Everything's happening so fast!

mdemetrius
mdemetrius Member Posts: 22
edited March 2014 in Esophageal Cancer #1
Hi All!
Hopefully you can help! My dad has had horrible reflux for years and was just diagnosed with stage 4 adenocarcinoma of the esophagus. Not really sure why he's a stage 4 since no other organs have been affected, but lymph nodes are involved. Anyway, it's been a 3 week whirlwind of tests, port placement, and stent. He is not a candidate for surgery so he will be taking a 3 chemo cocktail for 6 weeks starting on monday. He would like to know about people's experiences with chemo. When did you start to feel the side effects? What side effects affected you the most? Are there certain medications that are better and treating the side effects? Are there any home remedies that can make him feel more comfortable? He is ready to "fight fire with fire" but its still an anxious time for all of us. The doctor did not discuss any prognosis with him. From what I'm reading on the internet, it doesnt look too good, but we really believe that everyone is different. I know he'd be encouraged to find and talk to people who have at least been able to fight for at least a year. That would bring some kind of hope. Any advice you could give would be appreciated. I know he would like to find a few people in his situation that he can find support with.
Thanks!
Marissa

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • cfight
    cfight Member Posts: 69
    #3
    Hi Marissa,
    My father was
    Hi Marissa,

    My father was diagnosed with stage IV EC in December so I understand the whirlwind you're a part of right now. It does get better once everything settles in. I can't recall the chemo cocktail he started with, one drug was xeloda. He had a total of 3 drugs and received them via port for 3 weeks and then took a week off and then started the cycle again. His biggest side effect has been fatigue. He has good days where he can drive himself to treatments and mow the lawn. On other days his body tells him to rest which for my dad means spending time watching TV. Everyone responds differently to chemo -- did the doc review side effects and what you should look for? The nurses will also be a wonderful resource for you.

    I am by no means an expert, but if you'd like to talk offline, let me know. My email address is carolynwhipple@juno.com.

    Everyone on this site is wonderful and has great knowledge and experience with the disease. Their words of encouragement and hope have helped me through the past 6 months!

    Please know your father has support and he's not alone in this journey.

    carolyn
  • mdemetrius
    mdemetrius Member Posts: 22
    #4
    cfight said:

    Hi Marissa,
    My father was
    Hi Marissa,

    My father was diagnosed with stage IV EC in December so I understand the whirlwind you're a part of right now. It does get better once everything settles in. I can't recall the chemo cocktail he started with, one drug was xeloda. He had a total of 3 drugs and received them via port for 3 weeks and then took a week off and then started the cycle again. His biggest side effect has been fatigue. He has good days where he can drive himself to treatments and mow the lawn. On other days his body tells him to rest which for my dad means spending time watching TV. Everyone responds differently to chemo -- did the doc review side effects and what you should look for? The nurses will also be a wonderful resource for you.

    I am by no means an expert, but if you'd like to talk offline, let me know. My email address is carolynwhipple@juno.com.

    Everyone on this site is wonderful and has great knowledge and experience with the disease. Their words of encouragement and hope have helped me through the past 6 months!

    Please know your father has support and he's not alone in this journey.

    carolyn

    Thank you!
    you're the best! i reeeaallly appreciate your support! i will definitely need a supportive ear to bounce things off of. we have been asking other people with cancer about their treatments, but these people have had all different types of cancer. that's why i feel so lucky to have found this site! I will definitely email you. my email address is madfreedom2003@yahoo.com
  • Unknown
    Unknown
    #5
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    Welcome
    Hi Marissa
    Sorry to hear about your dad, but with his positive attitude and his will to fight, he should do just fine. My dad was dx in 11/08 with ec stage IV. He was not a candidate for surgery, but he did do 6 weeks of chemo and radiation. The chemo was Xeloda. He did very well with this chemo and hardly had any side effects. In Jan 09 his pet scan showed a considerable amount of shrinkage of the tumor. Dr. said he was in remission! In December 09 he had to get a stent put in esophagus to open it up more due to scar tissue. This worked out very well. But...in the middle of December 09 he had severe pain on his right side. Dr thought possible gall bladder. Did ultra sound to unfortunately find lesions on the liver. The primary cancer of the esophagus metastized to his liver. My dad fought this battle and did well for 13 mos. The last 3 months of his life were the worst. My dad passed away on March 9, 2010. The mets to his liver is what killed him. Not to discourage you. If your dad can get chemo and radiation to shrink the tumor, and then have the surgery to remove the tumor, he will be just fine. It is a long, hard, bumpy, roller coaster ride of many ups and downs, but it can be beat!!! Best of luck to you your dad and your family. Keep us updated. Peace be with you.
    Tina
  • mdemetrius
    mdemetrius Member Posts: 22
    #7
    Tina Blondek said:

    Welcome
    Hi Marissa
    Sorry to hear about your dad, but with his positive attitude and his will to fight, he should do just fine. My dad was dx in 11/08 with ec stage IV. He was not a candidate for surgery, but he did do 6 weeks of chemo and radiation. The chemo was Xeloda. He did very well with this chemo and hardly had any side effects. In Jan 09 his pet scan showed a considerable amount of shrinkage of the tumor. Dr. said he was in remission! In December 09 he had to get a stent put in esophagus to open it up more due to scar tissue. This worked out very well. But...in the middle of December 09 he had severe pain on his right side. Dr thought possible gall bladder. Did ultra sound to unfortunately find lesions on the liver. The primary cancer of the esophagus metastized to his liver. My dad fought this battle and did well for 13 mos. The last 3 months of his life were the worst. My dad passed away on March 9, 2010. The mets to his liver is what killed him. Not to discourage you. If your dad can get chemo and radiation to shrink the tumor, and then have the surgery to remove the tumor, he will be just fine. It is a long, hard, bumpy, roller coaster ride of many ups and downs, but it can be beat!!! Best of luck to you your dad and your family. Keep us updated. Peace be with you.
    Tina

    1st time in the ER...
    There is one good thing about it though. We get bumped up on the list because of my dad's diagnosis. Feel kind of bad since there are people in visibly more discomfort than my dad. He had a stent put in a week ago so that he was actually able to swallow food. That worked out great! But now the problem is that he can't eat at all! He has nooo appetite. He is getting between 400-600 calories per day so we're here now to get iv fluids. He will drink about 1 1/2 bottle of glucerna (for diabetics), and he's full for the whole day! Everyone says he should just try to eat more, blah blah blah, but the oncologist said, and we agree, that the large tumor in the lower third of his esophagus and top of his stomach, is causing him to feel this sense of fullness when is stomach is virtually empty!

    My mom is a nutritionist...thank God, so she knows all the tricks to pack in as many nutrients she can in the little bit he can eat. We called the oncologist and gastroenterologist on call, and they both said that told this was a good idea. Even more concerning is that he is supposed to start his first chemo treatment on Monday! Don't know if that's going to happen because we don't really think it's a good idea to have the first chemo cocktail being so dehydrated and malnourished.

    Is this what we're going to be facing? This is already stressful, and we've only just begun!

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