https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13087#M1457 Hi Devo, Sorry to hear you and your wife are having to deal with this horrible cancer. Yes it does feel like a nightmare in the beginning, and I definitely went through a stage which can only be described as grieving. Similar to your wife I was treated for reflux for several months before GP sent me for a barium swallow test which showed the tumor. I am very grateful for the support of my partner, who would encourage me through the pre-chemo panic attacks, and he was the only person I could talk to about all my fears. Carers have a tough time too. Take care and I wish you both all the best. Kathy Mon, 31 Aug 2015 10:10:19 GMT Kathyhtak 2015-08-31T10:10:19Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13078#M1448 Just wanted to give a shout out and say hello to other oesophageal cancer people here - hoping you would like to share how you are going etc. I'm Stage IV, it's been 14 months since my diagnosis, I'm currently stable and feeling really well and healthy. I find it interesting that the only oesophageal cancer patient I've actually met in person was through a totally random incident - a lady came up to me in a cafe to admire my hair (which was just growing back after losing it); hers was still very thin and it turned out that she'd had oesophageal cancer. She'd had the operation about 10 years previously, was in her mid 80's and looked fantastic. Good for her! Best wishes to all, whatever stage you are and however you are doing. Would love to hear from anyone who would like to share. : ) Kathy Tue, 01 Apr 2014 23:54:24 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13078#M1448 Kathyhtak 2014-04-01T23:54:24Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13079#M1449 Glad to read you are still travelling well and are 14 months past diagnosis. It is now 27 months since my surgery for oesophageal cancer and i have put all my weight back on and feel good. Last check up a couple of weeks ago reported all is well. I have only met on other person with this cancer and his prognosis was not good as it was a re occurrence and it was just under the 5 year mark for him. I met him whilst having chemo and a hi again when I had undergone my surgery and to be fair we both looked really bad. In this time I now have shoulder length hair and nobody would ever know I had been so ill and to be fair it all seems a little surreal now. Best wishes to you too and may you continue to remain stable with your condition. Kas Wed, 02 Apr 2014 11:24:23 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13079#M1449 kasianne 2014-04-02T11:24:23Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13080#M1450 Hi I have recently been told i have Esophageal cancer and will be having chemo and radiation therapy. I had surgery a long time ago for pyloric stenosis and had a partial gastrectomy so surgery for me is not really an option. I hope the cancer will be gone after the treatment but i am still scared. It is good to hear from survivors as it makes me feel a bit more positive. Thank you all Sat, 14 Jun 2014 18:24:48 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13080#M1450 madmik 2014-06-14T18:24:48Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13081#M1451 Hi, just wanted to add myself as a fellow oesophageal cancer fighter. I'm 48 and stage 4 with lung, adrenal spread. I've also had a good result from the ECF regime but it was hard work. . I had a break for a few months and am now on a 16 week course of (kinder) chemo . Just wanted to say that 14 months post diagnosis, the treatment does not effect my quality of life. Nobody would know that I have cancer , except for my snazzy hairdo. My oncologist suggested that I think of this as a chronic disease that every so often needs treatment. Sure my outlook on life has changed but there is an abundance of good in it. Sat, 20 Dec 2014 10:40:58 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13081#M1451 Ros_ 2014-12-20T10:40:58Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13082#M1452 Nice to hear from you and I am glad you are travelling well. I have now finished my chemo and radiation, I was very ill with the chemo and was in ICU for about a month. I am now sporting a cool hairdo (according to my two boys) and my last biopsy showed no cancer and a lot of scar tissue. You are so right about the changes to everyday life and I am pleased to be gaining my weight back, slowly. I was diagnosed in July and am fully aware of the long road ahead, I have another biopsy in late January. I have been told that my cancer has a habit of returning and so I take each day as it comes and am grateful for the time I spend with my family. Being a single mum I am keen to get back to work though! Stay well everyone. Sun, 21 Dec 2014 09:01:56 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13082#M1452 madmik 2014-12-21T09:01:56Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13083#M1453 Became a member to get support for my husband who has had chemo, radio therapy and a stent inserted into hie oesophagus. Wish to connect with someone with similar experience as we aren't sure if what he is experiencing is normal and need some advice on how to deal with the after effects. Wed, 24 Dec 2014 10:12:27 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13083#M1453 2014-12-24T10:12:27Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13084#M1454 Became a member to get support for my husband who has had chemo, radio therapy and a stent inserted into his oesophagus. Wish to connect with someone with similar experience as we aren't sure if what he is experiencing is normal and need some advice on how to deal with the after effects. Wed, 24 Dec 2014 10:22:07 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13084#M1454 2014-12-24T10:22:07Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13085#M1455 Hi all, It's been over a year since I started this thread. Would love to know how others are doing. I am still very well - it's now nearly two and a half years since diagnosis and I am stable. Have been on chemo non-stop during that time (a couple of cycles were delayed due to low wbc and neutraphil counts). Currently on 5FU by IV cannula every Monday. I think I should be getting some sort of 'frequent customer rewards' by now! Actually the reward is that I'm still here. Sadly Ros (above) lost her hard fought battle in April this year. We had become online friends through this and other forums and I miss her support and amazing sense of humor. Anyway, hoping you would like to share how you are going. Best wishes to all. Kathy Wed, 08 Jul 2015 10:52:36 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13085#M1455 Kathyhtak 2015-07-08T10:52:36Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13086#M1456 My wife has stage 4 oesophagial cancer, mets in liver, spine, lung, and lymph nodes around the pancreas, also in hips & shoulder. Very dire prognosis (less than 12 months). She was diagnosed end of July 2015 after 5 months of thinking it was just reflux and being treated with the wrong stuff.. The news shook us like a tsunami. You go through all the emotional states (is it grief?). The first week is pure shock, like hoping that you will wake up from the awful nightmare but you don't. Then next week still shock, sadness, denial etc. At the end of the first month of the diagnosis, i'd say we are accepting of the situation now. It is bad but we are dealing with it. My heart goes out to everyone going through similar situation. My wife has lost 30kg and counting but with Up&Go's (liquid breakfasts), I believe we may be putting the breaks on the weightloss now. Also don't be afraid of chemo. My wife had a big anxiety attack the morning of first chemo, but by the end of the day we were on cloud 9. Take care.. Sun, 30 Aug 2015 11:36:53 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13086#M1456 devo 2015-08-30T11:36:53Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13087#M1457 Hi Devo, Sorry to hear you and your wife are having to deal with this horrible cancer. Yes it does feel like a nightmare in the beginning, and I definitely went through a stage which can only be described as grieving. Similar to your wife I was treated for reflux for several months before GP sent me for a barium swallow test which showed the tumor. I am very grateful for the support of my partner, who would encourage me through the pre-chemo panic attacks, and he was the only person I could talk to about all my fears. Carers have a tough time too. Take care and I wish you both all the best. Kathy Mon, 31 Aug 2015 10:10:19 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13087#M1457 Kathyhtak 2015-08-31T10:10:19Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13088#M1458 Hi it's nice to know I'm not the only one suffering with this at the moment I have only some low grade cells and near the stomach high grade was to go and have an operation but it was cancelled as they found the low grade cells where they were going to cut so now it's all up in the air waiting to have a dye test just to get a good picture of the whole of my oesophagus to see what can be done. Chris Tue, 29 Sep 2015 08:18:27 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13088#M1458 christinebrown3 2015-09-29T08:18:27Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13089#M1459 Hi Chris, This must be a very worrying time for you. The 'up in the air' is frustrating. All I would suggest is that you maintain a healthy lifestyle so you are as prepapred as you can be for whatever comes next, be that surgery, chemo or radiation. Try to have have some relaxation time as well, do whatever takes your mind off current worries - although that is easier said than done! I hope your dye test results are good and I wish you all the best. Please update regarding your situation when you can. Regards Kathy Tue, 29 Sep 2015 09:20:48 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13089#M1459 Kathyhtak 2015-09-29T09:20:48Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13090#M1460 Hi all I am a 45 year old. I was diagnosed with oesophageal cancer 12 months ago. I've had radiation and chemotherapy for 7 weeks last year then the 2/3 stomach removed. It has been 8 months since surgery. I feel a little better but weight gain is my biggest issue. I was never a big person but now I'm a walking skeleton. I started at 78 kg and now I'm down to 64 kg. I find dairy, ensure and protein drinks sends me straight to the toilet. I have 4 small children and hope I am around to see them grow up. It's been a roller coaster of emotions that's for sure. I've been an active and healthy person never smoked or drank excessive alcohol. It does not discriminate this dreaded cancer. As advised this cancer can come back and if I get to 3-5 years without cancer coming back I have a good chance of survival. The uncertainty of the future is still frightening. Would like to know if anyone has ideas on weight gain Regards Gordon Wed, 07 Oct 2015 10:04:30 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13090#M1460 Gordon69 2015-10-07T10:04:30Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13091#M1461 Hi Gordon Sorry to hear about your oesophageal cancer. Hopefully someone here will have some good ideas for weight gain. I have not had the surgery but when my cancer was raging and my oesophagus was almost fully blocked I lost a lot of weight. I found a food diary app was helpful in tracking what food I ate and how many kilojoules I needed to eat just to maintain my weight. I had to look at it as a challenge or job - didn't matter if I was hungry or not I ate. I did not have the issue of lactose intolerance then as you do (but I do have it now as a side effect of chemo!). Have you tried soy based drinks? Does Sustagen cause issues? Can I also suggest you look at the 'Smart Patients' website - it is a USA based site and there is a good number of esophageal cancer people who have had the surgery (which seems to be offered more readily in the USA) and some of the forum topics have been about regaining/maintaining weight post-surgery. All the best. Kathy Wed, 07 Oct 2015 11:18:06 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13091#M1461 Kathyhtak 2015-10-07T11:18:06Z https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13092#M1462 It's now been 8 weeks that I had my Oesophagectomy lucky for me the cancer hadn't formed and this operation was so that in the future it didn't turn into cancer the operation wasn't very pleasant but have make it through. The worst is eating I find dairy is the worst and try to avoid I'm now on lactose milk and products that are the same only one hitch so far is that I had scar tissue grow over the opening which was something I wasn't aware of it has now been fixed so I am eating foods again when that happened I could only have fluids. I do feel for those that had to have chemo and radiation as that must have been awful to have gone through. Fri, 15 Jul 2016 09:05:23 GMT https://onlinecommunity.cancercouncil.com.au/t5/Living-with-cancer/Hello-to-Oesophageal-Cancer-People/m-p/13092#M1462 christinebrown3 2016-07-15T09:05:23Z