New diagnosis

unknown said:

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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.

unknown said:

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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,

Linda

unknown said:

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UC Irvine
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.

Linda