This is my first post...My husband has EC...
This all began when my 63 year old hubby had a few problems with dry toast being “caught” in his throat in November. He went to see his doctor soon after who ordered a upper GI with Esopagram. A 7cm ulcer was revealed and a CT performed two days later, which also showed two spots the liver. Not good news, so an endoscopy was then performed. Of course, it was cancerous. The Pet scan was done for staging, and two areas on the lower esophagus had increased FDG uptake, as well as two spots on the right lobe of the liver. Everything else, including a brain scan, was “unremarkable.”
Needless to say we were shocked at this news! As I scoured the internet for information about this awful disease I found this sight and found it to be both terrifying, yet comforting at the same time (!) I hope to sound off with all of you on treatments that we were offered and ask for advice on possible next steps to take...many of you sound so knowledgeable, so I would truly appreciate your advice and input!
We live in Los Angeles, so of course we started close to home with many Dr’s/centers to choose from. After the initial CT, we saw Dr. Mary Maish (Thoratic surgeon)at UCLA. She told us that because of the stage, that surgery was not an option, but she urged us to see an oncologist for treatment. She recommended one at UCLA ( pancreatic cancer speciality), but said the one our general doctor referred us to was also excellent, so that’s who we ended up seeing. He ordered the PET, had liver biopsies done, and had a port placed all within a few days. Xeolda started last week ( massive dose, 2000mg a day), and so far Hubby has had no side effects. Oxaliplatin will follow in a few weeks, as will Herception ( if he tests positive for Her-2). His goal is to attack systemically, and then concentrate on the tumors. At this point he is hopeful that he can get my husband to a point where surgery is possible.
But.....other than cancer, things are great. My husband is in excellent health, not even anemic! He looks about 15 years younger than he is, and has always been very physically active (an avid golfer). He does not smoke or drink, and pretty much has a very healthy diet. He still eats anything he wants to! To be honest, if not for all of these tests and diagnoses, I would never suspect he is sick...it all seems so surreal!
After reading many posts on here, I’ve noticed several recommendations to seek second opinions at major cancer hospitals, so please advise how I would go about doing this and if you have any recommendations....
Thanks! You are all in my prayers....
Mary
Comments
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Welcome Mary...
The circumstances of why you are here stink, but glad you found this board. You will definately find support and knowledge of EC here!
William is amazing with his knowledge and you will no doubt hear from "Bailey1459" who is an "expert" in her own right, in the near future.
As for me, my father was diagnosed last March with stage IVb EC with liver mets as well. He's been doing several different chemo's off and on since April. At the moment he is doing amazingly well. He's gained weight, still goes to the office and pretty much lives his "normal" life.
It's my understanding that when cancer has spred to another major organ, surgery is not possible. And unfortunately, neither is a "cure". The goal is to keep the cancer under control and stabalize it as much as possible. That's the tricky part. Patience may do well for awhile on nme chemo regimen, but eventually it will stop working, so you try another "cocktail" of chemo drugs and on and on.
Best piece of advice I can give, is to go to a major cancer center with doctors who specialize in EC and have LOTS of experience! Second opinions are ALWAYS a good idea as well.
I know how devistating the news can be. We were all shocked at my dad's diagnosis. He's fairly young (69) and very active. He never had any swallowing or eating issues. It was kinda by a fluke that they made the diagnosis. He had low energy and was losing weight for no reason. His hemoglobin was extremely low, so they came to the conclusion he was losing blood "somewhere". After being scoped they found a "mass" at the Esophageal junction. His scans showed several inlarged nodes and they did a liver biopsy which confirmed cancer in the liver. It has also spread to his spine during one of his chemo breaks last month. Along with his chemo he's been doing "alternative" treatment which has helped him tremendously. We are all convinced it is the reason he is still here with us today! Honestly, my mother and I didn't think we'd be spending Christmas with him. So glad we were wrong! Praise God!!
You have to take each day as it comes. Focus on the present and be grateful for each minute you have with your loved one. None of us know how much time we have, but that shouldn't really matter. We should focus on loving one another in the here and now! That is the blessing that EC gives. It forces you to live intentionally for TODAY!
Blessings,
Sally0 -
Sallysal314 said:Welcome Mary...
The circumstances of why you are here stink, but glad you found this board. You will definately find support and knowledge of EC here! William is amazing with his knowledge and you will no doubt hear from "Bailey1459" who is an "expert" in her own right, in the near future.
As for me, my father was diagnosed last March with stage IVb EC with liver mets as well. He's been doing several different chemo's off and on since April. At the moment he is doing amazingly well. He's gained weight, still goes to the office and pretty much lives his "normal" life.
It's my understanding that when cancer has spred to another major organ, surgery is not possible. And unfortunately, neither is a "cure". The goal is to keep the cancer under control and stabalize it as much as possible. That's the tricky part. Patience may do well for awhile on nme chemo regimen, but eventually it will stop working, so you try another "cocktail" of chemo drugs and on and on.
Best piece of advice I can give, is to go to a major cancer center with doctors who specialize in EC and have LOTS of experience! Second opinions are ALWAYS a good idea as well.
I know how devistating the news can be. We were all shocked at my dad's diagnosis. He's fairly young (69) and very active. He never had any swallowing or eating issues. It was kinda by a fluke that they made the diagnosis. He had low energy and was losing weight for no reason. His hemoglobin was extremely low, so they came to the conclusion he was losing blood "somewhere". After being scoped they found a "mass" at the Esophageal junction. His scans showed several inlarged nodes and they did a liver biopsy which confirmed cancer in the liver. It has also spread to his spine during one of his chemo breaks last month. Along with his chemo he's been doing "alternative" treatment which has helped him tremendously. We are all convinced it is the reason he is still here with us today! Honestly, my mother and I didn't think we'd be spending Christmas with him. So glad we were wrong! Praise God!!
You have to take each day as it comes. Focus on the present and be grateful for each minute you have with your loved one. None of us know how much time we have, but that shouldn't really matter. We should focus on loving one another in the here and now! That is the blessing that EC gives. It forces you to live intentionally for TODAY!
Blessings,
Sally
Sally,
That last paragraph, I think, is some of the best advice too. Not just for EC, but life. It's sad many of us have had to learn this "the hard way". It seems that the most important lessons in life come via "the hard way"...uggg.
This disease has so many facets; medical, mental,spiritual,financial and legal.It seems to creep into every part of not only the patient's life, but their family's as well. I picture it like throwing a stone in a lake and watching the ripples get wider and wider. As awful as this disease can be, there is a lot of "good" in those ripples if we are present and open to it.
Deb0 -
Mary welcome to the board and love what you said SallyLivingFaith said:Sally
Sally,
That last paragraph, I think, is some of the best advice too. Not just for EC, but life. It's sad many of us have had to learn this "the hard way". It seems that the most important lessons in life come via "the hard way"...uggg.
This disease has so many facets; medical, mental,spiritual,financial and legal.It seems to creep into every part of not only the patient's life, but their family's as well. I picture it like throwing a stone in a lake and watching the ripples get wider and wider. As awful as this disease can be, there is a lot of "good" in those ripples if we are present and open to it.
Deb
Mary,
Welcome to this board. Think William has done another excellent job initiating you here. YOu sound like you and your husband have done all the right things and are getting good treatment. Hope they can get your husband in a remission and maybe make those liver spots go away. Just wanted to note what Sally said and Deb seconded the emotion, to take each day with our loved ones and live in the moment. My EC is a gift, I hated the suffering and treatment and complications but I loved that I saw so much in a new light, I thought I appreciated all days and every moment but EC makes it so much more real. Nobody really knows what the future holds for them. take care and hope the treatments work!!!!
Donna700 -
Welcome
Hello Mary and welcome to our csn family to you and your husband. Yes, William is our top notch guy here. Sounds like you are most definitely on the right track. Second opinion is always recommended in my mind. I was a caregiver for my dad. He lost his battle with ec when it went to his liver in March 10. CA has some wonderful hospitals and cancer treatment centers. I have a friend here, screen name is Heartofsoul, name is Steve. He lives in Calif. I will give him your info and he will touch base with you.
Keep up your excellent work! keep us up to date.
Tina in Va0 -
Mary,I just read each postTina Blondek said:Welcome
Hello Mary and welcome to our csn family to you and your husband. Yes, William is our top notch guy here. Sounds like you are most definitely on the right track. Second opinion is always recommended in my mind. I was a caregiver for my dad. He lost his battle with ec when it went to his liver in March 10. CA has some wonderful hospitals and cancer treatment centers. I have a friend here, screen name is Heartofsoul, name is Steve. He lives in Calif. I will give him your info and he will touch base with you.
Keep up your excellent work! keep us up to date.
Tina in Va
Mary,I just read each post above to gain a understanding of both you and your spouses challenges and circumstances as well as the unselfish replies by other EC survivors. While I’m not a EC survivor, I am a two time cancer survivor who is always available to support and help others such as yourself & spouse in any way I can. The first suggestion I would offer is seriously consider what the gracious member "William W Marshall" has so professionally offered in his comprehensive and valuable post to you.
I have spent over a yr reading almost all of the other cancer topic discussion boards and posts here in CSN and been very active in Chat speaking to other survivors and caregivers daily. When a new member comes into CSN often bewildered and looking for support and advice, I find out what type of cancer they are dealing with and after finding out, I think of another member in CSN with the same type or similar cancer where the person can greatly benefit from by contacting that experienced and helpful member. Well Mary, that human being and contact for Esoph Cancer is William W Marshall. He is the best and I wouldn’t hesitate to send my own mother or wife to call upon him for his wisdom and compassion.
I noticed your spouse and yourself have been to UCLA med center in Westwood Calif. Im not sure what part of Los Angeles you and spouse live in but UC Irvine is excellent facility and as Mr Marshall mentioned, he knows of an outstanding Dr/ EC specialist at UC Irvine by the name of Tuan Nguyen. The drive/commute to Irvine from LA, while demanding, could very well be worth the effort for what can be gained. Were all lucky to have the caring and stand up community of people here in the EC board and I know many who have been helped in many ways.
Mary if for some reason either UCLA and UC Irvine are not best for you and spouse, I can speak of other medical centers well versed in cancer treatments in the S. Calif area as I’m sure others can too who have had positive experiences in their quest of living with and many times victorious in locking horns with cancer.
Please reach out to the members here as they make a big difference.
Steve0 -
Mary, I am sort of new here
Mary, I am sort of new here myself (my dad was recently diagnosed). You have already received so many great responses - I can only add that finding this site was comforting to me and I felt less scared once I was able to arm myself with the knowledge that these great folks have shared. Hope you feel the same comfort.0 -
Thanks William!unknown said:This comment has been removed by the Moderator
Oh My....I can't thank you enough for your kind support! I just signed on and saw your posts to me...they are filled with so much valuable information. I'm going to be up late reading tonight!
As scary as this all is, I suddenly feel some relief...thanks to you and the other kind posters on this board...because I don't feel so alone anymore. So thank you William...I'll post again soon...lots to read now :-)
With gratitude and hope,
Mary0 -
This comment has been removed by the ModeratorMarysPrayer said:Thanks William!
Oh My....I can't thank you enough for your kind support! I just signed on and saw your posts to me...they are filled with so much valuable information. I'm going to be up late reading tonight!
As scary as this all is, I suddenly feel some relief...thanks to you and the other kind posters on this board...because I don't feel so alone anymore. So thank you William...I'll post again soon...lots to read now :-)
With gratitude and hope,
Mary0 -
Finding the right place
Hi Mary,
I am also new here. I spent over a month at Tufts and finally transferred my care to Dada Farber.
I did so because Dada Farber does lots and lots of esophageal cancers. I recommend that you find a center as near to you as practical that specializes in Gastrointestinal cancer. You want a lot of experience in THIS cancer all in one place, with all the equipment they need.
This is a tough cancer and I doubt you will find easy answers. We all need the best centers we can find. The best centers have a depth of experience, very good funding, and a lot of patients with EC.
You email described referrals to other specialists. At Dana Farber they pick up the phone and make quick appointments with their team of associates and can do this all quickly. This cancer grow quickly and I can now feel the difference after I first sought treatment two months ago. Time is not on your side.
William seems very knowledgable and I always devour his postings especially as it relates to me. He is a patient, just like us, but he is in year 7 and for most of us, that is a very long time.
This cancer has a steep downhill slope. Get you affairs in order quickly and pull your family close. You will find many moments of grace on the road ahead.
Good luck to you. All of us here pray a lot and do so for you as well.
Keith
age 67 Boston
Stage IV
About to begin treatment0 -
Hi Sherri,unknown said:This comment has been removed by the Moderator
Thanks for
Hi Sherri,
Thanks for replying to my post...all of you on this board are so caring...I'm so thankful for you all. Yes, it sounds like our situation is quite similar, both with stage IV hubbies. I'm so sad to hear that things have not gone well with Jim recently. Its heartbreaking. I can relate to the pain you must be going through, and trying to be so strong at the same time...the weight really is on our shoulders, trying to shield our kids and loved one from dispair. I'm saying prayers for you every night!
Thanks also for the link on therasphere...I made a few calls today down to UC Irvine...I really want to take Rich down there next week to check it out and get a third opinion. Do you know if this is something that most doctors have access to, or is it just certain centers? Also, have you heard of gene therapy being done on EC in China? I'm wondering if that might be worth checking out as well.
Thanks again for your support!
Hugs~
Mary
PS. Rich is on his second week of chemo and played a full round of golf today (savoring every moment)!0 -
Hi Sally,sal314 said:Welcome Mary...
The circumstances of why you are here stink, but glad you found this board. You will definately find support and knowledge of EC here! William is amazing with his knowledge and you will no doubt hear from "Bailey1459" who is an "expert" in her own right, in the near future.
As for me, my father was diagnosed last March with stage IVb EC with liver mets as well. He's been doing several different chemo's off and on since April. At the moment he is doing amazingly well. He's gained weight, still goes to the office and pretty much lives his "normal" life.
It's my understanding that when cancer has spred to another major organ, surgery is not possible. And unfortunately, neither is a "cure". The goal is to keep the cancer under control and stabalize it as much as possible. That's the tricky part. Patience may do well for awhile on nme chemo regimen, but eventually it will stop working, so you try another "cocktail" of chemo drugs and on and on.
Best piece of advice I can give, is to go to a major cancer center with doctors who specialize in EC and have LOTS of experience! Second opinions are ALWAYS a good idea as well.
I know how devistating the news can be. We were all shocked at my dad's diagnosis. He's fairly young (69) and very active. He never had any swallowing or eating issues. It was kinda by a fluke that they made the diagnosis. He had low energy and was losing weight for no reason. His hemoglobin was extremely low, so they came to the conclusion he was losing blood "somewhere". After being scoped they found a "mass" at the Esophageal junction. His scans showed several inlarged nodes and they did a liver biopsy which confirmed cancer in the liver. It has also spread to his spine during one of his chemo breaks last month. Along with his chemo he's been doing "alternative" treatment which has helped him tremendously. We are all convinced it is the reason he is still here with us today! Honestly, my mother and I didn't think we'd be spending Christmas with him. So glad we were wrong! Praise God!!
You have to take each day as it comes. Focus on the present and be grateful for each minute you have with your loved one. None of us know how much time we have, but that shouldn't really matter. We should focus on loving one another in the here and now! That is the blessing that EC gives. It forces you to live intentionally for TODAY!
Blessings,
Sally
Thanks for your
Hi Sally,
Thanks for your reply and words of wisdom...they are truly appreciated. I hope that you had a nice Christmas with your mom and dad, and I hope his arm feels better soon (I read your other post).
Prayers and Hugs,
Mary0 -
Second Opinion in Los Angeles
Hi Mary,
My dad received a second opinion from Dr. Harmik Soukiasian, a thoracic surgeon at Cedars Sinai. His bio may be found at: http://www.cedars-sinai.edu/Bios---Physician/P-Z/Harmik-J-Soukiasian-MD.aspx
After my dad's first doctor essentially told him to go home and die, we were fortunate to find ourselves in Dr. Soukiasian's office. He's wonderful! If you need a second opinion, I would definitely recommend him.0
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