Saturday, May 26, 2007

Esophageal cancer – death by slow starvation

I saw Dick yesterday. He was sitting at a small lunch table in the lounge. But he wasn’t eating and looked like he hasn’t been eating much lately. When I first met him, he was robust and a little overweight. Now he is drawn and instead of fitting into his clothes, he looks surrounded by them.

About 4 years ago, Dick was diagnosed with esophageal cancer. Now when I was training, esophageal cancer hit mainly men who smoked and drank. African-Americans seemed particularly susceptible. Now it has become a disease of older, overweight, white guys. And, while the number of esophageal cancer cases is moving up slowly (one of the few cancers whose rate is rising) the rate in older white guys is climbing by almost 2% a year.

The reasons for the increase in numbers are unclear. Most experts finger overweight as the main culprit – although smoking can contribute and perhaps heavy drinking. Many people with esophageal cancer may have years of heartburn behind them before the cancer develops, but most do not. The cancer just makes itself known when a person starts having a little trouble getting their food down. It may seem to get stuck just above the stomach.

Some people with a lot of heartburn that doesn’t get better with the usually acid blocking pills have a condition called Barrett esophagus. This is an abnormality in the lining of the esophagus just above where it empties into the stomach. People with Barrett esophagus have a very high rate of esophageal cancer and are often screened yearly with esophagoscopy –a thin scope to look into the esophagus – to look for early signs of cancer.

Treatment of esophageal cancer is tough. Usually there is chemotherapy along with radiation to the site of the cancer. Doctors are divided on whether surgery is needed after all this, but in my experience there is a tendency to do everything, so typically the radiation and chemotherapy are followed by surgery. If the cancer is caught early – it hasn’t gone to lymph nodes - about one-third of people with Dick’s type of cancer will live 5 years.

Dick had all these treatments, including surgery, but about a couple of years ago, he became hoarse and a recurrence was found that was somehow interfering with the nerves leading to his vocal cords. More radiation. He was fine for a while and was even able to talk again although he sounded more like Marlon Brando as the Godfather than his old self.

But now, no speech. He sits quietly listening to the others. Also, eating is hard which is why he looks the way he does. This is a sneaky cancer. It tends to come back in other parts of the esophagus and spread around it and is often hard to spot. Eventually, eating becomes impossible and then a feeding tube has to be placed into the stomach. But, life becomes more difficult with this, and the cancer keeps growing. It’s hard to keep weight up and most people continue to lose till there is little left.

So remember, keep slim and avoid smoking and excessive alcohol. It’s the best you can do.

82 comments:

Anonymous said...

My father has esophageal cancer. Several treatments were attempted, and now he is at home under hospice care. Dad stopped eating several weeks ago, although he does have a feeding tube surgically placed into his abdomen in the early stages of his treatment. Here's my question - should Dad be fed through this feeding tube? Is he being starved to death because he is not being fed this way or will his body fail to properly digest the nutrients anyway?

Anonymous said...

a friend of mine has esophageal cancer and he has to go an operation in january. Can someboby suggest few things to b taken care of while the operation.......

Anonymous said...

Your father is not being starved. This is the only way that he is able to get any food into his body, without the feeding tube he would then be starving to death. Rapid weight loss is almost expected to happen once his cancer has grown so the tube helps his body to get some food. Hope this helps.

Anonymous said...

And then there are those who don't fit any of the criteria- my husband. A 33-year-old Caucasian, trim and athletic, never smoked, never drank. Diagnosed with stage IVa esophageal cancer February 2008. He has had chemo, radiation, surgery, more chemo, and at the moment enjoying having much of his strength back and a pretty darn good quality of life. We are appreciating what we have, but acutely aware of the reality of the situatin. We keep the fait and keep up the fight. There ARE survivors.

Anonymous said...

In April 2001 I was diagnosed with esophageal cancer, a tumor - invasive adenocarcinoma, after years & years of heartburn that turned into Barrets Esophagus. A brilliant surgeon, Jeffrey H Peters, then at USC now at the U of Rochester, removed my esophagus & 2/3 of my stomach. Nothing showed up in my glands. No radiation, no chemo! It's 8 years post & no sign of any recurrence. There is hope!!!

Anonymous said...

On July 17th my Dad died of esophageal cancer. He smoked and drank alcohol for 4 decades. He was told he would live 2 months but with kemo and radiation he lived 9 mnths. He was 58 years old. He stopped eating because he could not swallow. His weight reduced to almost nothing but bones. In his last hrs in hospice, he suffered from pain all over his body, he had mumbled speech, couldn't respond to anyone, couldn't blink and lost of breath. In my opinion the oxygen used to help him breath helped the cancer spread faster literaly 24 hrs before death. I watched my dad die I saw the horrible transition of his death. He was gone before his heart stopped and all of his organs shut down. This experience was painful for me. My family and I stayed prayerful and kept the faith. But when it is your time to go and "God" calls, there is nothing we can do about it.

well I'll be said...

I had my esophagus removed in 2000 and developed serious complications that also destroyed my stomach. I was dying from a failed surgery and was eventually air-lifted to St. Louis. But, doctors in St. Louis saved my life and "made" me a new esophagus from my own body parts. The complications from the first "failed" surgery have weakened me, but after my surgery in St. Louis I did not have radiation nor chemotherapy.

salt1 said...

My mother had esopogeal cancer. She didn't die from the cancer it responded very well to radiaiton and chemo. However the treatment was horrible if you ask me to radical. IV drip Monday with one chemo pill 2x a day Mon-Sat.Radiaton 5days a week. One day off for eight weeks. By the last week of treatment she couldn't eat anything. So burnt with radiation and sick from chemo. She was a vibrant women 74 now using a walker all her hair fell out. loosing weight. I was told this was normal. A week after treatment her lungs weren't pumping. Every test came back normal. She was hospitilized on high doses of steroids and antibiotic. Lung samples came up negative. Pet scan didn't show any cancer. Xray showed inflamation only. She was put on a respirator two weeks later we removed. I still think her radiation wasn't mapped correctly and lungs were too exposed. We will never know why my beautiful mother is no longer with us!! Please do your homework we went to the best I think they were too agressive! Sloan sucks!

Anonymous said...

My dad was diagnosed with esophageal cancer about six weeks ago -- he hasn't eaten solids for six weeks, can only ingest liquids. He started chemo a week ago - he is 86 -- he is totally so healthy except for this stage IV cancer -- what should we be doing?

Anonymous said...

My dad was diagnosed with esophageal cancer about six weeks ago -- he hasn't eaten solids for six weeks, can only ingest liquids. He started chemo a week ago - he is 86 -- he is totally so healthy except for this stage IV cancer -- what should we be doing?

Anonymous said...

My mother was diagnosed with stage 4 esophageal cancer in January 2010. It had spread to her liver by the time it was found. She had a stint put in her esophagus which allowed her to eat solid foods,(I would suggest doing this for the 86 year old man) and also a feeding tube put in so she could get nutrients when the chemo made her too ill to eat.(also a good suggestion because chemo will make them not want to eat - and they can starve to death) Unfortunately Mom passed away October 4th 2010 - she was only 62 years old. My heart breaks as I type this but I have a few suggestions for all of you with loved ones that are fighting this: Spend as much time as you can with them, pray often and be strong. I love my mom and miss her every day but I am so glad I was beside her to the very end. God bless you all.
Bridget (OHIO)

Anonymous said...

I took care of my mother, who had lung cancer, and am now taking care of my father, who has esophagial cancer. Mom lived for 2 years after months and months of chemo. Dad has chosen not to go through all of that. He went from around 250 pounds to 150, had one stent put in and I had him back up to 180 in just a couple of months. About 6 months later He started having trouble swallowing again and had another stent put in. Now, 3 months later, the cancer has spread beyond the stents. So now it's just a matter of time and I will do my best to make him comfortable. Enjoy the time you have with those you care about. I miss my mother and will miss my father when he is gone but I would not trade the time I have had with them for anything.

Steve Heller said...

My father in law was diagnosed with esophageal cancer in May of 2010. He is a 61 year old male who was in perfect health. He noticed difficulty swallowing. After his diagnosis he interviewed a few hospitals and ended up receiving treatment at Johns Hopkins. He endured four rounds of chemo and two stent placements. His weight continued to decline and the doctors did not place a feeding tube in till it was late in the game. He is now in Hospice care suffering from this horrible illness. Do your homework and be an advocate for your loved one. Even if you are at the best hospitals there is only one person who can advocate and that's you.

rhonda said...

my husband 56 yrs old had never been to a dr in twenty years. 2 weeks ago he was having trouble swallowing I brought him to emergency that same day he was informed he had stage 4 esophagel cancer the next day they inserted a feeding tube and a hickman cathater for chemo we went home for one week, they trained me to clean and flush the tubes plus give shots to his stomach due to blood clots, we live 3hrs from the hospital but will live in a hotel and i will feed him at nite, while he sleeps, through his feeding tube. we will begin chemoradation tomarrow for 6wks.
and all i can say is use this internet for everything you can think of from questions, info, to education it is your best weapon for fighting this horrible cancer for someone you love

Anonymous said...

My 55 year old husband was diagnosed in April, 2010 with Stage 4 esophageal cancer. He never smoked, rarely drank, no history of acid reflux. This was a big surprise for everybody. He went through 4 phases of chemo (carboplatin and xeloda) and 5 weeks of radiation. The tumor and regional lymph nodes now show no PET activity. Unfortunately though, a new lymph node just under his thyroid has been diagnosed esophageal cancer, and he's now on taxol. Through all of this, he's feeling great. He's eating normally and has had few side effects. The family is praying he can remain strong and fight the cancer into remission.

Anonymous said...

My husband died 3 weeks ago from Oesophageal cancer. It was first diagnosed April 2010 and he was told he was fit enough for surgery. The staging processes were completed (taking a no of weeks) and then he had pre-surgery chemo. The op was scheduled 4 weeks later - this turned out to be an open/close precedure only as the surgeon informed us the cancer had spread to pelvic organs. We were told no more chemo would be effective, so to go out and enjoy quality time you have left (4-6 months).... My husband then was looking so well but could only eat soft foods so stenting recommended - after 2 stents and just 2 months later, my husband was dead - he only lasted a week after the 2nd stent....I feel dreadful for him as the medics were not clear about his prognosis.

Anonymous said...

my mother was diagnosed with esophageal cancer november 2010. she is only 50 years old. she has so many other health problems they said the treatments would not be good for her. she is now on hospice and has a feeding tube. they said she had maybe 4-6 months to live. she has already lost down to 95 lbs. they said hers was caused by gastric reflux. i am just wandering what the last days will be like for her? she stays so sick right now. she vomits everyday. im just wandering if she is closer to the end than we want to believe. we do everything we can to keep her comfortable. i guess we just dont really know what to expect?

Anonymous said...

My boyfriend Mark was diagnosed in Feb of 2010-stage 4. He lasted only until June 12, 2010.He never smoked. He was the pic of health before the diagnosis. It went fast, but we had no idea it would be that quick...he was 49. He got the mesh stent in May. He did well to keep weight on-had a feeding tube too. We tried EVERYTHING-2 fine hospitals-ended up at Cancer trtmnt center-they were too positive though. Even though i now realize that it spread to lymph nodes, liver, and even hips, they made it sound like he'd live on forever!!!Im still so shocked he's gone...Good luck to u all...i would now go to Houston for treatment as i had researched plenty but too late:(
Holly in IN

Anonymous said...

My father was diagnosed with esophageal cancer in August 2010.
He just turned 70 and told me a few weeks ago that he felt 50 on his birthday! After diagnosis he was receivng chemo treatments and did not make the first round because he was very sick from the chemo. His surgery was initially scheduled for the end of October and they moved the surgery up to the middle of September. He had an esophagectomy on September 17, 2010 and hasn't been the same since. He was on a feeding tube until a few days ago because the hospice nurse told him that he had a mass in his stomach and that he could no longer be fed by tube. He has lost most of his interest in food and eats very little by mouth. He has dropped 10 lbs. in the last month and is slowly dying. My dad was a smoker and quit in the 1970's. After he quit, he detested the smell of cigarettes. He has never touched a drink of alcohol in his life! In the last 20 or so years of his life, he did alot of traveling by bicycle and kept himself fit. He tried to eat healthy food but did love his red meat. He also worked as a mechanic all of his life. I sometimes wonder if it wasn't the brakes (asbestos) that maybe gave him the cancer? We will never know. I can only tell you that it has been very difficult to watch him these past few months. We have become a closer family unit because of his cancer. I can only hope that in the future that people can be tested so that they can avoid it becoming state 3 and 4 with very little notice. My father didn't have alot of experience with reflux or heartburn before this.

Anonymous said...

Good luck to all of you that are still fighting the fight! I hope you can beat this thing called CANCER!

Anonymous said...

My father was diagnosed with esophageal cancer, he had the radiation and chemo... Didn't get it in time, it spread to nymph nodes and other spots. The doctor gave him six months, he is now past that point. They have put him on a pain pump but he is over using it. Just recently he started vomiting blood. Can anyone tell me the stages of cancer?

Anonymous said...

My mother was diagnosed with esophageal cancer while on vacation in costa rican in march 2010. She was never one for going to the drs. but while on her trip my sister had finally convinced her to as she had been having such horrible heartburn that had started back in Nov/Dec of 2009. While there the drs did a scope and that is when they found the tumor in the upper part of her esophagus. He got everything in order and she was back home in NY by beginning of April and we had gotten an appt at Roswell. There they told us the she had stage IVB cancer and that they likely hood of a cure was impossible. She didn't want to give up without a fight. She went through 3 different rounds of chemotherapy and 1 six week round of radiation. She had to have a feeding tube in place in June since she was no longer able to swallow solid foods. Next came 2 stents since the tumor had invaded her airway and was likely to cause a hole. They were also hoping this would help with her swallowing and that shed be able to eat solid foods, however she was not. She lost around 60 lbs during her short battle. She went to her last and final drs appt on Nov 17th 2010 and they told us there was nothing more they could do for her and that we needed to contact hospice. By this point she was in alot of pain and was on different pain meds. I called hospice the next morning so they could come in to help with all the pain she was in, unfortunately later that afternoon on the 18th my mom lost her battle with cancer and passed away in my arms. It was the worst possible way and my only wish was that the drs. would've prepared me for the possibility of the way she passed. They never told me that anything like happened was a possibility. I figured she would just pass in her sleep or just stop breathing. My mom threw up alot during her treatments and then was also diagnosed with atrial fibrilation and was put on blood thinners and heart rate regulator medicine on top of everything else. The morning she passed, my sister called and she was speaking to her on the phone and she began coughing, I thought she was getting sick again until she vomitted up blood. I took the phone and got off with my sister and called her dr but by them the blood was just running out of her nose and mouth so i immediately called 911, but it was to late, my mom was gone. They tell me that what happened was that her tumor had grown and ruptured an artery in her neck and she bled out. It was horrible and I only wish I had been more prepared for the possibility of it happening like that. It has been 4 months now since shes been gone and I still can't get the image out of my head with the way she passed. I miss my mom so much but am thankful that she is no longer in any pain and is in a better place.

Anonymous said...

My father was just diagnosed two days ago with esophogeal cancer. It scares me that he will likely die such a horrible death.

I can say that I don't recall a time when he didn't have a bottle of Maalox, so this is no doubt from years and years of GERD. He went in for testing pretty regularly but he knew the odds for getting it were high, given his history.

I just wish there were a way for him to avoid all of this.

Anonymous said...

My sister is fighting esophageal cancer. She was diagnosed in December of 2010 and within 1-2 weeks she was checked in at M.D. Anderson center in Houston Texas. She received 3 rounds of chemo and then decided that she wanted to return home. Her treatment was transferred to our local cancer center. She was staying on the program in Houston, but when she came home, the doctors here told her that she could shift her chemo treatments if she wanted to. She took 2 of the 4 remaining treatments. She delayed the 2nd round but she did receive it. The 3rd round she delayed as well. Then she went in for her appointment last week, she was placed in the hospital immediately. She had a high fever. Doctors thought that she had an infection...but she had was is termed "tumor fever". Right now they are working on getting her sodium up. Something with her blood pressure as well. Most meaningful is that we did finally get information as to the tumor...it has increased in size...I came in search of this blog to get the personal stories of other experiences...what the ending is going to be like...Our parents are both still very much alive. Mother is 89 and Father will be 89 in August. This personal story is the reverse of what I have been reading...of parents passing with the disease. I do believe that my mother has already come to terms with a child predeceasing her. I do believe that since the frequency of this disease is on the uprise, it seems that there should be an awareness raising in our media. My readings have indicated that stage 1 and 2 are much, much more treatable. I will be going in for my routine colonoscopy and when I do, my doctor is going to scope my upper GI. I am having no symptoms and that is when this disease needs to be detected... My sister just turned 64...It is probably her last birthday...

Anonymous said...

My heart breaks for all who have to suffer watching a loved one challenged with this cancer. My beloved husband was diagnosed December 30th, 2010, the same day Harmon Killebrew announced his cancer. He had six weeks of radiation concurrently with 2 sessions of chemo. He was too ill for the third chemo session.

After a consultation at MD Anderson, Frank is again taking chemotherapy, only this time he is receiving Oxilaplatin, leucovorin, and 5FU. He seemed to have a good response to the chemo the first time around and we are hoping that this less toxic chemo can finish the job.

MD Anderson did not think the operation was a good idea for him.

Frank has gained the weight he lost with the first chemo and he is trying hard to maintain his weight with this chemo regimen.

Does anyone else have any experience with this chemo regimen?

Anonymous said...

My heart and prayers go out to all of you that have to experience this dreadful disease. My father, Wally, was diagnosed with stage 3 Esophageal Cancer in the Spring of 2009. He underwent Chemo and Radiation and was too weak to have the surgery to remove his esophagus. After a few months (Spring 2010) he thought he may be strong enough. Test showed it spread to his liver and it was too late for surgery. Now Stage 4. My dad was given another round of chemo. Early fall 2010, he had a stent placed just a week before his birthday Oct. 2nd. His candles for his 76th birthday celebration were places in a LARGE pizza. He changed his diet dramatically to fight this cancer, but had to splurge for this birthday. At Thanksgiving, I could tell changes were taking place. On Jan. 27th, 2011, during the Oncology appt. the dr. suggested Hospice. My dad was hospitalized on Feb. 7th with severe dehydration, malnourished, and pancreatitis. The doctors tried to accomodate him as best they could. My dad and family wanted a feeding tube, but the doctors were against the idea. Finally, on Feb. 25th they attempted it but it wouldn't work and the tube out of his nose had to be removed. I said "if they can't do anything else for him, let's take him home." He was discharged from the hospital on Feb. 26th. For a few day prior to discharge, my dad seemed to be coughing up old black colored blood. It broke my heart to see him do this. All I could do was hold the cup and encourage him to hang in there and get it all up. My 3 children made the 5 hour trip to see their grandpa that evening. By this point my dad is alert, but not saying much, just looking around. At 2:40 am, on Feb. 27th, my dad woke up coughing up the blood again. My sister, mom, and I, all woke up with him. I could tell he was having more difficulties getting it out. I was afraid he was going to choke on it and called hospice to see what I should do. The nurse suggested I put a small pill under his tongue and it should dry it up. I told her I was afraid he was going to choke and told her I was going to try a breathing treatment. I put the mask on my dad mouth and started the treatment. Two times my dad's eyes got very wide. I don't know it he was in shock or what was happening??? My mom asked him to squeeze her hand and he barely could. I could hear that horrible death rattle and then we knew he passed. My beautiful children woke up the next morning and their wonder amazing grandfather was gone. Rest in peace dad!! You are greatly missed!!!

Anonymous said...

My Dad was diagnosed October 21, 2010. He had lived a full life up until October. His appetite had been slowly dwindling and he had some abdominal pains. But we had thought it was stress- he was in the process of buying a retirement home by me so he could spend more time with the grandchildren & fishing by the Jersey shore. He tried several rounds of chemo., but just after Christmas we were told it didn't work at all and the cancer had spread. He almost died mid-January from malnutrition. His organs were shutting down. He didn't say anything. It just so happened a nurse recognized his heart was irregular and sent him to the ER. He spent several weeks in the hospital and then the rehab. regaining strength so that they could try another chemo. But just when we thought he was almost there, "coffee grounds"- the tumors were blocking his intestines and backing everything up. He got pneumonia and MRSA. Back in the hospital. Eventually, the doctors admitted there was no hope, as if there ever really was. Three months ago today, he spoke his last words. He was lucid up until that last Sunday, when he asked what we were all "waiting for" and "when's the bus coming" ( he was a bus driver for over 40 years). He told Mom to "shut up"- must have been holding that in a long time. But he also told her "It goes without saying..." that he loved her. Three months ago today, we put him on hospice and I left his hospital room with him quietly sleeping. The next day, just 5 minutes after I arrived and promised I would take care of Mom, he took his final breath. October 21, 2010 to February 28, 2011 were Hell due to esophageal cancer. There's been a Hero in Heaven ever since. RIP Dad. I love you!

Anonymous said...

My beloved Nan was diagnosed with Stage 3 esophageal cancer in February 2011 and sadly passed away on Sat May 28th 2011.
Aged 79 with a heart condition, all radical operations and treatments were quickly exhausted so after a brief spell in hospital to stabalise her vitamin levels, my Nan made the correct decision to be cared for in the last couple of weeks in a hospice.
She died a very peaceful death in a lovely hospice with no suffering and all her family by her side. The only pain she experienced throughout the entire process was a little back pain that was manageable with a morphine drive and the mental anguish of not being able to enjoy a nice meal.
I urge any relatives of elderly loved ones with this disease at an advanced stage to consider hospice care over intrusive major operations which may prolong their relatively low quality of life just a few more months.
My Nan died a very dignified death after slipping into a coma and although we are all naturally very sad we are also extremely grateful that she passed away peacefully with no suffering. Rest in peace my beautiful Nan.

Steven Williams said...

My father-in-law was diagnosed and treated for esophageal cancer a number of years ago. He has since lost weight and energy. He was once a very energetic and virile man, he was 65 when this occurred, was a former wrestler in college, jogged 3-5 miles everyday and biked the same amount. I found a website recently that made mention of the fact that fosamax and other bisphosphonates are being investigated by the FDA as having a possible connection to esophageal cancer and was wondering if anyone had heard about this. This is the webpage: http://www.yourlawyer.com/topics/overview/oral-osteoporosis-bisphosphonates-esophageal-cancer-lawsuit

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Herman Kattlove said...

Thank you.

Anonymous said...

My husband age 57 with a life long history of Gerd, was diagnosed in Nov 2010 with stage 4 esphogeal cancer..He had had endoscopes in MAy 2009 and July 2009 amd dec 2009. IF hsi Dr would have done a scope in may or june of 2010 , maybe he would be alive today.
we choose CTCA in Phila, as they would see us the 'next day/ BIG BIG mistake.
they Pushe for a stomach peg tube, even though he could eat well. 12 hrs after surgery for the sub clavin Iv and peg infection set in BIG TIME, eight weeks as in patient in CTCA with NO CHEMO . Feb 4th I brought him home to die and on march 1st 2011 the Lord took him home.
This is NOT Meduical care in the 21st century of the USA!
Drs promote Pills and pills and pills and pills BUT do they REALLY read and reveiw your mediacl history and make VALID decisions for care?
my husband saw the Dr evry 3 months like closk work for over 2 0 years and he eneded up a white male age 57 , history of GERD, Mallory weiss tear and dies of Stage 4 Espho geal cancer...

dctrivedi said...

My Mother 64 had acncer in her Food pipe.She undergone chemo and radiations and there was improvemnt but one year back blood strted coming in the cough.One Doctor suspected that some time side effect of the chemo, is TB.Based upon the advice the treatment of TB (DOTS) was strted around two months bak, we found some imrpvement in cough but on 9th July'11, after taking food ,she went to toilet and she Vomit blood in huge qty. and collapsed.My doubt is whether treatment suggested for TB was wrong or right?
D.C Trivedi(India)
trivedi.dc@mahindra.com

Anonymous said...

My step father has been diagnosed with esophageal cancer in the last few weeks and we are in Australia. He is having scans for staging in the next few weeks but has already been told surgery is not an option. I am trying to source information and came across this blog. There is little or no information on Australian websites and this form of cancer is proving to be very frustrating in terms of getting information and best forms of treatment. He will be 70 on Saturday. Reading some comments is very disheartening with the way he will pass. We are trying to stay positive but it all just seems hopeless. I am trying to be an advocate for the family, but I am also to scared to tell them what I have found and also tell my stepfather what it will be like for him going forward. Life is so short, and pain and suffering is the worst way to end a beautiful life. I just wish there was more that can be done and more support / information over here!!

Anonymous said...

My husband was 59 years old when he died of esophageal cancer (stage 4 when diagnosed as it had already spread to his liver). He had several rounds of chemo, and the max. amount of radiation (never tolerated it well). He never regained his appetite, lost weight, and was given a feeding tube into his stomach (fed liquid nutrition). Wish we had gotten into Hospice sooner. They were wonderful, as they helped us cope with his pain (with meds), and ours (losing my husband and the boy's father) way too early. It is not an easy path, and it is a hard way to go. I tell my boys that if I ever get something like this to call Hospice, keep me as pain free as possible, and let me go! God Bless all who are dealing with this awful disease.

Anonymous said...

My husband was diagnosed last Oct 2010 with this cancer. we went to the UK hospital in Lexington, KY, only to have them drag everything out that they could possibly do for him. it is September 28, 2011, and he is unable to eat or drink without throwing up. Everything that comes out either way is black. The "specialist" doctor at Markey Cancer Center drug his feet until Feb of this year to do the "big" surgery of taking out his esophagus, but changed his mind at the last minute to just do an exploratory by moving his stomach aside, claimed the cancer had spread, and sewed him back up. he about choked to death at Markey because they had regular food waiting for him when he came to. They had brought him a regular diet of baked chicken and green beans. he was starving, and was supposed to have a liquid diet. it took them 2 days to get it straight, but by then he was already throwing up everything, and this went on for 3 days and 4 nights. now i'm watching him waste away with nothing else i can do for him. God bless you all that has had to deal with this.

Tom said...

My wife diagnosed with stage V esophageal cancer in Oct 2010, died on Aug 19th, 2011. 64 years old. They didn't want to do surgery from the beginning because it had already spread to lymph nodes throughout her torso. We did do radiation and chemo. Put in a feeding tube. The radiation actually worked--it shrunk the esophagus tumor 90%. We were even able to take out the feeding tube and she could eat orally again (that was a wonderful day). The first round of chemo didn't work at all: Taxol and Cisplatin. Things got worse. Next round of chemo helped (per PetCT) 5-FU. But had to stop it half way through because cancer went into her lungs. She was put on suplemental oxygen. It kept get worse and harder to breath. Dr told me to sign up for hospice. I didn't want to, I didn't want to give up. But after a trip to the emergency I really had no choice. 3 days after we signed up for hospice, my lovely wife died, respitory failure from complication of esophageal cancer. No blood or anything. She just stoped breathing. Died in her own home, in her own bed, with prayers, myself and family around her.

Natalie said...

I am sorry that so many of you have lost your loved ones to this demon. I am a white 42 year old woman. Before being diagnosed my only health issue was that I was over weight. I was diagnosed in June of 2010 with stage III esophageal cancer at the junction of the stomach. The symptoms of acid reflux and problems with food getting stuck appeared very suddenly. I received 25 treatments of radiation along with 5 weekly chemo treatments using Carboplatin and Taxol. In October of 2010 I had 2/3 of the esophagus and 1/2 of my stomach removed along with 30 some lymph nodes during a minimally invasive surgery. I had a j-tube placed in my abdomen for tube feedings. In December of 2010 I began another round of chemo using Camptosar and Cisplatin. I had 5 cycles of treatment. Today I feel wonderful! My energy level is returning. I am eating regular foods. I lost approx 80lbs during my battle with this cancer. It is a long hard road but there is hope.

Jeff Carlstead said...

Living with Esophagus removal
Would love to hear ways of coping.....
Traveling and sleeping at 30 degrees:
Purchase four Yoga Blocks......4" x 8" hard rubber
Pick up end of bed frame and place two blocks under the frame leg, sometime rollers ....no problem if you not strong enough to lift bed....call the hotel desk for help!!!! Any frame works ....gets you to 30 degrees and highly portable and light weight....am traveling a lot...with no fear of Gerd
Wedges tried for a year but kept slipping down and woke up flat with Gerd .....
Please send ANY lifestyle ideas!!!
GOD BLESS
I am
Jeff Carlstead LaJolla, California
Vagal Sparing Esophagectomy 3 1/2 years ago
MD Anderson-Houston
Dr Wayne Hofstetter

Anonymous said...

My 48 year old husband was diagnosed with Stage 1 EC in February 2011. Barretts patient, he went for his screening every two years. This year, there was a tumor. March 3rd, he had it reomved. Very difficult surgery, but no cancer in the lymph nodes and no metastisis. July came and he started having pains in his back. Doctor said it was "the pain of healing". Come October, we went for our six month check up to find the cancer had come back and spread to his bones and neck. Started chemo to extend his life a few months. We thought we had beat this. If it's not in the lymph nodes, how can it spread?

Anonymous said...

My dad just lost his fight with oesophageal cancer, just 4 months after diagnosis.

He went in to hospital 3 months ago to get a stent to help him eat and they tore his gullet during the surgery, meaning no stent. He then spent 10 days fasting for surgery that never happened due to infection. Finally, a feeding tube was placed into his stomach, which also got infected, and by this stage he had lost so much weight he was unrecognisable.

After 7 weeks in hospital he started a 6 week course of cancer treatment.

This only lasted 2 weeks 4 days: week 1 - radiation,
week 2 - 21 hrs chemo daily and radiation
week 3 - 4 days of radiation.

After 4 days of radiation they decided that he was not strong enough to receive any more treatment (the treatment never should have started as the tumour had not spread and he needed to build his strength first).

As a result of chemo, my dad caught an infection and went into kidney failure. We were told he had 2 days max to live so we took him home. He lasted 2 weeks and 2 days after being discharged from hospital.

His kidneys started working again, but he was too weak and malnourished and got another infection.

The best thing we did for my dad was to take him home. We got about 10 days with him where we were able to talk to him, lie with him, spend time with him. Then he got weaker and weaker, harder to understand, and slept more and more. Then he went unconscious, and 36 hours later he was dead.

My dad was a hero and a legend, and he fought to the very end. He went in to hospital to get a stent in order to be able to eat and it never happened. He spent 10 weeks in hospital and came home to die. I love my dad and miss him desperately.

Anonymous said...

My husband was diagnosed with Stage Iv esophageal cancer in February 2011. His only symptom was getting food stuck. He had an endoscope and Pet scan, the cancer was throughout the esophagus and 50% of liver involved. He had a 1-10 chance of survival. He went through chemo, and radiation, and a j tube. he was in constant pain and unable to even take his meds. He passed on May 25, 2011 at the age of 54. His last days were spent with hospice. His doctors lied and failed him and us in so many ways. They didn't get that all that medication he couldn't swallow or the fact he was full of fluid and his kidneys were shutting down. I have told my kids if I get diagnosed with cancer I want hospice and not lies. I miss him everyday this is a horrible cancer. You watch your love one starve to death.

Nora Ray said...

My husband was diagnosed with Stage 4 Esophageal Cancer on Aug 5 2011. They gave him two rounds of the heavy duty chemo (including Xeloda) and he had to be hospitalized after each round because it weakened him so badly. They did not do radiation therapy. They tried a milder chemo for one round, this was Nov -Dec 2011) but it did not stop the tumor growth. He has been on anti-body therapy once a week since late December. We were told he would have a bad acne-like rash if it was working. He has only had a mild rash but he is still here with us and seems a little stronger in the past two months. We have a CT scan to see how the tumors are doing on 5/16. He has a gastric feeding tube and takes Jevity 1.5 thru it, about 1000 ml/day. He also has a stent and can swallow liquids and some medications but his taste buds were damaged by the chemo so he doesn't take anything else by mouth. All things being equal, I think things have gone much better for him so far than they could have. So far he has not had any pain which is a big blessing and even tho the cance has spread to his lungs in December he has not had breathing issues. Hang in there, all of you who are also fighting this. Try to live your life one day at a time and not borrow trouble from the future.

Anonymous said...

My girlfriends son at age 29 was recently diagnosed with stage 4 Esophageal cancer. It breaks my heart as she lost a child before this and was married for a number of years to a guy who is an alcoholic. My girlfriend is strong and I am wondering what I can do to seriously help? I have researched all kinds of things, done the little things with her home so she would not have to attend to it at all and delivered packages to various treatment centers in Michigan. The young man has gotten one round of chemo, but he is unable to eat currently without tons of difficulty. Because the diagnosis was recent there are lots of steps involved I know. So far in Michigan we have managed to get information to places and am starting the process of appointments. I have been reading up on how to be a better supportive caregiver to all this through the American Cancer Society. Fortunately, I posted on facebook to round up chemo patients to speak with and have been doing so to get some tips. I feel so much for my girlfriend during this time of such dire need. And I thank everyone on here for sharing there tidbit of history as tough as that may be.

Anonymous said...

MD Anderson in Houston
Dr Wayne Hofstetter

Anonymous said...

In December 2003 at age 52 I was diagnosed w/ stage 4 EC adenocarcinoma and given a 15% chance to live 6 months. Chemo, radiation, radical surgery and 8 years later I'm still here and living a high quality life. You would never know I had been so sick. My advice: don't let fear rule you, don't be angry about the situation, be a courageous warrior.

Marge Deranek said...

Thank you all for the many stories that you have shared.I have just placed my x-husband in the nursing home and I have been caring for him for a year now. He is having problems with his feeding tube and has turned ashy color/ his fet are darkening. As a medical student I am seeing him fail daily. I asked the doctor for a ball-park time frame and the doctor totally avoided it. I can only assume that it will be soon. God bless those who are living with this cancer, and for those;like myself, watching those they love go through this horrible disease. I will continue to open as many eyes to this fight against esophageal cancer. I never knew of it existing and I believe that it should be voiced to the world. God Bless.

Anonymous said...

I couldn't read all these comments without taking time to mop up the tears. My husband, Jerry was diagnosed with stage 4 esophageal cancer in late oct. 2004. After one round of chemo, he passed away on March 10, 2005. Like many of your stories, he was not overweight, didn'tsmoke or drink and seemed healthy and fit. I continue to look for clues as to why this horrible disease is continuing to grow.

Anonymous said...

I am a survivor of this dreaded disease
Please please listen carefully:
MD Anderson
MD Anderson
MD Anderson
Absolutely nothing else you need to know except
Trust
Trust
Trust
Dr Wayne Hofstetter

Anonymous said...

My eldest brother was diagnosed 4 months ago with stage IV esophogial cancer.It had already spread to his lungs and was considered inoperable. He was give 6 months to live.Several weeks ago he had trouble breathing and a sharp pain which he thought was the stent moving. At the hospital the tests showed that in fact he had blood clots in his lungs and both legs. After a week he was sent home on Lovinox. Since the stent was put in a month before he has not had any improvment in being ably to eat. Most things he vomits back up. In 4 months he has gone from a 6'2 200 lb man to about 100 lbs of skin and bones. He is now suffering from confusion , hallucinations and talks to those not there.He picks at himself, his clothes and pulls things out of the air. He can not talk much and he is withdrawn and falls to sleep every few minutes. Dr's told his wife today that these are signs its in the brain. The Dr's have not perpared her adn her sons for what is to come. They have no clue about the signs precluding death. I think they should be prepared before thier mother is at work and by brother hemorages out in his sons arms.
I understand why Dr's don't want to discorage the patients fight but there is no stopping what is going to happen and the family should be given the information so they can prepare themselves.

Anonymous said...

He may have not felt the reflux. Years of bending,leaning,lifting after eating can have the same effects

Anonymous said...

Please don't kick yourself! This cancer is so hard to diagnos! TVs commercials are constantly throwing antacids & purple pills...the little advice they give u at the end of the commercial ,( in fine white lettering, or the fast talking guy,) just doesn't Do justice to the dangers of hearburn! This is onr of the few cancers on the rise. It was more common in thr Asian countries, until about 8 years ago DON'T blame yourself,we just didnt know






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Anonymous said...

Did they Tell u What Camptosar is? Do u know if this was a trial?

Anonymous said...

`4 days before Christmas we got the final test results,our Mother has esophageal cancer,advanced stage IV.She had problems swallowing but we never thought it was anything so serious as this. The dr.has said it could be 2weeks or 2months and this is just too hard for us to believe. On Jan.12,2013 we celebrated her 80th.birthday and it is likely her last. I have lived with Multiple Sclerosis since the age of 18, in March I will be 60yrs.old and I know what it means to live with uncertainty,not knowing what MS will deal me next, but I just hate not knowing what is fixing to happen to my sweet Mother.We see her getting weaker, what else are we suppose to expect, what signs do we look for, how do we know when the end is near ?

Anonymous said...

My father was diagnosed May 15, 2012 with stage 2 esophageal cancer.

After 2 perforations in his esophagus, perforation of his trachea, 2 cover stents, feeding tube...

He passed away last Saturday, 2/16/13. This illness is the worst. My heart is broken and I pray for all cancer patients.

God bless you!
GB

Anonymous said...

My father ,61 years old, wasmt diagnosed with andocarcinoma, stage 4 esophogeal cancer in december 2012. Doctors said the lymphnodes around the tumor, just below his belly buttin to his collar bone have been infected. Hes a smoke and an alcoholic. He had hepititics C and after doing an experimental trail with chemo, was 100% cleared of it a year ago. His body has been rexovery from that ever since, so he didnt pay a close mind to the symptoms of the cancer, thinking his body was still getting back to full health. I am very afraid. hes on a liquid diet and some days he can barelt get water down. Hes starting a 2 week radiation this coming tuesday, and assuming the radiation helps he will start chemo. The doctors have already said its incurable, and are not aiming to beat the cancer, so.the chemo treatments will not be hard and heavy. They want to.give him quality over quantity of life. Hes on painkillers and is stuggling with the addict in him. I have no idea what to expect. How long he has, when he will go and how he will go. Im wondering if anybody can give e any information on what to expect in his final days, any signs that hes going to pass amd how he will eventually pass from this disease.

Anonymous said...

My Dad has recently been diagnosed with stage 4 andocarcenoma and the doctors are sayings it incurable because the lymphnodes from his collar bone to his belly button are infected. They are radiating the tumor and then after ward are giving a light (for lack of a better word) chemo.treatment. They said they rent hitting him hard with it because it will only make him sick and either way hes going to die so they are just looking to give him quality over quntity. should we push for a fight? The doctors are giving off that theres no vhance, did they do that with you too? Did you push for harder chemo? Idk if we just lay down our guns and walk away, or if we fight even though its so badly against the odds.

Anonymous said...

My dad has esophogial cancer. He was diagnosed with it about two years ago. I am very concerned because he is to the point he can not walk anymore. He is very weak and I have to pretty much everything for him. He can no longer stomach food, so I think he is going to need to get a tube in his stomach again so he can get nutrition. My dad looks like he has aged at least 25 years in 2 years. I am very concerned for my dad. He is on his last type of chemotherapy that he can take

Anonymous said...

My sister was diagnosed with stage 3 oesophageal cancer Nov 2008 - pretty sure it was andocarcinoma, as two thirds of her lower oesophageous was removed and her stomach moved up into her chest). It was probably due to the smoking, alcohol and stresses she had in her life (was 40 when diagnosed). We live in Hamilton, New Zealand and went to Waikato Hospital.
Unfortunately she was misdiagnosed by her GP early when she had eating problems (she got told it was just a bit of acid reflux and to take antiacid pills. It wasnt until later (about a year later) she couldnt eat at all...went to the hospital and they too misdiagnosed her.
About a year and half later they did a biopsy (of her trachea - perforating it!) and got told she had cancer - almost 2 years too late!!
So, had 2-3 rounds of chemo, operation, bout 6 rounds of chemo. She lost almost 20kgs and she was only about 64kg to start with. Then she couldnt take the last chemo any more so had pills.

Thankfully her youth, positive spirit, and dogged determination has given us 4 years (the last year has been great!). She was having scans every 6 months, then she had every 3 months once she was exhibiting some pain in her back. Unfortunately the hospital missed giving her the results of her 3 month scan until 5 months later, by which time her prior scan showed her cancer had shrunk ? a little. It seemed that was because the cancer had moved to the outter lining of her bowel.
I think had we had the scan on time it may have made a difference.

At the time of writing this she has been told there is nothing the hospital can do for her, apart from radiation to help with the pain that is coming from stage IV oesophageal cancer.
She has gone fishing with her husband who she married just Jan 2010 and her two boys are with her (including the fiance of the eldest boy - 26). The youngest one (who is 21 this year) is really struggling with it as my sister brought us these two boys on her own - two different fathers - not her husbands boys).
We are hoping she will continue to fight this silent killer...but intend to spend as much time as we can with her as possible. Perhaps this disease needs to become more of a focus in the public eye...acid reflux/barrents sydrome may turn into something else before much can be done.
The positive thing about this disease is that at least you can plan to have as much time as possible - unlike those who are taken quickly in car accidents or violence etc.
By accepting death as a part of life it has given me a much better view of how we are affected.
My suggestion is talk more about death...we all WILL die, it is only fear that makes it harder for us all to deal with. And LIVE like there is NO tomorrow - none us know when our time will come. LOVE each other every day, and be thankful for the times we have with each other.

She may only have months to live now - we dont know, but we are going to do as much as we can with her, have fun, enjoying as much as we can with her.
Be safe, have fun, live, love and a huge amount of love to you all and your families that have experienced this in your family.

Anonymous said...

I'm in the same boat mum 88 with stage four stopped treatment and at home.dad 91 and both have no idea of path ahead, so hard but doing the best I can. Mum on liquids and pain patches hospice at home on board,they don't know what's hit them devotedly married for 68 years a day to day situation but so hard.

Anonymous said...

I'm in the same boat mum 88 with stage four stopped treatment and at home.dad 91 and both have no idea of path ahead, so hard but doing the best I can. Mum on liquids and pain patches hospice at home on board,they don't know what's hit them devotedly married for 68 years a day to day situation but so hard.

Anonymous said...

I am 68 years old and had Hodkin;s Disease stage 3 in l983 and again in l985-Stage 5 . They radiated everything but my toenails and then dumped chemo on top of that. I thought that was the end but I survived. Then two years ago I got breast cancer and had to have a double mastectomy. Now I'v e been diagnosed with Barrett's syndrome and after reading all these blogs, if it turns into cancer, I will not go through radiation or chemo again--docs can't do it anyway as I've had too much in the past. I'm just going to check into hospice and let it go =no stints, no nothing. But nobody on these blogs has answered any questions about pain management or ever hurry up the process-why can't doctors do this for humans, dogs and cats get treated better when it's time for them to go. I know people do not like to take about this--keep the faith, you'll get better, etc. but the realty is, it obviously doesn't get better. I wish someone whose loved one has died from this, has some suggestions on the above comments

Anonymous said...

I am 18 months post operative following a diagnosis of eosophageal cancer. I had an oesophagectomy and partial gastrectomy and my stomach is now in my chest. I have some problems with my left lung due to pressure from my stomach and some heart problems and deafness due to chemo but I am still here. I sleep sitting well up and eat most things but in very small amounts so I am doing well just the last 3 weeks I have been having lower back pain and I see my doctor next week about this, so keep your fingers crossed. I enjoy life, I am now 73 and I was diagnosed in June 2011, treatment was started immediatly in Nottingham England. I am so lucky that my surgeon was so good at this procedure. God Bless all of you out there on the journey and those family members who are living it too. Thanks to my husband daughters and son I had wonderful support. KEEP POSITIVE.

Anonymous said...

My daddy just died of esphageal cancer. he was only diagnosed 3 or 4 months ago .. he took 3 weeks or extreme radiation and chemo by mouth while doing the radiation . was off for 3 weeks and went back for 2 more weeks of it. he could not eat before the treatments and then it was supposed to have been in remission and shrunk but the chemo is what killed him. made him so sick and he kept getting dehydrated from not even drinking anything and his body just failed to recover from all of it. and then less than a week after his last treatment a scan was done and it had spread all over. he died within the next 72 hours. it spread like wildfire . I am suseptable to this same cancer and I dont believe i will do the chemo ..it kills everything in your body and really what good did it do! RIP daddy. Cancer .. why cant we find a cure :(

Anonymous said...

My dad died April 4th 2012 aged 68 from this bitch of a disease. He had been diagnosed with 'inoperable esophageal cancer' about 4 months earlier and up until mid February, when he wasn't in the hospital getting his cycles, he didn't look in the slightest as if there was anything wrong with him. Then he really went downhill. He started not being able to remember how to operate his mobile phone but the very last week was especially bad, as he completely lost his ability to talk and would just mumble things to us. I knew he was going to die but I wasn't ready for him not being able to tslk to us until he finally passed. One of the nurses told me that, in her opinion, esophageal cancer was the worst one of all (he spent his last 2 weeks at the palliative care department of a hospital so at least he got all the morphine that he required).

Anonymous said...

My husband passed away in February 2013 from Esophageal cancer. He was 49. Diagnosed only 8 months prior with Stage 4. Unfortunately it was caught too late. Inoperable and spread to the lymph nodes and eventually the brain. He received chemo and palliative treatment towards the end. For many years he suffered from GERD and a hiatal hernia. After some research and working closely with Dr. Bart Frazzitta of Memorial Sloan-Kettering (ironically an esophageal cancer survivor himself), we learned that these conditions were closely linked to esophageal cancer. We never thought that typical heartburn he suffered for years can lead to this. He fought a good fight but eventually succumbed to his battle. For anyone continuing to fight this battle; stay strong and keep up the fight. Many Blessings.

Eva Morgan said...


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Anonymous said...

Three years ago my father was first diagnosed with stomach cancer
He was sent on to the Mayo Clinic in Rochester MN Further tests also showed a different type of cancer in his right lung. Surgery was done on both, as well as the esophagus, as cancer was found in the nodes there also. He had a feeding tube installed. He was unable to do chemo or radiation at that time as he was just not strong enough to endure it.

He regained his strength and the feeding tube was removed. He remained some what healthy, although he was never the same as before this major surgery.

Last year cancer was again found in his lung. This time he had 5 days of radiation.

This year, tests showed the esophageal cancer had spread to his lung, liver and below his diaphragm. He so far has had 6 rounds of chemo, and is scheduled to continue these on thru November.

He is a white male, was never overweight, but has had stomach ulcers and/or acid reflux for most of his adult life. His father also had stomach ulcers and died from colon cancer.

It is hard to watch him dealing with this disease. We were told this cancer will kill him. I only hope and pray it will not be an awful way for him to leave this world.

Two of my brothers also have trouble with acid reflux, and my daughter was just diagnosed with acid reflux also.

For those of you who are dealing with this personally or thru a loved one, may you feel God's love and grace.

Anonymous said...

I'm so sorry your father is going through this. I was diagnosed seven weeks ago with stage four small cell neuroendocrine cancer in the esophogus, liver, and lymph nodes. They gave me three to four months to live. I still look and feel like myself. There is no treatment for me. Hospice comes to me although I still go out with friends and family and plan to go to Florida for ten days soon. I'll return to NYC in time for my next doctors appointment. The oncologist follows me more for moral support, I think, since there is no treatment, no feeding tube, no stent, no chemo. We all agreed to this since this is the same team of doctors that handled my husbands esophogeal cancer eleven years ago and he died two weeks after diagnosis from a pulmonary anoirism following surgery. He was 63. I am 67 and I didn't want my family to go through the same thing again. I'm not afraid of dying. I very afraid of the pain that may be coming. Has anyone else not had treatment for this? Do you know what I can expect?? The hospice nurse says they can keep me pain free. Who knows.

Anonymous said...

The pain has become very severe these past four days. The hospice doctor, who has never met me, seems too conservative with medication I have metal rods in my spine so I am used to a lot of pain. The hospice promised I wouldn't have pain. But it is unbearable. The oncologist says to take much more of the oxycodone but if I finish the prescription then I won't have any pills and now I have to get the pills from hospice. This isn't working for me. I've contacted the hemlock society to learn about their ways. I'm at a loss. I only asked to be pain free. The hospice isn't helping even though they mean well. What should I do? Because I don't take any treatment, I have no one to turn to except hospice. I need help with the pain in my stomach and under my rib cage. Any suggestions? Please answer ASAP. I'm desperate. Thank you. I'm the one who wrote on September 15th.

Herman Kattlove said...

In these situations, hospice should provide adequate pain control. In my experience, they would use an infusion of morphine given under the skin. Suggest this to them.

Anonymous said...

Thank you so much for your suggestion. I ended up calling my oncologist and he called the hospice doctor in my behalf and told her to use a'patch'. It arrived last evening and this is the first morning I'm waking up pain free. But I have decided to stop eating since the pain comes back in a rush after ingestion of any foods. I went back to being able to swallow because the tumor in the esophagus shifted. The oncologist says it probably just grew and pushed lengthwise. ( I had thought maybe it had disappeared). But with headaches and lumps in my breast, I guess it's spreading rapidly. I still want to leave for my Florida home this Sunday and, G-d willing, return on October 2 for my oncologist appointment on October 3rd. Thant man has been a godsend to me. I will also ask about the

Anonymous said...

Sorry, I fell asleep and must have pushed the send button. I may want to explore hemlock society. Does anone know about that? I don't know what to do but I cannot endure the pain I've already experienced. I'm supposed to ask my hospice if they do 'palliative sedation'. I am so scared.

Anonymous said...

It's me again. No one seems to answer me so I answer to myself. I'm in Florida this week and my Calvary hospice in NYC has transferred me to the Hospice by the Sea in Florida. Actually, my father had died in this hospice in 1991 from prostate cancer metastasized to his bones. They have been very helpful to me these past few days with coming in the middle of the night and explaining that I'm now ready for some morphine under my tongue when pain gets this great. They too say I shouldn't be fighting them so much but should be taking the pain medicines ahead if the pain. Apparently that makes a big difference. They are right. I went for six or seven days of constipation before I finally asked for help. I cannot do this on my own. I do need to accept help. And everyone wants to help me. I see that now. I want to enjoy good days with my family then I'll return to NYC on October 2nd. I'm trying to live my best life now and as pain free so I can enjoy family and friends for as long as possible. I feel so much love and understanding for everyone now. Everyone always saw me as a really good person always but now I feel like a real Pollyanna; I can find no fault with anyone. We are all little gems of perfection!

Anonymous said...

My brother in law was diagnosed with esophageal cancer a couple of years ago. He underwent surgery and was cancer free until February of this year. He has been undergoing radiation and chemotherapy. He starting getting fluid around his lungs and had to be admitted to the hospital. They found cancer cells in the fluid and he has now been diagnosed as state IV. He recently had fluid around his heart that they had to relieve. They have stopped treatment and he has gone home for Hospice care. The doctors say that they can't say whether he has a day, week, or month left. Is the fluid around the heart a tell tale sign? How much time do we have left?

Herman Kattlove said...

The fluid is just another sign of spread and as long as his doctors can remove it it won't be life-threatening.

Anonymous said...

Hello dr Kattlove your blog has been wonderful for me. Thank you. I believe that the truth is so important to me now. I want to know everything as it happens. My son wants me back in NYC this Wednesday as planned. I was hoping to stay in Florida until this weekend since I love it here and I want to fix up the new house a little more but son says its enough. Anything else is for renters who won't even enjoy it anymore. He right if course. It's just my pleasure to do it. But I'll go home Wednesday as planned. I can't control everything. I'm one to two months away from dying now. I have seen dead people late at night. Maybe that's a sign. Has anyone else experienced this type of thing? They have been strangers so far. Not my husband yet. I don't know if I believe in this type of thing but the people are very real. They just look at me.

Anonymous said...

I find I cannot sleep. Even with the tamazapan. I am already into my 30 to 60 days until death. The y could be wrong and yet I feel it within in my body. Headaches now so it must be in my brain by now. Forgetful. Occasionnlly issoriented. Obviously I don't drive since the initial diagnosis nine weeks ago. Ll return to the ny apartment on Wednesday. No use scaring my son by staying here in Florida. Are the very bad symptoms sudden or more gradual? Wish I knew what to expect. No one seems to share details here. Btw, does anyone know how to get the most recent posts first and then reads nakwards? That woulda save te and be helpful. Does anyone belong to a group in NYC or is it a totally solitary endeavor?? Thank goodness at least for this blog. At least. I am a psychiatric social worker by education. But I sold life insurance for twenty five years. Both helping professions. But now I'm just a patient who could use some help. Dr. Kasslove, do you ever hook a few patients up? I live on the upper east.side not far from Atlantic grill. Thank you for your continued support. Della

Herman Kattlove said...

I have no connections. I would suggest that you contact a hospice either on your own or through your physician(s). Good luck.

Anonymous said...

Thank you for all your help doctor. I'm having an MRI if the brain tomorrow morning since I seem to be going blind and I want to know if cancer has metastasized to my brain. Still will have no treatment though. I've been turned down for trials. I guess it's pretty advanced in me. Don't know if my eyes will let me write much longer. Everything is a blur. My family and friends are just wonderful though. I'll keep trying to have someone write for. Me. It helps me to feel connected. I love being alive and I've been blessed with a life I've loved living.

Anonymous said...

To give some hope out there, my dad was diagnosed w/ esophageal cancer 28 years ago. Had chemo, radiation & surgery where part of his stomach was cut out. A few years later he had another round of radiation.He's now almost 80 and having several health issues. With that said, his ability to eat normal meals was never the same & lost so much weight that he's a mere skeleton of himself. He is never hungry nor has hunger pains. The malnutrition has caught up with him. Definitely suggest eating several small healthy meals thru the day. Best of luck to those struggling with this cancer, stay strong!

Anonymous said...

My husband was diagnosed with Esophageal cancer in mid January. A tumor in the hip brought attention to the Esophageal cancer. We were shocked. He has still got a good appetite, but has lost a lot of weight. If he maintains his weight he will look good. He never addressed heartburn as he should have. He stopped smoking 14 yrs ago and not a heavy drinker. We have high hopes even though the prognosis is not good. I would like to hear more blogs where men live up to five years. I can't believe he will succumb to this quickly. He is getting strong chemo and tolerating very well. He is getting radiation for the mass in hip. He had to have a rod put in his femur. We believe God can give him time. This is our high hope...at least a few more years! Any thoughts...Dr?