New diagnosis
Can anyone tell us what to expect with the radiation side effects?
Thank you all for being there, and God Bless you all. It was good to read the survival dates.
Linda
Comments
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After the initial shock
After the initial shock wears off, then we get down to the business of fighting the monster. Keep a positive attitude. Just know that anything you are going thru, others on this site have probably already experienced. No question is dumb, and no question is inappropriate. I can say without reservation, that we have learned from this forum, and we have been supported by the members. When the going gets rough ( as it is for us right now) they are there for you....to pray for you, with you, and to offer words of advice and encouragement. It feels like a family!0 -
New diagnosisunknown said:This comment has been removed by the Moderator
Thank you William for all of your very helpful information. Here are the answers to
the questions you posed for me:
My husband is on Cisplatin with hydration after and Zofran before. 5fu four days in a
row 24hrs a day. This chemotherapy will be given two months in a row.
The radiation is 6 weeks. The first surgeon we conferred with is a thoracic surgeon that
is located in Coeur d'Alene, Idaho where we live, and he is also on staff at Sacred Heart
Hospital in Spokane, Wa. He recommends the Ivor-Lewis surgery and does about 15 a year.
My husband has aortic valve stenosis and the surgeon said there isn't a anesetheologist that
would put him under without his valve being opened. He is on heart meds and Coumadin (sp?).
The surgeon also said he may have to insert a J tube. He seemed to know what he was talking about.
He is the one that said a Petscan and catscan need to be done the last week of radiation. I have
read that the results of the radiation can continue for several weeks, and the chemo the same. Jim will only have two months of chemotherapy and after reading this website it doesn't sound like what others have had. I guess each case is different. They have told us he has a 39% survival for 5yrs.
We do have an app't with a oncology surgeon in Spokane for a second opinion. I have concerns that
we might be better off going to a larger city or special center that specializes in minimally
invasive surgery. I talked with my surgeon about this and she indicated we were fine staying in Spokane. It is my husband's life, so I would like your opinion on this as well as others experiences. I was told by the local surgeon that the MIE surgery was not the recommended surgery. He indicated with so many lymph node involvements it was better to open him up to make sure they get all of the cancer.???? He is young and very self confident and highly regarded with the other physicians and oncology nurses.
I have done a great deal of research online and learned so much, but it is so overwhelming when
you are first going through it. It has helped so much to read the site and hear personal experiences. During my battle and continuing situation with chronic bowel obstructions and adhesions and continual major surgeries I have found I am in better hands by going back to my gyn/
oncology surgeon in So. California. He is the best and has been published regarding ovca & his survival rates are the highest. I want the same for my husband.
This is so difficult as my husband has always been my caregiver and protector. He is a man that doesn't deal well with illness in himself so this is new territory for us. I am a survivor and love him very much and am doing all I can to take any burden away from him.
Thank you so much for all of the links and Sherri's post. We have met with a dietician and have been given some good ideas for increasing calories. My problem is my husband has no appetite right now and refuses to eat. I remember the chemo days and food just isn't appealing. I have purchased Boost and try to get him to drink those. I am making homemade soup and mac n cheese as the tumor is quite large and makes it difficult for him to eat many things.
I appreciate this group and know it will bring me comfort. We have so much prayer and love surrounding us, but I am still feeling very alone. I think this must be normal right now.0 -
Breezelinda1120 said:New diagnosis
Thank you William for all of your very helpful information. Here are the answers to
the questions you posed for me:
My husband is on Cisplatin with hydration after and Zofran before. 5fu four days in a
row 24hrs a day. This chemotherapy will be given two months in a row.
The radiation is 6 weeks. The first surgeon we conferred with is a thoracic surgeon that
is located in Coeur d'Alene, Idaho where we live, and he is also on staff at Sacred Heart
Hospital in Spokane, Wa. He recommends the Ivor-Lewis surgery and does about 15 a year.
My husband has aortic valve stenosis and the surgeon said there isn't a anesetheologist that
would put him under without his valve being opened. He is on heart meds and Coumadin (sp?).
The surgeon also said he may have to insert a J tube. He seemed to know what he was talking about.
He is the one that said a Petscan and catscan need to be done the last week of radiation. I have
read that the results of the radiation can continue for several weeks, and the chemo the same. Jim will only have two months of chemotherapy and after reading this website it doesn't sound like what others have had. I guess each case is different. They have told us he has a 39% survival for 5yrs.
We do have an app't with a oncology surgeon in Spokane for a second opinion. I have concerns that
we might be better off going to a larger city or special center that specializes in minimally
invasive surgery. I talked with my surgeon about this and she indicated we were fine staying in Spokane. It is my husband's life, so I would like your opinion on this as well as others experiences. I was told by the local surgeon that the MIE surgery was not the recommended surgery. He indicated with so many lymph node involvements it was better to open him up to make sure they get all of the cancer.???? He is young and very self confident and highly regarded with the other physicians and oncology nurses.
I have done a great deal of research online and learned so much, but it is so overwhelming when
you are first going through it. It has helped so much to read the site and hear personal experiences. During my battle and continuing situation with chronic bowel obstructions and adhesions and continual major surgeries I have found I am in better hands by going back to my gyn/
oncology surgeon in So. California. He is the best and has been published regarding ovca & his survival rates are the highest. I want the same for my husband.
This is so difficult as my husband has always been my caregiver and protector. He is a man that doesn't deal well with illness in himself so this is new territory for us. I am a survivor and love him very much and am doing all I can to take any burden away from him.
Thank you so much for all of the links and Sherri's post. We have met with a dietician and have been given some good ideas for increasing calories. My problem is my husband has no appetite right now and refuses to eat. I remember the chemo days and food just isn't appealing. I have purchased Boost and try to get him to drink those. I am making homemade soup and mac n cheese as the tumor is quite large and makes it difficult for him to eat many things.
I appreciate this group and know it will bring me comfort. We have so much prayer and love surrounding us, but I am still feeling very alone. I think this must be normal right now.
Linda, check walgreens on line for a product made by Boost called Breeze. It is juice based, has 250 cal and almost the same nutrition as ensure. We have started supplementing with that and even when he is nauseous Dale tolerates the Breeze well. Dale has refused to eat for almost a year. He drinks equate plus chocolate from Walmart and now the breeze too which has 9 g protein. He lost 55 before his surgery, but surprisingly not much after. The cancer center nutritionist wants him to get 90 g of protein per day.......most days we get 60.0 -
This comment has been removed by the Moderatorlinda1120 said:New diagnosis
Thank you William for all of your very helpful information. Here are the answers to
the questions you posed for me:
My husband is on Cisplatin with hydration after and Zofran before. 5fu four days in a
row 24hrs a day. This chemotherapy will be given two months in a row.
The radiation is 6 weeks. The first surgeon we conferred with is a thoracic surgeon that
is located in Coeur d'Alene, Idaho where we live, and he is also on staff at Sacred Heart
Hospital in Spokane, Wa. He recommends the Ivor-Lewis surgery and does about 15 a year.
My husband has aortic valve stenosis and the surgeon said there isn't a anesetheologist that
would put him under without his valve being opened. He is on heart meds and Coumadin (sp?).
The surgeon also said he may have to insert a J tube. He seemed to know what he was talking about.
He is the one that said a Petscan and catscan need to be done the last week of radiation. I have
read that the results of the radiation can continue for several weeks, and the chemo the same. Jim will only have two months of chemotherapy and after reading this website it doesn't sound like what others have had. I guess each case is different. They have told us he has a 39% survival for 5yrs.
We do have an app't with a oncology surgeon in Spokane for a second opinion. I have concerns that
we might be better off going to a larger city or special center that specializes in minimally
invasive surgery. I talked with my surgeon about this and she indicated we were fine staying in Spokane. It is my husband's life, so I would like your opinion on this as well as others experiences. I was told by the local surgeon that the MIE surgery was not the recommended surgery. He indicated with so many lymph node involvements it was better to open him up to make sure they get all of the cancer.???? He is young and very self confident and highly regarded with the other physicians and oncology nurses.
I have done a great deal of research online and learned so much, but it is so overwhelming when
you are first going through it. It has helped so much to read the site and hear personal experiences. During my battle and continuing situation with chronic bowel obstructions and adhesions and continual major surgeries I have found I am in better hands by going back to my gyn/
oncology surgeon in So. California. He is the best and has been published regarding ovca & his survival rates are the highest. I want the same for my husband.
This is so difficult as my husband has always been my caregiver and protector. He is a man that doesn't deal well with illness in himself so this is new territory for us. I am a survivor and love him very much and am doing all I can to take any burden away from him.
Thank you so much for all of the links and Sherri's post. We have met with a dietician and have been given some good ideas for increasing calories. My problem is my husband has no appetite right now and refuses to eat. I remember the chemo days and food just isn't appealing. I have purchased Boost and try to get him to drink those. I am making homemade soup and mac n cheese as the tumor is quite large and makes it difficult for him to eat many things.
I appreciate this group and know it will bring me comfort. We have so much prayer and love surrounding us, but I am still feeling very alone. I think this must be normal right now.0 -
Hi
I would also like to
Hi
I would also like to reinforce Wm. Marshall's caution about going to high volume hospitals. My husband had also been diagnosed stage 3 in '08. We were all set to have the surgery done in our town at the local hospital. It wasn't until the case manager with our insurance company met with us and advised us to seed a second opinion on the surgery that we even thought about it. We went to a high volume hospital and had an excellent thoracic surgeon. Our local hospital did perhaps one a month. There were at least 4 patients on the floor that we met when my husband had his surgery. He had the Ivor Lewis surgery and no rib involvement. He had stomach cancer in addition to the esophageal cancer and when the surgeon found the cancer extended beyond the safe margin she knew exactly what to do. The nursing staff also has to know how to treat this patient and if the surgery isn't done very often, the care isn't as good. Trust your gut feelings and ask God to guide you and He will. Our very best wishes for a successful surgery and recovery!0 -
New diagnosisMyrtle9 said:Hi
I would also like to
Hi
I would also like to reinforce Wm. Marshall's caution about going to high volume hospitals. My husband had also been diagnosed stage 3 in '08. We were all set to have the surgery done in our town at the local hospital. It wasn't until the case manager with our insurance company met with us and advised us to seed a second opinion on the surgery that we even thought about it. We went to a high volume hospital and had an excellent thoracic surgeon. Our local hospital did perhaps one a month. There were at least 4 patients on the floor that we met when my husband had his surgery. He had the Ivor Lewis surgery and no rib involvement. He had stomach cancer in addition to the esophageal cancer and when the surgeon found the cancer extended beyond the safe margin she knew exactly what to do. The nursing staff also has to know how to treat this patient and if the surgery isn't done very often, the care isn't as good. Trust your gut feelings and ask God to guide you and He will. Our very best wishes for a successful surgery and recovery!
Thank you to all that have written to me. William you are amazing! You have convinced me we need to go to a high volume cancer hospital that specializes in MIE. It seems Dr. Luketick has the most experience and has the most publications. I want what is best for Jim and appreciate any imput. We live in North Idaho and are going to need to go somewhere else. Any suggestions on how to find the best high volume hospital? Do these hospitals have caregiver aid as to where to stay, etc? I am really feeling overwhelmed right now.0 -
This comment has been removed by the Moderatorlinda1120 said:New diagnosis
Thank you to all that have written to me. William you are amazing! You have convinced me we need to go to a high volume cancer hospital that specializes in MIE. It seems Dr. Luketick has the most experience and has the most publications. I want what is best for Jim and appreciate any imput. We live in North Idaho and are going to need to go somewhere else. Any suggestions on how to find the best high volume hospital? Do these hospitals have caregiver aid as to where to stay, etc? I am really feeling overwhelmed right now.0 -
Welcomeunknown said:This comment has been removed by the Moderator
Dearest Linda welcome to you and your husband. You have definitely found the right place here! We all love William and Loretta. They are both a true God send. I was a caregiver for my dad. He passed in March from ec with mets to the liver. I still come here daily to support and help people like yourselves. I have had the experience as a caregiver. Best of luck in finding the right hospital for you and your husband. You are on the right track! Keep up the good work, and keep in touch.
Tina in Va0 -
Linda, feeling overwhelmedlinda1120 said:New diagnosis
Thank you to all that have written to me. William you are amazing! You have convinced me we need to go to a high volume cancer hospital that specializes in MIE. It seems Dr. Luketick has the most experience and has the most publications. I want what is best for Jim and appreciate any imput. We live in North Idaho and are going to need to go somewhere else. Any suggestions on how to find the best high volume hospital? Do these hospitals have caregiver aid as to where to stay, etc? I am really feeling overwhelmed right now.
Linda, feeling overwhelmed is something we all felt when it came down to the surgery decisions. Some details seemed so hard yet became so easy once we had all the information. When my husband and I discussed going out of town for his surgery, the hospital had Hope Lodge if there were any rooms available, and a list of hotels with discounted rates. I stayed at a hotel the time he was in the ICU, then the hospital had a day bed available for me in his room. We stayed for 2 weeks and everything was taken care of for us with the case manager at the hospital arranging for all the necessary home care. I worried myself silly and ended up with more gray hair than I needed to! I'm so glad to hear that you want a high volume hospital. Our prayers continue!0 -
WelcomeTina Blondek said:Welcome
Dearest Linda welcome to you and your husband. You have definitely found the right place here! We all love William and Loretta. They are both a true God send. I was a caregiver for my dad. He passed in March from ec with mets to the liver. I still come here daily to support and help people like yourselves. I have had the experience as a caregiver. Best of luck in finding the right hospital for you and your husband. You are on the right track! Keep up the good work, and keep in touch.
Tina in Va
Thank you Tina. I feel like I have found a "ec" home where others truly understand what
we are going through.
I have a question for you as a caregiver; did you feel numb? I don't cry, I almost feel
emotionless. I am usually a very emotional person, but I almost feel like I am on auto-
pilot right now. I cook, clean, and do what has to be done. All Jim is doing is sleeping
now after the chemo. He has always been so healthy and in charge. It is painful to watch
him fading away from me. I feel very alone right now.
I can and have been a very strong person and we will get through this, just having a weak moment!0 -
This comment has been removed by the Moderatorlinda1120 said:Welcome
Thank you Tina. I feel like I have found a "ec" home where others truly understand what
we are going through.
I have a question for you as a caregiver; did you feel numb? I don't cry, I almost feel
emotionless. I am usually a very emotional person, but I almost feel like I am on auto-
pilot right now. I cook, clean, and do what has to be done. All Jim is doing is sleeping
now after the chemo. He has always been so healthy and in charge. It is painful to watch
him fading away from me. I feel very alone right now.
I can and have been a very strong person and we will get through this, just having a weak moment!0 -
Feelingsunknown said:This comment has been removed by the Moderator
William, I think God is really trying to tell me something! Your post was very similar to my Bible Study yesterday. God is in control, I am not, and worrying about it does not accomplish anything. My faith is in him and I know he will never leave me. He proved that to me during my battle with my cancer & cancer complications. I am his living miracle. Being human the emotions definitely can kick up. I have been reading the Psalms and they bring comfort to me. I have Footprints in the Sand hanging on my wall and on a plague in my studio! :-) Thank you for sharing about being "numb." It makes a lot of sense and right now I have business to take care of and Thank You Lord for protecting me!
I wouldn't be surprised if some of Jim's sleeping might not be some depression. I keep telling myself he is 68 with a heart condition, has stage 3 ec, is going through two chemotherapies and radiation five days out of seven, has pain in his mouth, chest, and severe fatigue. I would worry about him if he weren't a little depressed right now. He is a fighter, a believer in God, and is hoping for the best. I have set up a site on caring bridge for Jim and the comments bring us so much comfort, and knowing there are so many prayers covering us is incredible.
Thank you so much for contacting Dr. Luketich's office. I look forward to hearing what they have to say. I have made up my mind if we need to go to Pittsburg we will do that. I did see that another patient had a very positive experience at City of Hope in Southern California.
Onward and upward!
Linda0 -
More info regarding caseunknown said:This comment has been removed by the Moderator
William, I wanted to let you know that Jim has lymph node involvement near the tumor in
the chest, but unfortunately in his petscan the celiac node was very enlarged. I have
requested hard copies of all of his reports for my files. I will be getting those tomorrow.
They were surprised to see that the celiac nodes were affected. I wondered if that changed his
prognosis.
Good Night,
Linda0 -
This comment has been removed by the Moderatorlinda1120 said:More info regarding case
William, I wanted to let you know that Jim has lymph node involvement near the tumor in
the chest, but unfortunately in his petscan the celiac node was very enlarged. I have
requested hard copies of all of his reports for my files. I will be getting those tomorrow.
They were surprised to see that the celiac nodes were affected. I wondered if that changed his
prognosis.
Good Night,
Linda0 -
UC Irvineunknown said:This comment has been removed by the Moderator
Hello William, Thank you for all you have done to find out about Dr. Nguyen. He sounds like he is a perfect candidate for Jim's surgery. We spoke to Jim's radiation oncologist about our desire to find a surgeon at a high volume hospital. He understood and told us it is imperative for us to do this as soon as possible as the surgeon needs to have imput into Jim's treatment plan. He is concerned about us traveling and Jim being away from his radiation treatments. He also said Jim is not a candidate at this time for a J tube due to his radiation treatment field being in that area. Jim is doing pretty well with small meals and forcing food even though he has no interest in it. I am still concerned about his nutrition needs being met.
I have had to make a decision to see a surgeon closer to us, yet have found one at a high volume hospital that's specialty is Laporascopic and Endoscopic Surgery, Esophageal Cancer. His name is Dr.James Patrick Dolan at Oregon Health and Science University Hospital in Portland, Oregon.
__________________________________________________________________________________________________http://www.ohsu.edu/xd/health/services/providers/dolanj.cfm
Dr. Dolan is a Distinguished Graduate in Microbiology from San Diego State University. He received his medical degree from Stanford University and completed surgical residency at the University of California, San Francisco. During his residency he undertook a 2-year postdoctoral research fellowship in the area of tumor immunology with an emphasis in investigating the effects of interleukin-12 on solid cancer regression. After finishing residency training, he went on to completed fellowship training in advanced laparoscopic surgery at Oregon Health & Science University.
Dr Dolan’s clinical interests include minimally invasive and open surgery of the esophagus, stomach, pancreas and biliary system as well as minimally invasive adrenal and splenic surgery. He also has extensive experience in the surgical treatment of primary and recurrent herniae.
His research interests are in the areas of gastroesophageal reflux disease, esophageal disorders, minimally invasive surgery and biliary system injury and outcomes. He is committed to patient communication and to the advancement of surgical treatments through research and education.
_______________________________________________________________________________________________
I have had all of Jim's records faxed over to Dr. Dolan's office and spoke with his nurse. She said Dr. Dolan and his partner would be reviewing Jim's case and go over it with he and I. I asked if Jim would still be a candidate for MIE with the celiac nodes involved and she believed he would be. That was encouraging news after spending days on the net and reading that Stage 3 cases are usually not able to be done using robotics and MIE.
Jim and I would appreciate your imput regarding this situation. We both value your opinion and appreciate all you have done to help educate us. If I had not "met" you he would be having an "open" surgery in our local hospital and his survival rates would be less, and the surgeon does not remove the whole esophagus, increasing the odds against him. We both thank you. After doing what you do best please give us your informed advice. I have been so stressed over this and really wanted to take Jim to Pittsburg or Irvine, but another factor is Jim has great difficulty flying. Not having this issue, I just don't get it, but am trying to understand and be sympathetic to the fact he is in even worse physical condition due to the chemotherapy and radiation. He is very grateful for my research and help but wants to go to Portland or Seattle.
I found Swedish Medical Center in Seattle, but they are the ones that said he would not qualify for the MIE due to stage 3.
I am struggling to try to find the right fix so Jim will gain weight since he can't get the J tube yet. Everything tastes bad and what he wants is spagetti and chili and then when he eats it he feels terrible! I have been cooking all kinds of homemade dishes trying to peak his appetite.
I guess I have to toughen up and tell him no acidic foods and make him homemade chicken soups!
I have made the special drinks the nutritionist has given me recipes for and he doesn't like them. I remember the chemo does change the taste of foods and suppresses the appetite. Any tips would be appreciated.
Your grandchildren are so fortunate to have you and your wife. God Bless you both.
Linda0
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