for survivors and folks such as me who are considering this surgery. Thanks for posting your journey as I'm sure that many have followed you and they've seen that there is a quality life after Esophageal Cancer. Keep the fantastic attitude going!
@@greghelton4668 The docs said there is a 10% chance that the cancer won't ever return. I had another CT scan two weeks ago followed by a biopsy, both of which came back negative. Keeping my fingers crossed. I continue to hope you're doing well.
@@keithfawbush517 I was told the same thing thing, more or less. My cancer is also “gone” but the doctors are still insisting surgery is still required due to the likeliness the cancer will return. Did they tell you the same?
@@greghelton4668 At first they did. I reached out to many others and half of them told me to have the surgery. The others told me to wait and see. If it's not broke.... you've heard. The half that advised me to have the surgery were, you probably guessed, the surgeons. It's been ten months since the end of chemo and radiation. The doc who scoped me recently said that the effected area was looking great and that he was happy that I bailed on the procedure. Who knows, it might come back. It might not! I'll roll the dice.
@@keithfawbush517 best of luck to you. I’m still on the fence with the surgery ten days out. My cancer was/is at stage two but all seems clear for now. Just not sure what to do.
I had my stomach removed as well due to the disease. Been 18months since my final surgery and so far so good. Can’t eat a lot of stuff and the fat kid still lives inside but is subdued. So i feel your pain and more.
I have my surgery scheduled for August 19, 2022, in 3 weeks. This has been very helpful for me. Would love to speak with you sometime. I live in Orange County, CA. Let me know if you're up for a talk. Thank you.
my husband has surgery Oct 7 2021 for esophageal cancer. Do you still do zoom calls for this? weve watched every video, very helpful to understand next steps and long term plans..thank you and we hope you are well!
Very happy for you, stay strong. Can i ask your age, stage and what order treatment you went through? my father was unfortunately just diagnosed for possible stage 2. Appreciate your feedback and help and peace you can provide. thanks God bless.
hi there ...i had the same surgery 2 years back and suffered acid reflux for quite sometime and now i sleep with 4 pillows i guess iam doing well my advise to you ...if you take some sleeping pill and try on your back for couple of days i guess you will get used to it ...good luck
I am UK based diagnosed with this on 2020 mid Covid year now in year 3 recovery and doing well ups and downs. If u can help guide assist or help anyone here pls feel free to reach out.
Well glad to see your doing ok. Well I jest was informed I have the same cancer. I'll probably have my operation sometime in April. 2022. You're video was very helpful and I can't find any other video out there. Wouldn't mind a little more info on how you made your bed, don't know if my wife will like the bed .
I wish you the best of luck on this journey. My husband was diagnosed June 2021 and just last week finished his last chemo. He has chemo before and after esophagectomy. He was treated at Memorial Sloan Kettering on an AstraZeneca trial (FLOT and immunotherapy.) This is one of the best cancer centers in New York. We saw three oncologists before going with MSK cancer center. Husband’s last scan came back clear and now he has to do 1 year of immunotherapy (once a month.) it’s about 30 minutes per treatment and we have our first one tomorrow. This will be the easy part for him bc immuno doesn’t have the same side effects as FLOT chemo. If you don’t mind me asking, which regimen do they have you on? If anyone else reads this….consider Memorial Sloan Kettering. They saved my mom’s life in 1987 and she’s still alive today. And now they’ve saved my husband too, from this terrible disease.
I wish you the best of luck on this journey. My husband was diagnosed June 2021 and just last week finished his last chemo. He has chemo before and after esophagectomy. He was treated at Memorial Sloan Kettering on an AstraZeneca trial (FLOT and immunotherapy.) This is one of the best cancer centers in New York. We saw three oncologists before going with MSK cancer center. Husband’s last scan came back clear and now he has to do 1 year of immunotherapy (once a month.) it’s about 30 minutes per treatment and we have our first one tomorrow. This will be the easy part for him bc immuno doesn’t have the same side effects as FLOT chemo. If you don’t mind me asking, which regimen do they have you on? If anyone else reads this….consider Memorial Sloan Kettering. They saved my mom’s life in 1987 and she’s still alive today. And now they’ve saved my husband too, from this terrible disease. By the way, MSK told us specifically that chemo before and after esophagectomy is the “most effective” treatment, at least for my husband’s case. He was late stage II early stage III. Locally advanced. They never formally gave us the actual stage, which initially kept us in limbo. It took us 6 months to get his primary care to jump on board and take his symptoms seriously. He did NOT have acid reflux or Barrett’s esophagus. He is 36. Chemo was definitely a challenge and he’s still not 100% back to normal only bc he’s so recent out of treatment. His hair started coming out after round three of chemo. Same during the second round after surgery. He had the cancer at the GI junction….just want to write as much as I can bc I know how helpful this was for me readying other people’s comments and experience. Best of luck to all fighting esophageal cancer and if you ever have questions, natasha@holistichermit.com
Well right now I'm having chemo and radiation type of medication I'm taking is carbo and taxol and I'm taking chemo once a week and radiation twice a week type of cancer I have is stage 3 it's at the lower part of my stomach or lower part of my esophagus and I'm a good candidate for surgery right now everything seems to be going to plan I am a good candidate for surgery and which is the type of surgery that our friend just had so hopefully everything works out well and I will let everybody know how I'm doing take care now and good luck
Hubby was diagnosed Dec 7, stage 2/3. Started chemoradition Jan 4. 28 sessions radiotherapy, with 5 weeks of Chemo (plaxitaxol, carboplatin. Finished Feb 11th. PET scan March 11. Met with Thoracic Surgeon march 17. Tumor is 75% gone. One lymph node completely resolved. Meeti g with surgical team March 25th, surgery scheduled for March 28th. Only obstacle is the tumor is high in the esophagus. We are ready, no place to go but forward. We both retired in September. Go figure. Hope your surgery goes well. Maybe come back and post here. I don't think Terry is doing any more videos, I hope he is doing well too. His series was eye opening and helpful. 🤗❤
Thank you for your videos, they have been really informative, especially as I will be going for surgery in around a month. - how has your sleeping been doing, are the oats still helping? Best Regards, stay well.
Hey Fella, are you still doing the monthly Zoom Meetings? I haven't been able to make the last 2 , but would love to attend the August one? Cheers Roger (London UK)
Thank you so much for sharing your journey, my father has undergone the operation 2 months ago and was recovering fine all these days. But from past few days he has been facing issue swollowing food again and feel congestion in the food pipe. Has anyone experienced similar problem? If so how did you overcome the same? Your advice would be most helpful. Thank you again for motivating the patient as well the family with these videos. Stay blessed
Hi Naveen. I had my esophagectomy a year ago. I had troubles swallowing and always feeling there was air buildup in my throat after eating. I have had two dialations (stretching throat) in the past year. It helps me and it is not as bad as it sounds.
Thank you Jon for your valuable input. Are u feeling better and ease in food intake post this procedure? We will consult our doctor for this. Thank you again
@@naveenc14 Yes feels better after procedure. Some people need it done once and others more But it does help I still can’t eat as much food but I can eat pretty much anything I want. I’m sure your dad will get some relief with this procedure. Hang in there it will slowly get better
Hi, i was diagnosed with the same cancer. Surgery first, back in November, and then now im going through chemo and radio therapy. The thing that really annoys me right now is the feeling of stomach being very full even with a 300g meal. did you have the same experience? Thank you for sharing all these videos its been helpful…
Hello I’m here hoping that you or someone will reach out and offer support. I had my surgery in December 2004 in Irvine CA. I didn’t have cancer thank God. But I had so many tumors that there was no hope in saving my esophagus. I had a gastric pull through. My doctor was so angry that it took so long to diagnose my problem. I even had been to the Mayo Clinic several times. I did pretty good for several years. But these past few years things have not been good. I’m now down to 90 lbs. I’ve been on a feeding tube. Acid reflux is a huge problem. I use an adjustable bed. Depression is a big problem. My Gastro doctor tells me there’s not much he can do for me. I’ve had my gallbladder removed 10 years ago too. I’m a 65 year old female. PS I’ve looked for support groups but since I didn’t or don’t have cancer I’m not welcomed. One group president was even very rude to me. Lol. I understand but I just thought that since we shared the lack of esophagus we share problems?
Hi there! So sorry to hear about the troubles you are now going thru. Hopefully all the tumors were found and removed. From what I've seen, everyone goes thru this procedure/recovery differently. Ya that fading tube sucked! I wish I had some remedy for you. I always try and look at my situation as thank god they found it when they did or I would not be alive right now. I try to live in the moment and know that others have not been that lucky. Everyday that I'm alive is a day that I can experience new things, some of them not so positive (haha) but I accept that. I hope you can remain strong and keep seeking out other doctors for advice and help. It's so strange how one Doctor can change your life. Some doctors really don't care, keep seeking help. I'm sure there is someone out there that can help you. Keep us informed on how you are doing. Wishing you the best and a new trend in getting to a full recovery, well... as best you can with what you have already been thru.
@Rahul Sahani I had my Esophagectomy in May 2019. Before I was diagnosed, I used to have a chronic cough which I thought was because of allergies. After my surgery, I still had a cough, but it wasn’t as bad as before. Now, I no longer have the violent coughing fits. I still have allergies, so I still cough once in awhile. I suspect that my chronic cough was caused by the tumor growing at the GE Junction over the years (probably over 10 years). Before my diagnosis in November 2018, I didn’t have any GERD symptoms, so I didn’t have any warning signs of something serious going on until I had regurgitation issues. Now, I believe a chronic cough could be a warning sign that your esophagus needs to be checked.
@@abhishekroy8646 Thanks for asking. I’m doing well, in general. I had a reaction to one of the chemo drugs, so my oncologist recommended trying a combo of chemo and immunotherapy. Unfortunately, my immune system overreacted, so I was put on various medications (4). Now, I’m down to two medicines. I hope I don’t need to be on them for a long time/forever. I’ve only had one dilation, so far. It was done during a follow-up endoscopy. They found a narrowing in my esophagus.
Diagnosed in March, chemo starting in 9 days then the big op. Great video, very helpful, I had really bad reflux over the years that sounds like your current experience, I would wake up chocking, having a coughing fit that would sometimes last an hour, eyes would end up having no white in them, and sometimes I lost my voice for a few hours. Had an op called Nissen fundoplication a few years ago and that did stop the reflux, but I’d had the reflux for 20 plus years and it seems the damage is done. Thankfully they’ve caught it before it’s spread, not looking forward to the op but at least I live in a part of the world where I’m given this chance.
Hai.sir my mom had stomach cancer age 43.. 3days to go doctor say total stomach remvoed.....if any issues comming on this surgery..... please tell sir you followed healthy tips....
Hello Mr I have chirurgie leave stomack and little eusophage and ganglion 2 december 2019. Actually i commit everinigth and have dumping syndrome if eat sugar. I can sport a lote like ago and working too. Sorry for my Anglish language poor. You think my vomit soon stop? Take car of you
The Ivor Lewis procedure does not remove your whole stomach. Part of the stomach is removed and the rest is fashioned into a tube to replace the removed cancerous esophagus. We have enough of the stomach that it does make acid. I take Nexium to reduce the acid production. Some of the re-flux problem is bile produced by the liver, and due to the fact that the valves that were at the top and bottom of the stomach are removed can cause these fluids to backup into the new plumbing we have after a esophagectomy. A adjustable bed helps by raising your upper body to prevent the re-flux and aspiration into the lungs as shown in the above video. Hope this answers your question. Vincent
Hi i have been through this surgery in october 2021 and am still living with some complications. When I am eating, i get bulging issue near throat. Is it normal in this surgery? I still cant eat solids properly due to this bulging issue
@@Esophagectomy I have been going through the dilations now and then. And 10 back,they did a test and found there is no movement in the stomach which is pulled and all the food is piling up when I eat. Not sure when I will be fully cured. Would be great if any experiences like me are shared
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Hi everyone! I am so sorry I have not had the Monthly zoom meetings.
My esophagectomy for stage 2 was done in December 2021. Your videos gave me strength. Thank-you Thank-you Thank-you!
Hubby just had his feeding tube removed on Monday 8/15. Surgery was 3/28. Doing immunotherapy now Opdivo. Ct scan on 10/3. Hoping for clear one. Hope you've gotten your sleeping squared away. (I quit smoking with hypnosis so don't count it out.
hey, when are you starting your zoom meeting?
hey, how are you doing?? update!!
Just wanted to thank you for the series of videos. Really helped us get through every stage of recovery. Thanks so much!!
I hope you’re still reading your comments. I see this video is a few years old but I wanted to tell you my name is Chris I’ve been diagnosed with stage three esophageal cancer. I’ve battled with acid reflux since I was five years old. I’m currently 61 which is the cause of the cancer Yes I am a side and stomach sleeper. I have also dealt with the stomach acid going into my lungs as well. Anyway I’m currently doing chemo and radiation. Will have surgery like yours about a month after the chemo and radiation I thought about doing a video. Just like what you have here posted. I’m glad to see that someone has beat me to the punch not many people know about this type of cancer. I certainly didn’t. I wish I had because of my history with acid reflux I definitely would’ve been having it checked periodically, keep up the good work I’m glad to see that you were doing well gives me hope and I’m sure it gives hope to many other people that see these videos. Thank you thank you thank you.
How are you
I had my first stage 4 tongue cancer in 2010,. 2016 gave me stage 2 n3c esophageal cancer. taking pills for acid reflux which stopped that. Never was surgery mentioned. Throat dilated just before Christmas, CT scan Dec 27, EM visit for fluids yesterday and throat dilation today. Haven't eaten since Dec 26th. Back to new Dr. tomorrow because I can't even swallow water cagy2 on yahoo.
Thank you. My husband is going through this...surgery in a month. I am so scared of losing him. These videos are my saving grace. Thank you. Thank you. Thank you
How is he?
My brother just underwent this surgery. He’s been in ICU for about 3 weeks. Progress has been slow but every little gain is encouraging!
Im approaching 8 years NED for same disease. Im glad there's others experiencing exact same thing. Not in a negative way. But realising its not just me being tortured at times... #FUCKCANCER
I’m 36 years old now, I was 20 when I started having problems eating, I was pretty fit and healthy, always slept on my side lol. I was diagnosed with achalasia, was told I was going to have key hole surgery to cut open the bottom of my esophagus where it joined my stomach because it had basically closed up. They told me I’d be in there 1/2 nights. Was in there 6 weeks. Nearly died. Was put in a medically induced coma. Was on a ventilator. They had to do an emergency esophagectomy. Was nil by mouth for about 4 weeks. Couldn’t get out of bed for about 3/4 weeks. They damaged my left lung during the surgery. Now I have chronic lung disease, can’t get my weight above 11stone. Can’t eat much at all. Can’t sleep for shit. But I’m still here I suppose and I’ve gone on to have 3 more beautiful babies
So sad to read this. My husband is on a ventilator at the moment. Remove almost his whole esophagus. Every seconds a living hell
12 years this September since my major operation for oesophageal cancer.
How are you?
I'm in the hospital awaiting my reports. I can't overstate how much these videos have helped me to face this and make plans going forward. You have my eternal gratitude.
Hang in there. My surgeon did not have the results of my post op when he came to visit in the hospital. I had them before he did from My Chart records online. Remember to take the recovery one day at a time. I was in the hospital for 10 days. It does get better as time goes on.
Good to see you. Your videos helped me through the esophagectomy. 2 years here
Thanks for the update.
Im glad your alive and well!
Yippee. Glad to see you’re still alive and kickin!
I immediately sent this video to my mum! She is 6 w weeks post-Esophagectomy. Ty for sharing your story. Wishing you continued health!
Thank you for your helping video.
I wish good days for you
Thank you for your videos, I just got done treatments and will be having surgery sometime in October , really helps to know what to expect and so thankful you posted an update a year ago! Continued success keeping this horrible cancer away! I hope you update again soon! By the way I’m a stomach and left side sleeper I hope I can change that, but it’s gonna be hard !
U look amazing my friend
I just ran across your videos and they are so encouraging. I’m currently doing radiation and chemo before they do surgery. Thank you for posting and I look forward to the next one and/or zoom meeting.
Just been diagnosed with this cancer , some people do not want to know details , but I HAVE to know , so your videos are up front and understandable , I feel i can live with the conseqences of this disease after watching this series so thanks from New Zealand .
I want to add my appreciation for your taking the trouble to make and share your journey with us. My wife is on a good recovery path from her recent esophagectomy, and your videos have been a helpful part of our journey.
Hi, I really enjoyed your videos! I am going on 4 month post IL open surgery. Your series helped prepare me for dealing with some of the changes our bodies go through. Sleeping has so far not been a big problem for me. Seeing the mods you made to your bed explain the new back pain i am now having from sleeping with the head only of my bed elevated. I will try to participate in your zoom meeting. Thanks for taking your time to make these videos.
Going for my scope Thursday. Very Concerned but thanks for your videos
I just found your videos and wanted to know if you’re still doing the monthly Zoom calls. If so, I’d love to join the next one (tomorrow). I am an esophageal cancer survivor (esophagectomy done August 2016). After watching the bulk of your videos, I see we have faced many of the same post-surgery battles; it would also be great to get to know other survivors. Hope all is well with you!
My husband was just diagnosed with stage 2 stomach cancer and thank you for your honesty and information...God bless you!!
My dad is having the surgery tomorrow, he is also a stomach sleeper. Thanks for sharing your journey.
I had my esophagectomy in July 2019, had a couple of Hernias since then, last of which reoccured this week, just came out of that surgery. I wish i can help anybody who needs it. I remember seeing your videos. The story about the acid is def something i can relate with.
I’m so glad I found your videos. My husband is just finishing his treatments and will be getting ready for surgery. Such helpful info
Thank you!
Thank you for your latest update. Great to see you are still doing what you love doing!
It’s now nine months since my op. I never subscribed to the six. Meals a day idea, not the rest, relax and recover gig. I only have one life to live, and don’t have the inclination to idle my time away.
My Surgeon has admonished me for walking ten plus miles a day, so decided that I would tell him that I don’t walk ten miles, but that I am practicing walking ten miles, for the time when I am allowed to, stating that I would not want to shock my system, when he gives the Okay! He said he knew that I would never listen, and if I’m up to it, carry on.
My major issue, due likely from my walking), is the lack of weight gain. The nutritionist now has me drinking Protein Shakes twice a day, which appears to be working. I’ll keep you updated as I continue.
Regards Rja
Thanks so muchTerry .... A year after a hiatus hernis operation the valve at the top of my stomach closed shut .nasal tube fed for 5 months... and I then had a POEM to fix it. Then after a month the valve at the bottom of my stomach froze so my stomach would not empty .. It looks like the fix may be the procedure you had .... I am so grateful that you shared your story ... very courageous and generous.
Best regards Rob (Australia)
wish u good health
I found your journey tonight. I'm 15 yr post surgery. When I had my surgery at Mayo Clinic in Jacksonville FL 2008, I was only one in a hundred.
Your morbidity is the same as me. Aspiration is the number #1 issue. It's is so ironic that everything you have described, I've endured.
Funny thing. I'm very healthy for a 69 year old lady & so thankful I had a great doctor who helped me with the decision to have the surgery rather than try the less invasive procedures that probably wouldn't have worked. Take care
Hello Pam! So happy for you! May I ask you please who was the doctor/surgeon in charge of you? Thank you so much
this is so good to read..thank you. My 75 yr old sister in law is about to undergo esoph/stomach removal/ alteration..hope you are well and keep on keepin' on
Hey maté great to see your smashing it . I have been diagnosed with it in my lower junction I’m about to finish treatment next week and have my oesophagus removed in 6 weeks I’m 38 years old none smoker you have given me a lot of confidence cheers from Australia your a legend.
How are you?
@@tatianebassani8792 hey yeah still going I’ve finished all my treatments since surgery first scan was clear. I have my next scan in May feeling good I’ve lost about 20kg though 😳
Plz do another update 🙏 just a quick vid to see how ur getting on...I really hope ur happy and healthy...u have given me great knowledge of how to take care of my partner who had surgery...I live in England 🇬🇧 his surgery was 8 hrs...he caught an infection in hospital and set him right bk...he was in for 6 weeks...he is doing great...but seriously u have really helped with ideas...so thank u for sharing ur story its do appreciated.
Thank you so much for your videos. Your bed retrofit is great, I have been stuffing pillows and blankets in that void, but your idea makes so much more sense. I’m wondering how long it was before you felt you were at your new normal? I am at 1 1/2 yrs out and I’m hoping that I will still improve, but I’m feeling like maybe this is my new normal. Thanks again
It is the third day after the operation. He is on life support at the moment. How does words describe the hell we go through. Life support scare me so much😢
So Sorry to hear this. I really hope things will turn around for the better. Life can be so fragile. Hugs to you!
On year 4 here. 7 hour surgery screwd me up. Not going so well due to stroke shortly after surgery. Starting vomit too often for my liking also. This video is awsum. I was wondering if others have these same problems.. My Grandkids keep me going and God bless my daughters for all they have done for me.
Thanks God 🙏
Glad to see you're making videos. Your series has really helped prepare me for my procedure in July. I am 42 and was diagnosed in February. I had to do 6 rounds of chemo and 25 of radiation before have the IL procedure. I tell you this, I have never been more thankful that I am a back sleeper! lol I hope to make it to the zoom call, but I work on that day so I will have to see.
my husband has surgery oct 7 2021. how did your surgery go? we were in a trail, did 4 rounds of chemo..now surgery, then 4 more rounds. no radiation.
Good to see you are doing well I watched your earlier videos not long after my surgery and it was very helpful. Did you ever get your zoom calls of the ground? Oh and im a side sleeper but luckily I’ve only had the horrible burning in the lungs 2 or 3 times
It's so good to see an update here! I watched your last video shortly after my esophagectomy last June, and every once in a while, I'd think, "I wonder how he's doing." I tell you, the dumping syndrome, man, that just sucks. I was hoping it would go away, but after hearing you're still dealing with it 4 years later, I guess I'll have to finally admit it's just something that I'll have to learn to live with.
Hi
Do you have same problem after esophagectomy?
@@athylahushmand1772 Yes, I still have the problem, but it's far less frequent. With watching how much I eat in one sitting, trying to not drink liquids more than I need to, and limiting my sugar intake, it has greatly reduced it.
Had you gain or lose weight after esophagectomy?
@@athylahushmand1772 I lost about 50lbs (went from 175 lbs to 125 lbs), but I was about 25 lb overweight for my body-type when I got the surgery. I currently weigh 135 lbs and will likely never weigh more than 140 lbs even when I try hard to gain weight.
@@ClayBitner I had 68 Kg when surgery.
Now after a year I gained only 5 Kg and think its not much
Anyway thank you so much for your help
Hi Terry,
Thanks for the update and motivation prior to my surgery. Going on 8 months since my Op. Our recovery has been very similar. Looking forward to the Zoom call.
Do you know Terrys last name? I’m trying to find him. Hope he is well.
Hello to you, thank you so much for sharing your journey with all of us. I really loved it. I am having this surgery July 13th, 2022, and my emotions are through the roof. I had to have Chemo and radiation before I could have my surgery. To shrink the tumor. So now on to surgery. In my younger days I was stomach, and side sleeper, I wasn't a back sleeper. But then sleeping on my stomach just started giving me issues and I stopped sleeping on my stomach. And I loved sleeping on my stomach. I haven't been able to sleep on my stomach for a very long time now. So now losing
so sorry Stephanie, my husband was just diagnosed with stage 2 /T3 stomach cancer and starts his chemo on August 15th..How are you ? I pray your surgery went well..
Literally just broke down in tears seeing this video. So glad you are alive. Did you have erosive esophagitis grade D? I have that and been extremely ill and feel like im declining. Im young and afraid. Any advice? I have been diagnosed but been feeling this may be the case. Any advice?
Did you get diagnosed with this?
There are bed frames that are electric and they allow for an incline, they can help out with the acid reflux.
Thank you for the content iam from south Africa an will be having my procedure February 2024, you have made me feel abit at ease
Wishing you the best! It's tough but it's better than dieing. haha
I had an EGD, (my 55th in 4 1/2 years) two weeks ago. This was my first since my 8th July 2020, it was discovered that I was retaining a large amount of Gastric contents.
I was prescribed Reglan, to attempt to remedy this, if this doesn’t have the desired results, the next procedure will be Pyloric Botox Therapy.
Of course I am considering where any excess Botox should be placed. My 22 year old daughter, thinks my forehead would be a good start point, whereas I was thinking of my lips.
Capre Diem!!
I'm happy to see that you're doing quit well and that you provided an update. I've seen all your other videos. I was diagnosed last June. After the chemo and radiation things appear to be going well. All scans and biopsies are clean so I'm putting off the surgery as long as possible. I'm scheduled to have scans and biopsies every three months for the next two years at the Cleveland Clinic. The Zoom meeting should help you folks and establishing a support group would be very beneficial for survivors and folks such as me who are considering this surgery. Thanks for posting your journey as I'm sure that many have followed you and they've seen that there is a quality life after Esophageal Cancer. Keep the fantastic attitude going!
Your doctor didn’t say that the cancer would return without surgery? I’m clear of esophageal cancer but the docs insist is need surgery.
@@greghelton4668 The docs said there is a 10% chance that the cancer won't ever return. I had another CT scan two weeks ago followed by a biopsy, both of which came back negative. Keeping my fingers crossed. I continue to hope you're doing well.
@@keithfawbush517 I was told the same thing thing, more or less. My cancer is also “gone” but the doctors are still insisting surgery is still required due to the likeliness the cancer will return. Did they tell you the same?
@@greghelton4668 At first they did. I reached out to many others and half of them told me to have the surgery. The others told me to wait and see. If it's not broke.... you've heard. The half that advised me to have the surgery were, you probably guessed, the surgeons. It's been ten months since the end of chemo and radiation. The doc who scoped me recently said that the effected area was looking great and that he was happy that I bailed on the procedure. Who knows, it might come back. It might not! I'll roll the dice.
@@keithfawbush517 best of luck to you. I’m still on the fence with the surgery ten days out. My cancer was/is at stage two but all seems clear for now. Just not sure what to do.
keep up the vids, i'm about to go through it
How are you?
I am a stomach sleeper and was diagnosed in April
I had my stomach removed as well due to the disease. Been 18months since my final surgery and so far so good. Can’t eat a lot of stuff and the fat kid still lives inside but is subdued. So i feel your pain and more.
I have my surgery scheduled for August 19, 2022, in 3 weeks. This has been very helpful for me. Would love to speak with you sometime. I live in Orange County, CA. Let me know if you're up for a talk. Thank you.
my husband has surgery Oct 7 2021 for esophageal cancer. Do you still do zoom calls for this? weve watched every video, very helpful to understand next steps and long term plans..thank you and we hope you are well!
I’m a stomach sleeper and got the same thing as you.
Too bad I missed your zoom meeting. When is your next one?
Very good video..How are you doing sir?
💜💜💜💜💜
I'm 2 years NED from surgery. I have talked to many people with this diagnosis. I would love to be part of your zoom group.
Very happy for you, stay strong.
Can i ask your age, stage and what order treatment you went through? my father was unfortunately just diagnosed for possible stage 2.
Appreciate your feedback and help and peace you can provide.
thanks
God bless.
Sir I need ur help .....pls sir make another video
hi there ...i had the same surgery 2 years back and suffered acid reflux for quite sometime
and now i sleep with 4 pillows i guess iam doing well
my advise to you ...if you take some sleeping pill and try on your back for couple of days i guess you will get used to it ...good luck
I am UK based diagnosed with this on 2020 mid Covid year now in year 3 recovery and doing well ups and downs. If u can help guide assist or help anyone here pls feel free to reach out.
Well glad to see your doing ok. Well I jest was informed I have the same cancer. I'll probably have my operation sometime in April. 2022. You're video was very helpful and I can't find any other video out there. Wouldn't mind a little more info on how you made your bed, don't know if my wife will like the bed .
I wish you the best of luck on this journey. My husband was diagnosed June 2021 and just last week finished his last chemo. He has chemo before and after esophagectomy. He was treated at Memorial Sloan Kettering on an AstraZeneca trial (FLOT and immunotherapy.) This is one of the best cancer centers in New York. We saw three oncologists before going with MSK cancer center. Husband’s last scan came back clear and now he has to do 1 year of immunotherapy (once a month.) it’s about 30 minutes per treatment and we have our first one tomorrow. This will be the easy part for him bc immuno doesn’t have the same side effects as FLOT chemo. If you don’t mind me asking, which regimen do they have you on? If anyone else reads this….consider Memorial Sloan Kettering. They saved my mom’s life in 1987 and she’s still alive today. And now they’ve saved my husband too, from this terrible disease.
I wish you the best of luck on this journey. My husband was diagnosed June 2021 and just last week finished his last chemo. He has chemo before and after esophagectomy. He was treated at Memorial Sloan Kettering on an AstraZeneca trial (FLOT and immunotherapy.) This is one of the best cancer centers in New York. We saw three oncologists before going with MSK cancer center. Husband’s last scan came back clear and now he has to do 1 year of immunotherapy (once a month.) it’s about 30 minutes per treatment and we have our first one tomorrow. This will be the easy part for him bc immuno doesn’t have the same side effects as FLOT chemo. If you don’t mind me asking, which regimen do they have you on? If anyone else reads this….consider Memorial Sloan Kettering. They saved my mom’s life in 1987 and she’s still alive today. And now they’ve saved my husband too, from this terrible disease. By the way, MSK told us specifically that chemo before and after esophagectomy is the “most effective” treatment, at least for my husband’s case. He was late stage II early stage III. Locally advanced. They never formally gave us the actual stage, which initially kept us in limbo. It took us 6 months to get his primary care to jump on board and take his symptoms seriously. He did NOT have acid reflux or Barrett’s esophagus. He is 36. Chemo was definitely a challenge and he’s still not 100% back to normal only bc he’s so recent out of treatment. His hair started coming out after round three of chemo. Same during the second round after surgery. He had the cancer at the GI junction….just want to write as much as I can bc I know how helpful this was for me readying other people’s comments and experience. Best of luck to all fighting esophageal cancer and if you ever have questions, natasha@holistichermit.com
Well right now I'm having chemo and radiation type of medication I'm taking is carbo and taxol and I'm taking chemo once a week and radiation twice a week type of cancer I have is stage 3 it's at the lower part of my stomach or lower part of my esophagus and I'm a good candidate for surgery right now everything seems to be going to plan I am a good candidate for surgery and which is the type of surgery that our friend just had so hopefully everything works out well and I will let everybody know how I'm doing take care now and good luck
Hubby was diagnosed Dec 7, stage 2/3. Started chemoradition Jan 4. 28 sessions radiotherapy, with 5 weeks of Chemo (plaxitaxol, carboplatin. Finished Feb 11th. PET scan March 11. Met with Thoracic Surgeon march 17. Tumor is 75% gone. One lymph node completely resolved. Meeti g with surgical team March 25th, surgery scheduled for March 28th. Only obstacle is the tumor is high in the esophagus. We are ready, no place to go but forward. We both retired in September. Go figure. Hope your surgery goes well. Maybe come back and post here. I don't think Terry is doing any more videos, I hope he is doing well too. His series was eye opening and helpful. 🤗❤
Thank you for your videos, they have been really informative, especially as I will be going for surgery in around a month. - how has your sleeping been doing, are the oats still helping?
Best Regards, stay well.
How are you?
Does it help when you eat more hours before going in bed?
Reflux caused my troubles, and I'm afraid that without a stomach things might get worse.
I had it done also , don’t have a stomach, I definitely can’t sleep on my stomach at all , I sleep on my back or left side.
Hey Fella, are you still doing the monthly Zoom Meetings? I haven't been able to make the last 2 , but would love to attend the August one? Cheers Roger (London UK)
Thank you so much for sharing your journey, my father has undergone the operation 2 months ago and was recovering fine all these days. But from past few days he has been facing issue swollowing food again and feel congestion in the food pipe.
Has anyone experienced similar problem? If so how did you overcome the same?
Your advice would be most helpful.
Thank you again for motivating the patient as well the family with these videos.
Stay blessed
Hi Naveen. I had my esophagectomy a year ago. I had troubles swallowing and always feeling there was air buildup in my throat after eating. I have had two dialations (stretching throat) in the past year. It helps me and it is not as bad as it sounds.
Thank you Jon for your valuable input. Are u feeling better and ease in food intake post this procedure?
We will consult our doctor for this.
Thank you again
@@naveenc14 Yes feels better after procedure. Some people need it done once and others more But it does help I still can’t eat as much food but I can eat pretty much anything I want. I’m sure your dad will get some relief with this procedure. Hang in there it will slowly get better
I know this video is a year or two years old but I would like to let u know I had this had my operation know covering 😮
Hi, i was diagnosed with the same cancer.
Surgery first, back in November, and then now im going through chemo and radio therapy.
The thing that really annoys me right now is the feeling of stomach being very full even with a 300g meal. did you have the same experience?
Thank you for sharing all these videos its been helpful…
yea it will so u need to eat food less and 6 tyms a day
Zoom meeting.....pls set up.sir pls......
PLEASE update...it's been a year, how are you?? did you go through a Chemo regimen before your surgery ?
Hello I’m here hoping that you or someone will reach out and offer support. I had my surgery in December 2004 in Irvine CA. I didn’t have cancer thank God. But I had so many tumors that there was no hope in saving my esophagus. I had a gastric pull through. My doctor was so angry that it took so long to diagnose my problem. I even had been to the Mayo Clinic several times.
I did pretty good for several years. But these past few years things have not been good. I’m now down to 90 lbs. I’ve been on a feeding tube. Acid reflux is a huge problem. I use an adjustable bed. Depression is a big problem. My Gastro doctor tells me there’s not much he can do for me. I’ve had my gallbladder removed 10 years ago too. I’m a 65 year old female.
PS
I’ve looked for support groups but since I didn’t or don’t have cancer I’m not welcomed. One group president was even very rude to me. Lol. I understand but I just thought that since we shared the lack of esophagus we share problems?
Hi there! So sorry to hear about the troubles you are now going thru. Hopefully all the tumors were found and removed. From what I've seen, everyone goes thru this procedure/recovery differently. Ya that fading tube sucked! I wish I had some remedy for you. I always try and look at my situation as thank god they found it when they did or I would not be alive right now. I try to live in the moment and know that others have not been that lucky. Everyday that I'm alive is a day that I can experience new things, some of them not so positive (haha) but I accept that. I hope you can remain strong and keep seeking out other doctors for advice and help. It's so strange how one Doctor can change your life. Some doctors really don't care, keep seeking help. I'm sure there is someone out there that can help you. Keep us informed on how you are doing. Wishing you the best and a new trend in getting to a full recovery, well... as best you can with what you have already been thru.
if i could figure out zoom it would be great
Good to see you.. did you ever had cough after surgery
My father who is 66 years old went through surgery 1 month ago.. but has continuous cough
@Rahul Sahani I had my Esophagectomy in May 2019. Before I was diagnosed, I used to have a chronic cough which I thought was because of allergies. After my surgery, I still had a cough, but it wasn’t as bad as before. Now, I no longer have the violent coughing fits. I still have allergies, so I still cough once in awhile. I suspect that my chronic cough was caused by the tumor growing at the GE Junction over the years (probably over 10 years). Before my diagnosis in November 2018, I didn’t have any GERD symptoms, so I didn’t have any warning signs of something serious going on until I had regurgitation issues. Now, I believe a chronic cough could be a warning sign that your esophagus needs to be checked.
I treated my husband's cough with flu meds. Not tablets.
@@abhishekroy8646 Thanks for asking. I’m doing well, in general. I had a reaction to one of the chemo drugs, so my oncologist recommended trying a combo of chemo and immunotherapy. Unfortunately, my immune system overreacted, so I was put on various medications (4). Now, I’m down to two medicines. I hope I don’t need to be on them for a long time/forever.
I’ve only had one dilation, so far. It was done during a follow-up endoscopy. They found a narrowing in my esophagus.
How are you doing Terry?
Hi there! Any updates? How are you?
Hi, how is everything now? My husband just diagnosed esophageal cancer. I am so scared😢
Has anyone else been plagued with pain. Shoulder Neck pain while belching / Gas pains in neck ???? Bowel movements Etc. Help Please !
Update
Diagnosed in March, chemo starting in 9 days then the big op. Great video, very helpful,
I had really bad reflux over the years that sounds like your current experience, I would wake up chocking, having a coughing fit that would sometimes last an hour, eyes would end up having no white in them, and sometimes I lost my voice for a few hours.
Had an op called Nissen fundoplication a few years ago and that did stop the reflux, but I’d had the reflux for 20 plus years and it seems the damage is done.
Thankfully they’ve caught it before it’s spread, not looking forward to the op but at least I live in a part of the world where I’m given this chance.
Hai.sir my mom had stomach cancer age 43.. 3days to go doctor say total stomach remvoed.....if any issues comming on this surgery..... please tell sir you followed healthy tips....
Hello Mr
I have chirurgie leave stomack and little eusophage and ganglion 2 december 2019. Actually i commit everinigth and have dumping syndrome if eat sugar.
I can sport a lote like ago and working too.
Sorry for my Anglish language poor.
You think my vomit soon stop?
Take car of you
Sir pls arrange zoom meeting .....I m helpless sir pls help me.......m from village.....pls help me out.
Is it possible to have a zoom meeting ? I went through the surgery a year back,I still have some complications while eating. I wish someone helps here
Hi what problem can you explain, my father had surgery before one month.plz reply
@@harshbaindil9515hows ur father doing? Pls reply I'm undergoing this surgery next week
i suffer from Acid Reflux that choking thing i suffer daily
Has it gotten better friend?
R u alive sir
What acid are you talking about since your whole stomach is removed..acid is produced in the stomach..
The Ivor Lewis procedure does not remove your whole stomach. Part of the stomach is removed and the rest is fashioned into a tube to replace the removed cancerous esophagus. We have enough of the stomach that it does make acid. I take Nexium to reduce the acid production.
Some of the re-flux problem is bile produced by the liver, and due to the fact that the valves that were at the top and bottom of the stomach are removed can cause these fluids to backup into the new plumbing we have after a esophagectomy.
A adjustable bed helps by raising your upper body to prevent the re-flux and aspiration into the lungs as shown in the above video.
Hope this answers your question.
Vincent
I’d be interested in zoom meetings
Hi i have been through this surgery in october 2021 and am still living with some complications. When I am eating, i get bulging issue near throat. Is it normal in this surgery?
I still cant eat solids properly due to this bulging issue
Hi Manvi, Sorry that does not sound normal. I assume you went back to the doctor. What did he say about this?
@@Esophagectomy I have been going through the dilations now and then. And 10 back,they did a test and found there is no movement in the stomach which is pulled and all the food is piling up when I eat. Not sure when I will be fully cured. Would be great if any experiences like me are shared
@@manvimohan8182 hie
Hello are you still posting anywhere else ???