new scared mom

mikesmom01
mikesmom01 Member Posts: 27
edited March 2014 in Esophageal Cancer #1
Hello to all of you, and thanks for sharing all this information. I'm seeking all the survivors I can find for hope . My son was diagnosed on March 31st with stage 1V EC. He has comppleted one round of chemo and is in his 3rd week of radiation. His prognosis is "up to God" at this point. He is a young man, only 29, and the doctors are all amazed at this saying it's real uncommom for someone his age to get this kind of cancer and he is not a smoker or drinker. His MediPort became infected and was removed right in the doctor's office last week and now we're in wound care with a VAC unit and further chemo is on hold (which frightens me)until the wound heals, and it's a little larger than a quarter.He stays really tired, unable to eat or use the g-tube. Arrangements are being made for him to have a nighttime IV drip of nutrition while he sleeps.
All this is so surreal and scary for us all. I found this and wanted to be a part of, I felt a glimmer of hope here, the first since this all began. We've been relying heavy on pryer and support from friends and family, but being in contact with others in the same situation makes it alot more comforting.
Best wishes to you all.

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Welcome Mike's Mom and Mike
    Hi Mike's mom,
    Sorry that you have to be here, but happy to meet you! Congratulations to Mike for completing his chemo. His age is to his advantage. I do not think that any cancer chooses an age, race, or gender. It just "does". My dad passed away from ec on March 9,2010. He had a wonderful year, beat the ec, but in December the primary cancer of the ec metasthsized to his liver. Once Mike is able to get more sufficient nutrition, he will begin to feel better. My dad did not drink or smoke. But...he did have chronic acid reflux for many many years, which kept being treated, but it was not until 2008 we as a family, not any dr. insisted he have a scope done. He was having a lot of trouble with eating and swallowing. Best of luck to you and Mike. We will be praying for you. Come back often, and give us Mike's updates. You will find many survivors on this board!
    Tina
  • paul61
    paul61 Member Posts: 1,391 Member
    #3
    Welcome Mike's Mom
    Welcome Mike's Mom,

    Mike is very fortunate in several areas:

    1. It is very unusual for EC to be diagnosed in this early a stage.
    2. He is young enough to be very resilient if his health is good otherwise.
    3. Stage 1 means localized so there is every expectation that the chemo and radiation can
    eradicate the tumor or perhaps some additional surgery can remove the remnants.

    The wound care VAC should accelerate the healing of his MediPort incision.

    It sounds like you have a temporary solution for nutrition at this point but members of the group will tell you it is very important to find a cancer center that has experience with lots of EC cases and surgery to get the best outcome.

    Did Mike's doctors discuss options beyond chemo and radiation? (e.g. Surgery?)

    If you give us some background related to Mike's current situation we can help with suggestions:

    1. How was Mike first diagnosed (what were his initial symptoms?)
    2. Where are you currently located and were is Mike receiving treatment?
    3. Did the doctors give you staging information that defined tumor size and depth of penetration into the esophagus (e.g. T1N0M0?)
    4. You mentioned Mike has a g-tube what food supplement are you currently using?

    Given Mike's early diagnosis and age I think you have every reason to be positive.

    I know getting a diagnosis of "CANCER" is frightening. When they told me I had EC it took me a few days to even believe it. But once you get past the initial shock and fear you find that there are people out there living with cancer every day. Not just "surviving" with cancer but living with cancer. And there are some here who were diagnosed at a stage much later than Mike's who currently are cancer free.

    We will be praying that Mike recovers from his infection rapidly and feels better soon.

    Best Regards,

    Paul Adams

    AKA "paul61"

    McCormick, South Carolina
  • mikesmom01
    mikesmom01 Member Posts: 27
    #4
    paul61 said:

    Welcome Mike's Mom
    Welcome Mike's Mom,

    Mike is very fortunate in several areas:

    1. It is very unusual for EC to be diagnosed in this early a stage.
    2. He is young enough to be very resilient if his health is good otherwise.
    3. Stage 1 means localized so there is every expectation that the chemo and radiation can
    eradicate the tumor or perhaps some additional surgery can remove the remnants.

    The wound care VAC should accelerate the healing of his MediPort incision.

    It sounds like you have a temporary solution for nutrition at this point but members of the group will tell you it is very important to find a cancer center that has experience with lots of EC cases and surgery to get the best outcome.

    Did Mike's doctors discuss options beyond chemo and radiation? (e.g. Surgery?)

    If you give us some background related to Mike's current situation we can help with suggestions:

    1. How was Mike first diagnosed (what were his initial symptoms?)
    2. Where are you currently located and were is Mike receiving treatment?
    3. Did the doctors give you staging information that defined tumor size and depth of penetration into the esophagus (e.g. T1N0M0?)
    4. You mentioned Mike has a g-tube what food supplement are you currently using?

    Given Mike's early diagnosis and age I think you have every reason to be positive.

    I know getting a diagnosis of "CANCER" is frightening. When they told me I had EC it took me a few days to even believe it. But once you get past the initial shock and fear you find that there are people out there living with cancer every day. Not just "surviving" with cancer but living with cancer. And there are some here who were diagnosed at a stage much later than Mike's who currently are cancer free.

    We will be praying that Mike recovers from his infection rapidly and feels better soon.

    Best Regards,

    Paul Adams

    AKA "paul61"

    McCormick, South Carolina

    thanks for the quick responses!
    Good afternoon Paul,

    Thank you both who have already posted a reply.

    I looked back at my post and it DOES look like stage one, however it's stage 4 and from what the oncologist says he is in operable. This cancer has spread into his stomach and lymph nodes as well. I'm also being told that his age is actually against him, that the younger a patient is the faster this particular cancer spreads. I want desperatley for him to go to MD Anderson or one of the CTCA's to be re-evaluated for a second opinion. Mike wants to be here at home (Texas)with family saying family is all that he has to hold onto other than God. I am so scared, and want another oncologist to see him. I've read all over the internet and everything else I can get my hands on trying to find something more positive. The team of doctors working with him are great and we never have to wait for anything, but they haven't seen this in a "younger" patient before either.

    I really appreciate the kindness and concern here. I need to communicate with people who "know" what this is like. So, thank you and you'll be hearing alot from me on here I can already feel a certain connection.
    Regards,
    Martha
  • paul61
    paul61 Member Posts: 1,391 Member
    #5
    mikesmom01 said:

    thanks for the quick responses!
    Good afternoon Paul,

    Thank you both who have already posted a reply.

    I looked back at my post and it DOES look like stage one, however it's stage 4 and from what the oncologist says he is in operable. This cancer has spread into his stomach and lymph nodes as well. I'm also being told that his age is actually against him, that the younger a patient is the faster this particular cancer spreads. I want desperatley for him to go to MD Anderson or one of the CTCA's to be re-evaluated for a second opinion. Mike wants to be here at home (Texas)with family saying family is all that he has to hold onto other than God. I am so scared, and want another oncologist to see him. I've read all over the internet and everything else I can get my hands on trying to find something more positive. The team of doctors working with him are great and we never have to wait for anything, but they haven't seen this in a "younger" patient before either.

    I really appreciate the kindness and concern here. I need to communicate with people who "know" what this is like. So, thank you and you'll be hearing alot from me on here I can already feel a certain connection.
    Regards,
    Martha

    Sorry I misunderstood the staging
    Martha,

    Sorry I misunderstood that staging. I thought is was odd that Mike had a g-tube as a Stage 1 diagnosis.

    However there are people in the group at Stage IV receiving treatment and making progress.

    I have heard positive things about MD Anderson. Getting a second opinion is key and of course investigation of clinical trails is another option.

    Prayers know no Staging and work miracles.

    Paul Adams

    AKA "paul61"

    McCormick, South Carolina
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    paul61 said:

    Sorry I misunderstood the staging
    Martha,

    Sorry I misunderstood that staging. I thought is was odd that Mike had a g-tube as a Stage 1 diagnosis.

    However there are people in the group at Stage IV receiving treatment and making progress.

    I have heard positive things about MD Anderson. Getting a second opinion is key and of course investigation of clinical trails is another option.

    Prayers know no Staging and work miracles.

    Paul Adams

    AKA "paul61"

    McCormick, South Carolina

    Hi again Martha,
    Well you do
    Hi again Martha,
    Well you do learn something new everyday! I did not know that a young age is against us with regards to ec! Darn it! I agree with Paul, MD Anderson does have an excellent reputation. There are quite a few people here that have gone there. There is also a chat room you can go onto through this site, there you can have live chat with a lot of people who have gone through all of the same experiences. I always advise to get a second opinion. My dad did, and he lived 10 more mos. longer than his first opinion.
    Yes we all do have a connection here, and we are glad to have you with us.
    Tina
  • survivorfam
    survivorfam Member Posts: 41
    #7
    Praying
    Martha,
    Just wanted you to know I am praying for you and your son. Sometimes that's what I need to hear to help me feel better.

    Jane
  • cjmac49
    cjmac49 Member Posts: 100
    #8
    mikesmom01 said:

    thanks for the quick responses!
    Good afternoon Paul,

    Thank you both who have already posted a reply.

    I looked back at my post and it DOES look like stage one, however it's stage 4 and from what the oncologist says he is in operable. This cancer has spread into his stomach and lymph nodes as well. I'm also being told that his age is actually against him, that the younger a patient is the faster this particular cancer spreads. I want desperatley for him to go to MD Anderson or one of the CTCA's to be re-evaluated for a second opinion. Mike wants to be here at home (Texas)with family saying family is all that he has to hold onto other than God. I am so scared, and want another oncologist to see him. I've read all over the internet and everything else I can get my hands on trying to find something more positive. The team of doctors working with him are great and we never have to wait for anything, but they haven't seen this in a "younger" patient before either.

    I really appreciate the kindness and concern here. I need to communicate with people who "know" what this is like. So, thank you and you'll be hearing alot from me on here I can already feel a certain connection.
    Regards,
    Martha

    Get a second opinion
    Martha,

    During the initial process I had the same feeling as Mike. I want to be home and I want to be near family, My wife - and other family members -pushed for s second opinion at a major medical center. I am so glad I did.
    I was given a more realistic staging, better treatment coordination and finally a minimally invasive esophagectomy. I am 21 months post surgery and doing OK.

    Push Mike to go to MDA. I'll be worth it.

    Jim
  • unclaw2002
    unclaw2002 Member Posts: 599
    #9
    survivorfam said:

    Praying
    Martha,
    Just wanted you to know I am praying for you and your son. Sometimes that's what I need to hear to help me feel better.

    Jane

    Martha urge your son as the
    Martha urge your son as the others have said to get a second opinion and if possible seek treatment at MD Anderson since it is near your home.

    Getting the best medical care from doctors who understand this cancer is critical to getting the best chance to survice, A cancer center like MD Anderson can give Mike the potential to enter a clinical trial that may save his life. He may be eligible to enter one of the trials which are using a new cancer drug that might save his life. Or they may based on their experience with esophageal offer you better staging information or other options. With only 16,000 cases a year it is unlikely a doctor at a regular hospital would be up on all the new options for esophageal cancer patients. That being said, good luck I have a stuborn cancer patient, my dad, so I understand that sometimes this is easier said than done.

    Best, Cindy
  • oriontj
    oriontj Member Posts: 375
    #10
    My husband was diagnosed
    My husband was diagnosed stage IV with one lymph node involved...his chemo was Erbitux and two others once a week followed by two days of hydration and daily chemo...all this for 6 weeks...Dec and April found no cancer...this could happen for your son also. I'm praying for him...29 is so young.

    orin
  • oriontj
    oriontj Member Posts: 375
    #11
    My husband was diagnosed
    My husband was diagnosed stage IV with one lymph node involved...his chemo was Erbitux and two others once a week followed by two days of hydration and daily chemo...all this for 6 weeks...Dec and April found no cancer...this could happen for your son also. I'm praying for him...29 is so young.

    orin
  • oriontj
    oriontj Member Posts: 375
    #12
    My husband was diagnosed
    My husband was diagnosed stage IV with one lymph node involved...his chemo was Erbitux and two others once a week followed by two days of hydration and daily chemo...all this for 6 weeks...Dec and April found no cancer...this could happen for your son also. I'm praying for him...29 is so young.

    orin
  • Unknown
    Unknown
    #13
    This comment has been removed by the Moderator
  • Ellie_E
    Ellie_E Member Posts: 50
    #14
    Welcome to our family
    Welcome to our family on this site. I'm so sorry that you and Mike have to be here. My husband, Jim, was dx last September with Stage IVb EC with mets to liver and many lymph nodes. His is also inoperable. So far, Jim's chemo consisted of Epirubicin, Oxalyplatin, and Xeloda. He is now on Cisplatin and CPT 11(Irinotecan). The only real reaction he is getting is tiredness and some neuropathy in his feet. He is continuing to fight this horrible disease and tries to lead some semblance of a "normal" life. Try to keep Mike sufficently hydrated. A few times Jim became severely dehydrated and needed fluids. The main thing is try to keep yours and Mike's hopes up. There are many Stage IVs here that are living with this beast. I constantly search the web and medical journals to see if there are any new treatments out there. Jim and I say to each other, we need to keep going until they find a magic bullet. Prayers are powerful!!!

    Ellie
  • dwhite0002
    dwhite0002 Member Posts: 126
    #15
    I am young, too
    I was diagnosed at age 32. I am now 35. Please hang in there. I would love to talk to you and your son, if you are interested.

    My contact info is: dwhite0002@aol.com

    Thoughts and prayers,

    David
    Hillsboro, OH
  • dragonflymom
    dragonflymom Member Posts: 46
    #16
    I'm sorry you have reason to
    I'm sorry you have reason to join us. This group is a fantastic source for patients and their families. I will pray for you and your son. I can't imagine how hard this must be for you.

    Hugs,
    Amy
  • mikesmom01
    mikesmom01 Member Posts: 27
    #17
    Tina Blondek said:

    Hi again Martha,
    Well you do
    Hi again Martha,
    Well you do learn something new everyday! I did not know that a young age is against us with regards to ec! Darn it! I agree with Paul, MD Anderson does have an excellent reputation. There are quite a few people here that have gone there. There is also a chat room you can go onto through this site, there you can have live chat with a lot of people who have gone through all of the same experiences. I always advise to get a second opinion. My dad did, and he lived 10 more mos. longer than his first opinion.
    Yes we all do have a connection here, and we are glad to have you with us.
    Tina

    Hello Tina
    Thank you for the reply. I am so sorry for the loss of your father, I know it must have been very difficult for you and your family. You sound like you have been thru alot and I am only beginning this journey with my son. It just seems like there is a new complication or challenge every day now. He is living with his dad and step mother and it's only about 15 minutes from me. I see him as much as possible and I'm still working. Today they're supposed to put in another MediPort. The wound from the removal of the last one is healing nicely with the VAC machine, but not totally healed yet. The next chemo is on the 24th,tentivally of course.
    I'll kee you posted, and thank you again.
    Martha
  • mikesmom01
    mikesmom01 Member Posts: 27
    #18
    dwhite0002 said:

    I am young, too
    I was diagnosed at age 32. I am now 35. Please hang in there. I would love to talk to you and your son, if you are interested.

    My contact info is: dwhite0002@aol.com

    Thoughts and prayers,

    David
    Hillsboro, OH

    very interested
    Hello David,

    This is Martha, I am Mike's mom. We just got him home and settled from surgery today, and I was reading some of these to him, he asked me if you had the same kind of cancer he had and I said probably yes since we're on the same thread for ec. I'll mention you to him again when he's more alert in the next day or so. I think he may want to talk to you. I will let you know and be praying for you both and all the others in the meantime.
    M
  • dwhite0002
    dwhite0002 Member Posts: 126
    #19
    mikesmom01 said:

    very interested
    Hello David,

    This is Martha, I am Mike's mom. We just got him home and settled from surgery today, and I was reading some of these to him, he asked me if you had the same kind of cancer he had and I said probably yes since we're on the same thread for ec. I'll mention you to him again when he's more alert in the next day or so. I think he may want to talk to you. I will let you know and be praying for you both and all the others in the meantime.
    M

    Please do contact me
    I want to help anyone I can, especially young people. Very few of us exsist with this disease! I will pray for him.

    -David

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