My first time

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cancersupport1
cancersupport1 Member Posts: 11
edited March 2014 in Esophageal Cancer #1
Hi,

This is my first time. My husband has been diagnosed with esophageal cancer. The diagnosis came April, 2010. I always felt that I could handle everything. As I was reading all the literature about this cancer,I kept telling myself that I would never need a support group. I felt that I would have failed if I joined a support group. I wasn't strong enough to handle all the issues that come about with cancer.

Then I decided to speak to someone about the feelings that I have been having. He took the time to listen and explain that what I am feeling is normal and not a sign of weakness. He made me understand that it's a sign of strength to need outside support. This is the reason I am here. For me to be able to support my family emotionally and physically, I have to take care of me. For me, this is the first step.

My husband has just completed 7 chemo treatments. He just had a PET scan and the results showed some fluid in his stomach that is being tested. The wait for the results of this test is very stressful. Until the results are in, there isn't a plan for the future. This is the difficult part..not knowing.

Thank-you for "listening".

Comments

  • Gatoraid
    Gatoraid Member Posts: 66
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    This is Only a Phase
    I was diagnosed with stage III adenocarcinoma earlier in August and will start chemo (Cisplatin and 5-FU) and radiation therapy in late September. I tend to be an optomist and know that this is a brief (but difficult) phase. Chatting does help and the more you learn the more you're prepared for the decisions that you must face.

    There should always be a plan for the future and while we always seem to be waiting for good or bad news, it's best to move forward as best we can. During my initial tests and doctor visits I couldn't think of anything else, but now I'm forcing myself to be patient.

    Chatting to get things off your chest does help. People on this site go through alot. There are some heartwrenching situations here but there are alot of successful outcomes as well. One thing I did learn is that alot of the information on the internet is dated and sometimes doesn't really apply to your situation, even though you think it does.

    I wish you and your husband the best and feel free to say hi.

    Jim... aka gatoraid
  • sandy1943
    sandy1943 Member Posts: 824
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    I was diagnosed with EC in
    I was diagnosed with EC in Nov.2007. After chemo and surgery I am now cancer free. I trie to find a group when I was diagnosed, but was unable to find one fo EC. I joined this one in July. Even though I am disease free, I still have to have regular testing. I have learned so much on this site. It has so many caring people with a wealth of knowledge and support. Most of us react to treatment in different ways, but there is usually someone that has gone thru similar things. Keep checking. there will be others that will be replying to your post. We have a lot of care givers.
    SAndra
  • This comment has been removed by the Moderator
  • This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,391 Member
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    Welcome to our little family
    Hi,

    Welcome to our little EC family. We all know the anxiety or waiting for results. We refer to it as scanxiety. Even after you finish surgery and chemotherapy there always seems to be one more scan, one more endoscopy, or one more blood test. One thing we learn as cancer survivors or caretakers is patience. We learn to hope for the best and prepare for the worst.

    I am a cancer survivor, if this disease has taught me anything it is to take one day at a time (or sometimes one hour at a time) and don’t sweat the small stuff. Once you have cancer everything becomes small stuff.

    It sounds like your husband is fortunate to have a strong partner to help in his fight against cancer. I thank God every day that I was fortunate enough to have a wife that helped me through the difficult times.

    Now that I am through chemotherapy and recovering from surgery I am beginning to enjoy life with a new appreciation for every day. I pray you and your husband will reach that stage soon. In the mean time we are here for you to share our experience, provide suggestions, or just listen when you need to vent.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • cancersupport1
    cancersupport1 Member Posts: 11
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    unknown said:

    This comment has been removed by the Moderator

    Thank-you for your advice
    Thank-you for your advice and support. We just found out today that my husband has Stage 4 EC. From the recent PET scan results, there is a polup ( forgive the spelling) in his throat. The oncologist may request a 2nd opinion regarding the operation. He will be continuing with his chemo treatments. The treatments are every 14 days. The first day is at the hospital and then he goes home and is connected to chemo for 46 hours. Here are the chemotherapy drugs:

    5-FU
    Leucovorin
    Exaliplatin

    My husband is 60 years old and we have two teenage daughters. They know their dad has cancer, but the extent of it they don't. This is so difficult for my family.
  • Thank-you for your advice
    Thank-you for your advice and support. We just found out today that my husband has Stage 4 EC. From the recent PET scan results, there is a polup ( forgive the spelling) in his throat. The oncologist may request a 2nd opinion regarding the operation. He will be continuing with his chemo treatments. The treatments are every 14 days. The first day is at the hospital and then he goes home and is connected to chemo for 46 hours. Here are the chemotherapy drugs:

    5-FU
    Leucovorin
    Exaliplatin

    My husband is 60 years old and we have two teenage daughters. They know their dad has cancer, but the extent of it they don't. This is so difficult for my family.

    This comment has been removed by the Moderator
  • cancersupport1
    cancersupport1 Member Posts: 11
    Options
    Gatoraid said:

    This is Only a Phase
    I was diagnosed with stage III adenocarcinoma earlier in August and will start chemo (Cisplatin and 5-FU) and radiation therapy in late September. I tend to be an optomist and know that this is a brief (but difficult) phase. Chatting does help and the more you learn the more you're prepared for the decisions that you must face.

    There should always be a plan for the future and while we always seem to be waiting for good or bad news, it's best to move forward as best we can. During my initial tests and doctor visits I couldn't think of anything else, but now I'm forcing myself to be patient.

    Chatting to get things off your chest does help. People on this site go through alot. There are some heartwrenching situations here but there are alot of successful outcomes as well. One thing I did learn is that alot of the information on the internet is dated and sometimes doesn't really apply to your situation, even though you think it does.

    I wish you and your husband the best and feel free to say hi.

    Jim... aka gatoraid

    Hi "Gatoraid"
    Thank-you for

    Hi "Gatoraid"

    Thank-you for your response. What is so difficult is that we were originally given a very positive response. Now there may be cancer cells in the fluid of his stomach and the operation can't happen. He's in Stage 4 . He will be having chemo again. The following are the drugs that will used:
    5-FU
    Leucovorin
    Oxalliplatin
    He has the treatment at the hospital for @5 hours. He then goes home and has the treatment for 46 hours. This happens every two weeks.

    I also wish you the best .
  • cancersupport1
    cancersupport1 Member Posts: 11
    Options
    paul61 said:

    Welcome to our little family
    Hi,

    Welcome to our little EC family. We all know the anxiety or waiting for results. We refer to it as scanxiety. Even after you finish surgery and chemotherapy there always seems to be one more scan, one more endoscopy, or one more blood test. One thing we learn as cancer survivors or caretakers is patience. We learn to hope for the best and prepare for the worst.

    I am a cancer survivor, if this disease has taught me anything it is to take one day at a time (or sometimes one hour at a time) and don’t sweat the small stuff. Once you have cancer everything becomes small stuff.

    It sounds like your husband is fortunate to have a strong partner to help in his fight against cancer. I thank God every day that I was fortunate enough to have a wife that helped me through the difficult times.

    Now that I am through chemotherapy and recovering from surgery I am beginning to enjoy life with a new appreciation for every day. I pray you and your husband will reach that stage soon. In the mean time we are here for you to share our experience, provide suggestions, or just listen when you need to vent.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Thank-you so much for your
    Thank-you so much for your response. I don't know about the part that I am a "Strong" partner. I feel very weak right now. We were just told today that my husband is in Stage 4. My husband keeps his feeling inside, and I feel like screaming. I have to keep calm as I have 2 teenage daughters worried about their Dad.

    It is wonderful to hear positive news. Cancer is such a bad thing. As far as the operation is concerned , it's on the "back burner" for now. We are going to get a second opinion regarding the operation..

    Cancer is not only difficult on the patient, but it also is difficult on the caregivers and family.

    Thank-you for support and prayers.
  • Thank-you so much for your
    Thank-you so much for your response. I don't know about the part that I am a "Strong" partner. I feel very weak right now. We were just told today that my husband is in Stage 4. My husband keeps his feeling inside, and I feel like screaming. I have to keep calm as I have 2 teenage daughters worried about their Dad.

    It is wonderful to hear positive news. Cancer is such a bad thing. As far as the operation is concerned , it's on the "back burner" for now. We are going to get a second opinion regarding the operation..

    Cancer is not only difficult on the patient, but it also is difficult on the caregivers and family.

    Thank-you for support and prayers.

    This comment has been removed by the Moderator
  • Thank-you so much for your
    Thank-you so much for your response. I don't know about the part that I am a "Strong" partner. I feel very weak right now. We were just told today that my husband is in Stage 4. My husband keeps his feeling inside, and I feel like screaming. I have to keep calm as I have 2 teenage daughters worried about their Dad.

    It is wonderful to hear positive news. Cancer is such a bad thing. As far as the operation is concerned , it's on the "back burner" for now. We are going to get a second opinion regarding the operation..

    Cancer is not only difficult on the patient, but it also is difficult on the caregivers and family.

    Thank-you for support and prayers.

    This comment has been removed by the Moderator
  • BJeastOR
    BJeastOR Member Posts: 18
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    This is a place to learn and share, welcome
    I'm sorry your family has joined our family here, because it means you are facing this difficult journey too. However, this is a place of reality, where you can and hopefully will learn and share your experience too with the rest of us. It was 1.5 years ago that I was in your shoes, facing the unknown. I did not find this resource at first, so you are already ahead of the game. My hubby too was resistant to sharing and "getting with it" at first. He wasn't ready to let ME push him. Fortunately, we also had a male friend who he would listen to. I knew that coming from me, it was my idea, but coming from his friend, he could then come back to me and it was HIS idea to pursue expert second opinions at the BEST, MOST EXPERIENCED place he felt we could handle. You might consider printing off William's message to you and letting him read it and stew about it for a day or so. Hopefully he will then come back to you for assistance in pursuing more aggressive options.
    Also, I second William's insistence on the Jtube. At first our local gastroenterologist was pushing for my hubby to get a Gtube. Well, I had read in the cancer protocols that a Jtube was preferred and it just made sense to me not to mess up the stomach they were going to need to use for his esophagus if he had surgery. The docs had already scheduled him for this Gtube placement and I just flat called up and cancelled it. Unfortunately, I was still too new at the game before this and let them put in a stent. The biggest mistake we made. Don't do it. Once we got to Mayo clinic they said "oh, we don't do that." (I can't remember if they said they *never* do it.) Point is, you have got to be as informed and assertive as possible and a bulldog for your hubby's best care. His job is to survive the treatments the best he can and try to stay positive. He won't have the energy for much else.
    Along the way, I happened to read the notes from our first doctor team and they noted that hubby was a "very nice gentleman" and that "the wife has done extensive research" and some other comments that made me think they found me a bit pushy. Well, too bad. If I hadn't been pushy, my husband would be dead by now. Sorry to be blunt, but its true. I try to always be respectful and polite, but I am firm.
    So, girlfriend, you have your work cut out for you, but we are all here to help. And I also wanted to say that even after all this time and experience that I've been through, I'm still learning from the others here too.

    Jen
  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
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    Sorry that you are here, but
    Sorry that you are here, but that being said...I really hope you will find this a healing and helpful place. I know that I have.

    Stage IV is just a number.
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
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    Hi "Gatoraid"
    Thank-you for

    Hi "Gatoraid"

    Thank-you for your response. What is so difficult is that we were originally given a very positive response. Now there may be cancer cells in the fluid of his stomach and the operation can't happen. He's in Stage 4 . He will be having chemo again. The following are the drugs that will used:
    5-FU
    Leucovorin
    Oxalliplatin
    He has the treatment at the hospital for @5 hours. He then goes home and has the treatment for 46 hours. This happens every two weeks.

    I also wish you the best .

    cancersupport1,
    I have

    cancersupport1,
    I have finished up catching up on all your posts. My husband Charlie is also stage ivb. I don't have a lot to add but I do think the thing that makes our husbands situation a little more difficult is the fluid in the abdomen. We have been told numerous times this area cannot be radiated and with all those cancer cells floating around, he would not be a candidate for surgery. It had already metastisized to his lung and liver. When Charlie was first admitted into the hospital, they removed 4.5 liters of fluid. Within a couple of weeks it was back and they removed another 7 liters just before he started his chemo. He was hospitalized for his chemo....had Cisplatin, Taxotere, followed by 120 continuous hours of 5FU. He had 4 rounds of the chemo...that was April, May, June and July of 2009. Thankfully (& I do thank GOD everyday) that fluid has not returned. In fact he was in remission after just 2 rounds of the chemo. After that he went on oral chemo (Xeloda which is the oral form of 5-FU) in Aug 2009. He did that along with Hercepin until June of this year when he started experiencing swallowing problems. So the dr decided to start chemo again...this time he is doing Taxol and Carboplatin. He had his 6th infusion yesterday. He is extremely tired but other than that, he is doing OK. Doesn't have the strength he once had and is still having some problems swallowing but he is living with cancer. I know at this point we are extremely blessed for the cancer not to have come back in the lung, liver, or anyplace else. Everytime we have a PET we just hold our breath until we get the results. The waiting his horrible.
    I wish you and your husband the best....I will keep you both in my prayers. If there is anything I can do for you, let me know. Where is your husband being treated??
    Take care and try to stay strong,
    Jane
  • mmr19
    mmr19 Member Posts: 75
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    Welcome
    Sorry you have to be here. But this is the best place to come for answers and support. Everyone here can relate in one way or another exactly what you are going through.

    My husband was dx Dec 2009 and is stage 4b. It has been a long hard road so far, but just being able to read that we are not alone has helped tremendously. I feel much better informed at what is happening...what is normal...what is not.

    You and your family are in my prayers-
    Marta