Is there hope if someone has stage 4 B Esophageal Cancer

Kathryn Rogers

Hi Everyone- I am posting here for the first time and would love some feedback about the course of this disease and if there hope for my beloved husband.
My husband Paul was diagnosed with Stage 4 B Esophageal Cancer in early April. We were living in the Syracuse area of NY but moved to Massachuesetts where we are originally from so we could be closer to family, friends and Massachusetts General Hospital in Boston.
My husband was admitted to a hospital in Syracuse on April 11th in NY where they told us the tests they ran showed he had cancer on 2/3rd of his esophagus, most of his stomach, in his abdomen, lymph nodes and that a tumor had essentially broken his C7 vertebra which is what was what was causing the pain that sent him to the emergency room initially. They basically told us there was nothing that they could do so I went on line and got information about several other options. Massachusetts was the obvious choice for us because we have 13 year old twins and while in NY lived abut 45 minutes away from a hospital with a decent Oncologist or Cancer treatment area. So, we packed up and moved in with my husband's sister so we could get him the care he needs.
His first week in Mass General were very rough as he lost almost 15lbs because he was never able to eat because they were so many tests etc. After all the tests they did were completed, his Oncologist met with us and told us he is terminal and without chemo he has about 8-10 months and with successful radiation and chemo about a year. He opted to do both, and had 10 rounds of radiation which he tolerated well initially but caused complications of his throat closing up so he had to have a stent put in which delayed the Chemo by almost two weeks. At this point he has had 2 rounds of what I believe is called Folfox 5FU. He seems to be tolerating that reasonably well too but he hasn't had any more evaluations yet.
I don't know what to believe in terms of having any hope that he can beat this or have it slowed down. I have several friends tell me they've known people with a stage 4 cancer that have survived and are alive and well. But the Doctors have basically told me there is no chance he will survive beyond a year because his cancer has spread to other organs and he has so many complications.
With two young teens and other challenges including financial issues this situation made worse etc, I don't want to hang on to hope if there is none. I am a huge believer that attitude can and does play a huge part in healing. But, my husband has said on more than one occassion that "he is dying." He also has suffered doubts of depression and is not a generally "positive" person to begin with. I have tried to influence him by reinforcing his belief that he can get better or at least slow the process down. He doesn't seem to want to hear his as he has more or less accepted that there is no hope and yet he elected to do the chemo. The Dr. even stated before he started Chemo it would be perfectly reasonable to change his mind as it could shorten his life because he had already experienced several complications. But he stated he wanted to try because he wanted to be around to witness our children's milestones. I didn't press him on this because I didn't want to discourage him at all.
Anyway, I am very confused and would dearly welcome any input. Kathryn Rogers

jojoshort

Hello Kathryn
I'm a stage IVb wife, too. Living just north of you there in MA. We, also, went to Mass General for some initial staging when my hubby was diagnosed. My husband found his cancer had spread to his lungs.
We also did FOLFOX 5FU. Six sessions, starting in late January. After the 3rd session, the side effects became more and more prominent, and my husband opted to halt that particular brand of chemo. Doc switched him to Irinotecan and Platinol, but the Platinol is tough on kidneys, and so he had to drop to just Irinotecan for the second session of the new chemo. No radiation was offered, as my husband doesn't have a well-defined tumor, but rather his esophagus has developed cancer cells along a good portion of it, too.
We tried this route because we were hoping that he would be one of those folks that have a splendid response to the chemo. I have seen others who have had their cancer shrink and even a couple who have gone into what appears to be a remission. Unfortunately for my husband, his cancer was just on the "pause" button. Now that he has decided to stop chemo because his quality of life was not good, the cancer will and is having its way with him.

I totally understand your pain. We have two wonderful young adults in college. My husband is only 54, and I am 52.

Yet, there is an understanding of just how aggressive this cancer is. We both understand that at this point, 9 months after first hearing he had cancer of the esophagus and 8 months after finding out it had spread to his lungs, that it is literally a measure of time, and we are trying so hard to make it a quality time. He is writing his "last lecture" to his children so that they will always have his hopes and dreams for them even after he's gone.

We are fortunate to have an oncologist who was honest right from the start of what his chances were: nil. So we knew we had to balance some treatment to try to slow down the cancer against the side-effects that treatment can bring. At this point, he is still able to get around and do enjoyable things on a lot of days, but not always. He feels tons better after stopping chemo--well, until the disease started picking up steam again.

I know this isn't the message you wanted to hear, but I can only relate what we've seen with Stage IVb. All Stage 4's aren't the same. Esophageal cancer is not the same animal as other cancers. Some people have an excellent response, others not so much. I've heard time and again how someone has beaten cancer, but it looks like we made the right decision to enjoy what time he has left rather than grasping at straws. If your team at Mass. General is telling you straight out what they think, well, you know the reputation of that hospital. One of the best in the world.

Feel free to message me, and peace to you and your family at this most difficult of times.
jojo

nancyann3

Very sorry
I'm very sorry for your husbands diagnoses. EC is a monster, but hope is always there.
I know what its like to deal with a, less then positive attitude, husband. Makes it difficult for the caregiver to know how to help. You ask your self often "do I help this person to live or to die"?

Mine was diagnoses in feb 2010 stage 3. Went through 2 rounds of chemo and radiation which lasted a year. He had blood clot early on break off and mulitple pieces of it travel to both lungs. He has three stents during that year. We delt with them moving and causing problems. In feb. 2011 we had the surgery as scans showed all cancer was contained to local area and the radiation had eliminated the tumor inside the eshophagus. In may we had the 3 month post surgery scan. It showed mets to spine and rib and possible other areas. We are now back in radiation for spine, hopefully to help with pain.

I use my hope to keep me going. To endure the less then positive husband And to endure the mixed signals you get from them. On one hand they go to their treatments and want to continue them, but on the other hand they dont do the preventative care to keep them strong enough to endure the treatments. Its hard to figure them out sometimes.

Each survivor is different. Each cancer is different. But hope is always there.
You will be hearing from a lot of good people here. Many experiences. Many happy stories and sad stories. We each take it all one day at a time. We lean on each other and draw strength. Come here often. This site helps the survivors and the caregivers.

Take care
Nancy

oriontj

Hi
My husband was diagnosed with in between III-IVa...He had one lymphm node that tested postive in July 2009. You're reading this correctly. He is treated at the U of Chicago Advanced Center for Medicine. They hit him with the big guns...and he was in a clinical trial for his first chemo..every week for 6 weeks...Taxol, Cisplatin and the trial drug Erbitux. That Decemeber he had no active cancer. We went to Alaska last summer, in fact a year ago. The cancer made a reappearance Dec 2010..in the same place. He was told no surgery. They are very conservative at the U of C. So he's being doing that since Jan.

He's had sensory periphal neuropathy but has managed with PT to golf. Just went today. We'll see what the scan says in July. His doctors never told us he was terminal, not at all, they were going for a cure evenwithout surgery. So we take it day by day.

Hopefully your husbands issues will resolve. Mine never talks about it but is very postive. Right now I run around and get things for him if his legs are tired. I owe him that...I had 3 knee replacements for two knees and he was my legs for awhile.

jan

Unknown

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chrissiebass

unknown said:

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My dad is also diagnosed
My dad is also diagnosed with stage 4. I do not post much here, but read it everyday. He has been doing chemo, as surgery and radiation is not an option. At his Dr. appt yesterday they were happy with his results, it has shrunk the tumor, and no new growth that they seen. This is good news, as we know he will never be cured. The Dr. said he will not get his "break" from Chemo as originally thought, so he will go every other week as long as his body and him are able to tolerate it. The only side affect he is getting is very tired. There are so many "wise" people on this board, that can and will give you some advice. I am thinking of you, your children and husband. It is such a sad thing, but has really put my and my families life into perspective for us!! GOD bless and watch over you and your family.

mrsbotch

jojoshort said:

Hello Kathryn
I'm a stage IVb wife, too. Living just north of you there in MA. We, also, went to Mass General for some initial staging when my hubby was diagnosed. My husband found his cancer had spread to his lungs.
We also did FOLFOX 5FU. Six sessions, starting in late January. After the 3rd session, the side effects became more and more prominent, and my husband opted to halt that particular brand of chemo. Doc switched him to Irinotecan and Platinol, but the Platinol is tough on kidneys, and so he had to drop to just Irinotecan for the second session of the new chemo. No radiation was offered, as my husband doesn't have a well-defined tumor, but rather his esophagus has developed cancer cells along a good portion of it, too.
We tried this route because we were hoping that he would be one of those folks that have a splendid response to the chemo. I have seen others who have had their cancer shrink and even a couple who have gone into what appears to be a remission. Unfortunately for my husband, his cancer was just on the "pause" button. Now that he has decided to stop chemo because his quality of life was not good, the cancer will and is having its way with him.

I totally understand your pain. We have two wonderful young adults in college. My husband is only 54, and I am 52.

Yet, there is an understanding of just how aggressive this cancer is. We both understand that at this point, 9 months after first hearing he had cancer of the esophagus and 8 months after finding out it had spread to his lungs, that it is literally a measure of time, and we are trying so hard to make it a quality time. He is writing his "last lecture" to his children so that they will always have his hopes and dreams for them even after he's gone.

We are fortunate to have an oncologist who was honest right from the start of what his chances were: nil. So we knew we had to balance some treatment to try to slow down the cancer against the side-effects that treatment can bring. At this point, he is still able to get around and do enjoyable things on a lot of days, but not always. He feels tons better after stopping chemo--well, until the disease started picking up steam again.

I know this isn't the message you wanted to hear, but I can only relate what we've seen with Stage IVb. All Stage 4's aren't the same. Esophageal cancer is not the same animal as other cancers. Some people have an excellent response, others not so much. I've heard time and again how someone has beaten cancer, but it looks like we made the right decision to enjoy what time he has left rather than grasping at straws. If your team at Mass. General is telling you straight out what they think, well, you know the reputation of that hospital. One of the best in the world.

Feel free to message me, and peace to you and your family at this most difficult of times.
jojo

hello Jojo and kathryn
My name my name is Barbara and my husband Vince passed away this past feb from Ec. When I read both of your reports I just had to answer you. I have tried so hard to stay off this site as there are so many newbies coming on but I really do believe that if you are lucky enough to get a dr to tell you the truth about the cancer you are better off. We never had that and I always held out for the big guns and more aggressive chemo. Unfortubately it only hurt my husband. That was his one regret. Stage 4B is very bad for most people. LU seems to be our miracle girl and she is the exception to this beast at that late stage.
I am so sorry for both of your families.This deisease is very agressive and it is very hard to come thru. I am just being honest. I wish our oncologist had never sadi. "We will get Vince back to the way he was" He gave us terrible false hope and the chemo destroted my husbands body. At an early stage there is ALWAYS hope.
I do not want to be doom and gloom but this is one hell of a cancer and it has destroted too many people. Do what your heart tells you to do and God Bless all of you


Barbara

Daisylin

chrissiebass said:

My dad is also diagnosed
My dad is also diagnosed with stage 4. I do not post much here, but read it everyday. He has been doing chemo, as surgery and radiation is not an option. At his Dr. appt yesterday they were happy with his results, it has shrunk the tumor, and no new growth that they seen. This is good news, as we know he will never be cured. The Dr. said he will not get his "break" from Chemo as originally thought, so he will go every other week as long as his body and him are able to tolerate it. The only side affect he is getting is very tired. There are so many "wise" people on this board, that can and will give you some advice. I am thinking of you, your children and husband. It is such a sad thing, but has really put my and my families life into perspective for us!! GOD bless and watch over you and your family.

stage IV B
My husband is also stage IV B, and from the start the doctors have been brutally honest with us. We still found ourselves hoping for a miracle.... (who knows, anything is possible!) We were given absolutely no positive possibilities, and were told that without treatment he has 6 months, with treatment 9-18 months. As I'm sure everyone is, we're hoping to beat the odds and have Lee become the miracle boy, living to a ripe old age.

Since this horrible journey began in January of this year, the only negative has been the side effects from chemo. (yup, the big cannons) His swallowing has been fairly good, just the odd thing getting stuck lately. Now that he's on a chemo break, he's feeling very well, just a bit tired at times. His future chemo treatment is something we are still deciding on, and all the postings here have been very helpful in guiding us in the direction we're going to choose. We are not giving up, and we are going to fight till we can't fight any more. From what we've read here, the chemo seems to be more detrimental than the cancer itself. On the other hand, we don't want to wait too long and have the cancer spread...... We are going to enjoy the summer and get some travelling and relaxing done before we make the decision to go back in treatment.

I won't get into the details again, I've posted several times lately, and also if you haven't read any of my posts, I have a fairly extensive profile page, which details chemo, side effects, a link to Lee's blog and our time line so far.

Wishing everyone all the best, believe in the power of positive thinking! Miracles happen every day, don't give up hope until it's clear that all hope is gone!
Chantal

fredswilma

Hello Kathryn
I am so sorry
Hello Kathryn
I am so sorry for you and your family, I am also a stage 4 wife and carer, my husband was diagnosed in Aug 2010, he has had one lot of chemo so far, a total of six sessions, he tolerated it very well, which has given him a couple of good months, however the cancer is growing and spreading so we now have to consider more chemo and if you have read lots of posts here this is a tricky one. We have been fortunate our Doctors were very honest with us from the start, (we didn't believe them of course), they have said with this next round of chemo if it becomes too much for Mark, we can just stop, we are hoping he will again tolerate this well, and maybe slow down the growth and spread. Mark wants to give it a try because we have a young family and he so much wants to be there for them, he is writing a letter for his kids so if the miracle we so pray for doesn't happen, then they have something of him and his thoughts and dreams for them. Hope is something I think everyone needs just what you hope for changes, My hope for Mark is that he is with us for as long as possible and as well as possible, I know you might not want to hear this but stage 4 is terminal, the only thing we can do is live it to the fullest every day.
You will be in my thoughts and prayers.
Ann

lindadanis

Hope I can help
Dear Kathryn, first let me say that I am also from Massachusetts. My late husband, Ed, was diagnosed with stage four e/c cancer back on October 7, 2009. He had met to his liver, stomach and pelvis right from the start. After doing chemo for seven months, he developed mets to his brain, in which, he decided to do whole brain radiation. The radiation did nothing to the cancer, in fact, it even grew bigger. I decided not to tell my husband that radiation was a total waste of time because after doing four weeks straight of whole brain radiation, he was a totally different man, he could not even walk up to his bedroom, he stayed on he second floor until he passed away. Th first three rounds of chemo did nothing, in fact, the cancer even grew then, the oncologist changed up his chemo and he did three more rounds, which in fact, it did do something, the cancer had stopped growing and we thought we were on the road to recovery, until the brain cancer appeared a week later.

It was a roller coaster to say the least, we were up/down all the time. My husband was extremely depressed from the day he was told he had cancer, the original oncologist told him he had less than six months to live, nine to twelve months if he did treatment but that treatment was always "pallative", not a cure. I use to be on this site daily as there were many many people who helped me everyday try to keep sain during this terrible ordeal.

I don't know what to tell you but I felt so bad as I was reading your post. You sound like "me" back two years ago. My husband lasted eleven months, he passed away nine months today, September 15th at South Shore Hospital in Weymouth, Mass. We also saw doctors at Dana-Farber and they basically said the same thing to us.

I do not think that treatment helped my husband nor did it help our family. We have one daughter, age 22 back then, and the stress of this horrible disease coupled with going to chemo everyday, back and forth, watching him sick as a dog, crawling out of bed to get there, hiding in his room when he got back, was a huge amount of stress on him as well as myself and my daughter.

Looking back, he made all the decisions and I prayed that they were the right ones. I do not know how long he would of lasted without treatment but I think his quality of life would of been different, I don't know. This cancer is different from alot of cancers, the poor victims of this disease rarely find out that they even have e/c cancer until it is stage three or four because there are no really big symptoms.

Everyone is different, everyone has to make their own decisions. This is something that I have accepted over the past nine months, the cancer made my husband so mad, he barely had a moment in his last nine months, that he could not think of anything but cancer.

I hope I have helped you in someway. You can always p/m me is you prefer., I hope I can help you out.

Linda

Cometsmom

lindadanis said:

Hope I can help
Dear Kathryn, first let me say that I am also from Massachusetts. My late husband, Ed, was diagnosed with stage four e/c cancer back on October 7, 2009. He had met to his liver, stomach and pelvis right from the start. After doing chemo for seven months, he developed mets to his brain, in which, he decided to do whole brain radiation. The radiation did nothing to the cancer, in fact, it even grew bigger. I decided not to tell my husband that radiation was a total waste of time because after doing four weeks straight of whole brain radiation, he was a totally different man, he could not even walk up to his bedroom, he stayed on he second floor until he passed away. Th first three rounds of chemo did nothing, in fact, the cancer even grew then, the oncologist changed up his chemo and he did three more rounds, which in fact, it did do something, the cancer had stopped growing and we thought we were on the road to recovery, until the brain cancer appeared a week later.

It was a roller coaster to say the least, we were up/down all the time. My husband was extremely depressed from the day he was told he had cancer, the original oncologist told him he had less than six months to live, nine to twelve months if he did treatment but that treatment was always "pallative", not a cure. I use to be on this site daily as there were many many people who helped me everyday try to keep sain during this terrible ordeal.

I don't know what to tell you but I felt so bad as I was reading your post. You sound like "me" back two years ago. My husband lasted eleven months, he passed away nine months today, September 15th at South Shore Hospital in Weymouth, Mass. We also saw doctors at Dana-Farber and they basically said the same thing to us.

I do not think that treatment helped my husband nor did it help our family. We have one daughter, age 22 back then, and the stress of this horrible disease coupled with going to chemo everyday, back and forth, watching him sick as a dog, crawling out of bed to get there, hiding in his room when he got back, was a huge amount of stress on him as well as myself and my daughter.

Looking back, he made all the decisions and I prayed that they were the right ones. I do not know how long he would of lasted without treatment but I think his quality of life would of been different, I don't know. This cancer is different from alot of cancers, the poor victims of this disease rarely find out that they even have e/c cancer until it is stage three or four because there are no really big symptoms.

Everyone is different, everyone has to make their own decisions. This is something that I have accepted over the past nine months, the cancer made my husband so mad, he barely had a moment in his last nine months, that he could not think of anything but cancer.

I hope I have helped you in someway. You can always p/m me is you prefer., I hope I can help you out.

Linda

All support to you and your family

Your situation mirrors ours. My husband was diagnosed in early April, the 4th.  My husband's first round of chemo put him in the hospital for a week.  He said he wouldn't try it again but ended up agreeing to a reduced of new meds.  He had his second dose yesterday. The first two days are usually good but then the mouth sores, etc start and he's in pain.   It did shrink the tumor though because he's able to swallow now whereas before that, when he was diagnosed, he couldn't handle his own saliva.   Even though he has a feeding tube in place, he's been able to skip the nighttime feedings for a couple weeks now. He's got mets to the liver, nodes and diaphragm.  Sorry to dump all that on you!  My intention was to let you know I get it and pray for your family.