ECF chemotherapy treatment

marilynvp47
marilynvp47 Member Posts: 10
edited March 2014 in Esophageal Cancer #1
My husband was recently diagnosed with esophageal cancer and is now undergoing chemo treatments. I would like to know about the side effects of this type of cancer.

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • marilynvp47
    marilynvp47 Member Posts: 10
    #3
    Dear Bill and all of you who have had a part in sharing your stories.
    Bill, I would like to thank you so much for your response, and also for getting this discussion board started. Your story has given me hope and courage to go forward! You're right Bill, I have been on every link and every site with info. on esophageal cancer known to man!

    I am new here, and I have already found a 'comfort level' just by reading all of your experiences and discussions.

    My husband, 58, was diagnosed with esophageal cancer on March 10, 2008, Stage 3,'several lymph nodes'and 0-M. The doctors also found several 'suspicious' cells on other organs as well. Since then, he has had 3 rounds of ECF, epirubicin, cisplatin, and 5FU, which is in a pump contained in a 'fanny pack' dispersing chemo 24/7. He has completed the EC part of chemotherapy, but is still on the 5FU until this Friday. His last CT scan showed all suspicious cells appeared to be gone and his malignancy has shrunk. His tissues around the esophagus area appeared to be getting 'soft' again, which is wonderful! He has had many side effects but has handled them ok. We saw his surgeion yesterday, and he is scheduled to go in for 4 other tests next week. After that, they will schedule him for surgery at Northwestern Memorial Hospital in downtown Chicago. My husband does not want to read any information regarding his illness or his surgery. I, on the other hand, can't get enouph info. I have read the brochure the surgeon gave us regarding his procedure and realized the long jorney he will be on. I know many of you have been there and are doing quite well now! I look up to all of you who have or are going, down this path, as I can't imagine the strength you must have. My prayers are with all of you and your caregivers daily, and I wish all of you good luck on this difficult road.
    My husband has a strong mental attitude and a wonderful support group. I am a very strong person, thank God, as I have seen my Father, Sister, Aunts,Father-in-law, and several dear friends fight cancer.
    If anyone can give me tips on what it will be like for my husband, when he comes home from his surgery, and if I need to find people to be with him while I'm at work, I would appreciate you letting me know. I'm thinking he would need to have assistance almost constantly, at least for a while.
    Again, I thank you Bill, and all of the wonderful and courageous people I have 'met' on this board. You are an inspiration to all of those going through this illness and also to all of the caregivers as well!
    God Bless you
    marilynvp47
  • judyloo
    judyloo Member Posts: 40
    #4
    Marilyn - my husband had the esophagectomy in April and has been home recovering since; he hopes to go back to work the end of June! I took the first 2 weeks off when he came home to be with him and the visiting nurse/physical therapists the insurance company covered were a great help. Boy it was fly by the seat of your pants time for us - learning to crush meds and put them thru the feeding tube (no supplements just meds twice a day) was an accomplishment for us both and I made sure he could do it knowing I was going back to work. My intention was to make him as self sufficient as possible and of course making sure there were family & friends coming in during the day when I was gone was so important emotionally. There are alot of emotional ups and downs and he finally asked the MD for zoloft to help stabilize things for a bit and altho it took awhile to work it has made a big difference! Eating is one of the biggest challenges and we are still learning what works and what doesn't and keep trying new foods/textures. This is frustrating for both of us and I keep counseling patience - this surgery affects every nuance of our husbands eating routines and preferences; its like starting all over again & learning how to eat. Pain control is still an issue but each week it gets better and we are gradually decreasing all pain meds GRADUALLY (he tried to stop the fentanyl patch cold turkey and had withdrawal effects) - who knew? We are not pill takers here and never even considered the impact so now we run decisions like this thru the Docs. And altho we do plan things for the future we really live in the present - taking each day at a a time is no cliche around here. It is joyous to finally see bits of my "old" husband returning after such a grueling time (chemo/rt and then surgery) altho 70 pound lighter his smile has finally returned. These are just random thought off the top of my head and by all means ask away if there is anything I/my husband can do to help. Take care and my prayers go with you both (you are both survivors).
  • cyn0418
    cyn0418 Member Posts: 4
    #5
    marilynvp47 said:

    Dear Bill and all of you who have had a part in sharing your stories.
    Bill, I would like to thank you so much for your response, and also for getting this discussion board started. Your story has given me hope and courage to go forward! You're right Bill, I have been on every link and every site with info. on esophageal cancer known to man!

    I am new here, and I have already found a 'comfort level' just by reading all of your experiences and discussions.

    My husband, 58, was diagnosed with esophageal cancer on March 10, 2008, Stage 3,'several lymph nodes'and 0-M. The doctors also found several 'suspicious' cells on other organs as well. Since then, he has had 3 rounds of ECF, epirubicin, cisplatin, and 5FU, which is in a pump contained in a 'fanny pack' dispersing chemo 24/7. He has completed the EC part of chemotherapy, but is still on the 5FU until this Friday. His last CT scan showed all suspicious cells appeared to be gone and his malignancy has shrunk. His tissues around the esophagus area appeared to be getting 'soft' again, which is wonderful! He has had many side effects but has handled them ok. We saw his surgeion yesterday, and he is scheduled to go in for 4 other tests next week. After that, they will schedule him for surgery at Northwestern Memorial Hospital in downtown Chicago. My husband does not want to read any information regarding his illness or his surgery. I, on the other hand, can't get enouph info. I have read the brochure the surgeon gave us regarding his procedure and realized the long jorney he will be on. I know many of you have been there and are doing quite well now! I look up to all of you who have or are going, down this path, as I can't imagine the strength you must have. My prayers are with all of you and your caregivers daily, and I wish all of you good luck on this difficult road.
    My husband has a strong mental attitude and a wonderful support group. I am a very strong person, thank God, as I have seen my Father, Sister, Aunts,Father-in-law, and several dear friends fight cancer.
    If anyone can give me tips on what it will be like for my husband, when he comes home from his surgery, and if I need to find people to be with him while I'm at work, I would appreciate you letting me know. I'm thinking he would need to have assistance almost constantly, at least for a while.
    Again, I thank you Bill, and all of the wonderful and courageous people I have 'met' on this board. You are an inspiration to all of those going through this illness and also to all of the caregivers as well!
    God Bless you
    marilynvp47

    marilyn, just read your message about your husband. We go to NW Memorial also for treatment for my husband's esophageal cancer. He is in treatment and not sure if he will ever get surgery. There is a great support website that you can check out. http:/groups.msn.com/EsophgealCancerChatand Support. May the Lord bless you in your struggles with this beast. Cyndi :)
  • judyloo
    judyloo Member Posts: 40
    #6
    cyn0418 said:

    marilyn, just read your message about your husband. We go to NW Memorial also for treatment for my husband's esophageal cancer. He is in treatment and not sure if he will ever get surgery. There is a great support website that you can check out. http:/groups.msn.com/EsophgealCancerChatand Support. May the Lord bless you in your struggles with this beast. Cyndi :)

    Nice to see a current reply here; am checking out many other EC support sites. Anyone new to this DX needs to have so many questions answered and by folks that have been or are going through it! As I said my husband was diagnosed in Dec 07 & had surgery in April 08; what a journey this has all been. Just saw the GI guy today for Steves first dilation post surgery (he remebers nothing ) but thses narrowings/strictures are something to be dealt with quickly. Guess this was his first of 3-5 dilations to improve eating foods. I think I may take another look at cathy's cafe - this site seems too quiet for all the questions I have as a spouse.
  • marilynvp47
    marilynvp47 Member Posts: 10
    #7
    Cyndi,
    Thanks for your response. You said you & your husband are also going to N W Memorial Hospital....are you seeing Dr.deHoyas? When was your husband diagnosed and what treatment is he on? Thanks for the link to the other support group. I, also, am in another support group. When I get home and find the link to it, I will post for anyone interested.
    God bless you & your husband with courage & strength.
    marilynvp47
  • marilynvp47
    marilynvp47 Member Posts: 10
    #8
    judyloo said:

    Marilyn - my husband had the esophagectomy in April and has been home recovering since; he hopes to go back to work the end of June! I took the first 2 weeks off when he came home to be with him and the visiting nurse/physical therapists the insurance company covered were a great help. Boy it was fly by the seat of your pants time for us - learning to crush meds and put them thru the feeding tube (no supplements just meds twice a day) was an accomplishment for us both and I made sure he could do it knowing I was going back to work. My intention was to make him as self sufficient as possible and of course making sure there were family & friends coming in during the day when I was gone was so important emotionally. There are alot of emotional ups and downs and he finally asked the MD for zoloft to help stabilize things for a bit and altho it took awhile to work it has made a big difference! Eating is one of the biggest challenges and we are still learning what works and what doesn't and keep trying new foods/textures. This is frustrating for both of us and I keep counseling patience - this surgery affects every nuance of our husbands eating routines and preferences; its like starting all over again & learning how to eat. Pain control is still an issue but each week it gets better and we are gradually decreasing all pain meds GRADUALLY (he tried to stop the fentanyl patch cold turkey and had withdrawal effects) - who knew? We are not pill takers here and never even considered the impact so now we run decisions like this thru the Docs. And altho we do plan things for the future we really live in the present - taking each day at a a time is no cliche around here. It is joyous to finally see bits of my "old" husband returning after such a grueling time (chemo/rt and then surgery) altho 70 pound lighter his smile has finally returned. These are just random thought off the top of my head and by all means ask away if there is anything I/my husband can do to help. Take care and my prayers go with you both (you are both survivors).

    judyloo,
    Just read both of your replies and you have answered so many of my questions! It is very comforting for many of us, to have found a chat room that just deals with esophageal cancer. There aren't many people who have this illness, only about 13% in the U S, and we are very limited to who we can all discuss this illness with.
    I am happy to hear that your husband may be going back to work soon! I assume he will go back part time for a while. My husband is not quite working full time yet. He still gets weak and so tired after a few hours. You answered the question I had about how long you stayed home with him after his surgery. I was wondering if anyone needed the help of a visiting nurse. I said to my husband that I will stay in a hotel near the hospital for at least 4 days after his surgery so I can be with him as much as possible. He said, "I might not even be in the hospital that long". He has no clue as to what lies ahead of him and doesn't want to know. He beleives he will return home and simply 'get better'. This is what concerns me, but I need to realize there is nothing I can do to change his thinking.
    Did your husband sleep on a 'wedge' to aid in his breathing, etc.? Did the hospital teach you how to feed him through his tube? I helped my mom with my dad's feeding tube, etc. years ago. They may have changed their ways, by now. Was it difficult for your husband to feed himself thru the tube? I'm sorry I am asking so many questions, but I would like to have as much knowledge about this ordeal as I can.
    I am glad to hear your "old" husband is 'returning'and you can see him smile again. Just to see his expression change must be so comforting for you! You have both gone thru so much and the reward will be great. You are both survivors of a long & nasty jorney.
    God bless you both and all the people on this website that have given so much to others. This is how patients and caregivers learn how to deal with E C.
    marilynvp47
  • judyloo
    judyloo Member Posts: 40
    #9
    marilynvp47 said:

    judyloo,
    Just read both of your replies and you have answered so many of my questions! It is very comforting for many of us, to have found a chat room that just deals with esophageal cancer. There aren't many people who have this illness, only about 13% in the U S, and we are very limited to who we can all discuss this illness with.
    I am happy to hear that your husband may be going back to work soon! I assume he will go back part time for a while. My husband is not quite working full time yet. He still gets weak and so tired after a few hours. You answered the question I had about how long you stayed home with him after his surgery. I was wondering if anyone needed the help of a visiting nurse. I said to my husband that I will stay in a hotel near the hospital for at least 4 days after his surgery so I can be with him as much as possible. He said, "I might not even be in the hospital that long". He has no clue as to what lies ahead of him and doesn't want to know. He beleives he will return home and simply 'get better'. This is what concerns me, but I need to realize there is nothing I can do to change his thinking.
    Did your husband sleep on a 'wedge' to aid in his breathing, etc.? Did the hospital teach you how to feed him through his tube? I helped my mom with my dad's feeding tube, etc. years ago. They may have changed their ways, by now. Was it difficult for your husband to feed himself thru the tube? I'm sorry I am asking so many questions, but I would like to have as much knowledge about this ordeal as I can.
    I am glad to hear your "old" husband is 'returning'and you can see him smile again. Just to see his expression change must be so comforting for you! You have both gone thru so much and the reward will be great. You are both survivors of a long & nasty jorney.
    God bless you both and all the people on this website that have given so much to others. This is how patients and caregivers learn how to deal with E C.
    marilynvp47

    Marilyn - we bought risers to elevate the head of the bed - the reflux post surgical is considerable; however he also bought a long wedge pillow to assis and everything is working very well. I'd have it in place prior to you coming home from the surgery!! The feeding tube was taught to us the day before we were going home but we were watching carefully long before that. They gave him continuous feedings there but put him on soft foods only at home. Se we just crushed pills until the surgeon let him swallow them. It was not difficult for S to use the tube just a little practice togerther and he had it. Yours will too. The VNA gave S alot of support and answered questions that came up at home and I would recommend one come in for a while to monitor vital signs and weight issues and tons of questions. When does your husband have his surgery? The best thing you and any other family members can do is be there to be his advocate - things happen unexpectedly in the hospital all the time and someone needs to be there to let MDs and RNs know whats going on and even contradict them when you need to. Mistakes happen. So yes, be there while he is in the hospital or have someone there when you cannot be - my daughter did that and she let nothing slip by! Good luck and let us know how he does - we are here to support you anyway we can.
  • marilynvp47
    marilynvp47 Member Posts: 10
    #10
    judyloo said:

    Marilyn - we bought risers to elevate the head of the bed - the reflux post surgical is considerable; however he also bought a long wedge pillow to assis and everything is working very well. I'd have it in place prior to you coming home from the surgery!! The feeding tube was taught to us the day before we were going home but we were watching carefully long before that. They gave him continuous feedings there but put him on soft foods only at home. Se we just crushed pills until the surgeon let him swallow them. It was not difficult for S to use the tube just a little practice togerther and he had it. Yours will too. The VNA gave S alot of support and answered questions that came up at home and I would recommend one come in for a while to monitor vital signs and weight issues and tons of questions. When does your husband have his surgery? The best thing you and any other family members can do is be there to be his advocate - things happen unexpectedly in the hospital all the time and someone needs to be there to let MDs and RNs know whats going on and even contradict them when you need to. Mistakes happen. So yes, be there while he is in the hospital or have someone there when you cannot be - my daughter did that and she let nothing slip by! Good luck and let us know how he does - we are here to support you anyway we can.

    Judy, sorry I haven't responded sooner. Thanks for your reply. I have purchased a wedge pillow for my husband and I was planning on having to have a nurse come to our home a few times during the week to check on him. Unfortunately, my husband had an MRI of his liver yesterday, 7/09, and the surgeon told me he saw'several cells' on his liver and he will need to take a biopsy of one, hopefully this week. His surgery has been cancelled for now. I assume he will need radiation, more chemo or both. If this has happened to anyone else, I would love to hear from you. We are taking one day at a time, and I am still very optimistic about the outcome!
    When it is time for my husbands surgery, I will be there with him, as you were with your husband, or someone will be there when I can't be. I realized mistakes could happen and I never want him to be alone.
    How is your husband doing now? Has he progressed from soft foods to foods with more substance? Has he returned to work yet? I pray his health is getting better daily, as well as everyone who visits this board. We are still making plans for the future, as well, just taking it one day at a time.
    Thank you so much for your support, it has helped me tremendously!
    Marilyn
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • SCHMITK
    SCHMITK Member Posts: 1
    #12
    marilynvp47 said:

    Dear Bill and all of you who have had a part in sharing your stories.
    Bill, I would like to thank you so much for your response, and also for getting this discussion board started. Your story has given me hope and courage to go forward! You're right Bill, I have been on every link and every site with info. on esophageal cancer known to man!

    I am new here, and I have already found a 'comfort level' just by reading all of your experiences and discussions.

    My husband, 58, was diagnosed with esophageal cancer on March 10, 2008, Stage 3,'several lymph nodes'and 0-M. The doctors also found several 'suspicious' cells on other organs as well. Since then, he has had 3 rounds of ECF, epirubicin, cisplatin, and 5FU, which is in a pump contained in a 'fanny pack' dispersing chemo 24/7. He has completed the EC part of chemotherapy, but is still on the 5FU until this Friday. His last CT scan showed all suspicious cells appeared to be gone and his malignancy has shrunk. His tissues around the esophagus area appeared to be getting 'soft' again, which is wonderful! He has had many side effects but has handled them ok. We saw his surgeion yesterday, and he is scheduled to go in for 4 other tests next week. After that, they will schedule him for surgery at Northwestern Memorial Hospital in downtown Chicago. My husband does not want to read any information regarding his illness or his surgery. I, on the other hand, can't get enouph info. I have read the brochure the surgeon gave us regarding his procedure and realized the long jorney he will be on. I know many of you have been there and are doing quite well now! I look up to all of you who have or are going, down this path, as I can't imagine the strength you must have. My prayers are with all of you and your caregivers daily, and I wish all of you good luck on this difficult road.
    My husband has a strong mental attitude and a wonderful support group. I am a very strong person, thank God, as I have seen my Father, Sister, Aunts,Father-in-law, and several dear friends fight cancer.
    If anyone can give me tips on what it will be like for my husband, when he comes home from his surgery, and if I need to find people to be with him while I'm at work, I would appreciate you letting me know. I'm thinking he would need to have assistance almost constantly, at least for a while.
    Again, I thank you Bill, and all of the wonderful and courageous people I have 'met' on this board. You are an inspiration to all of those going through this illness and also to all of the caregivers as well!
    God Bless you
    marilynvp47

    Dad diagnosed with esophogeal cancer
    Hi Marilyn,

    I hope that this message finds you and your husband in good health. My dad was diagnosed with esophegeal cancer about 7 months. It was stage 3 or 4 and it has spread to his lymph nodes. Unlike your husband, my dad is not very positive about the prognoisis and is very depressed. I am writing because I feel hopeless right now and I want to try and help my mom. My dad was diagnosed a week after my mom's mom died so needless to say, she is finding it hard to stay strong. My dad has gone through 6 months of chemo and about 6 weeks of radiation. He is barely able to eat and when he does eat, it all comes back up. They are currently going to Rush hospital in Chicago, but are not pleased with the doctor's there. I see that you went to NWH and was wondering if you had any suggestions about doctors to see there.

    Thanks,
    Kelly

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