Chemo maintenance

cfight
cfight Member Posts: 69
edited March 2014 in Esophageal Cancer #1
Hi! My father was diagnosed with stage iv non operable esophageal cancer in December. His most recent pet scan has shown complete tumor reduction which is great. He finishes treatment in June and his oncologist said that he'll be on chemo maintenance forever. Does anyone have experience with this type of chemo protocol? I'm going to my dad's next oncology appointment at the end of May and I want to be armed with as much information. Any information or experience is greatly appreciated!

This site has been a wonderful resource and support mechanism for me. The CSN is an inspiring group of people -- thank you!

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Hi Cfight!
    Long time no see.
    Hi Cfight!
    Long time no see. Excellent news for dad! I have heard of this kind of protocol What I think the dr means is that the chemo will not be a cure, but in order to keep the cancer in remission, he will have to continue with the chemo treatments. This is a way of prolonging your dad's life. I would also suggest getting a second opinion on this dx. What one ongologist says, another might say differently. God bless you, your dad, and family. You are lucky to still have your dad. I lost mine to ec in March. Cherish each moment, and live for today. Peace to all of you.
    Tina
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • cfight
    cfight Member Posts: 69
    #4
    Tina Blondek said:

    Hi Cfight!
    Long time no see.
    Hi Cfight!
    Long time no see. Excellent news for dad! I have heard of this kind of protocol What I think the dr means is that the chemo will not be a cure, but in order to keep the cancer in remission, he will have to continue with the chemo treatments. This is a way of prolonging your dad's life. I would also suggest getting a second opinion on this dx. What one ongologist says, another might say differently. God bless you, your dad, and family. You are lucky to still have your dad. I lost mine to ec in March. Cherish each moment, and live for today. Peace to all of you.
    Tina

    Thanks, Tina. Yes, long time
    Thanks, Tina. Yes, long time no see. I've found that certain days/weeks are better than others. As my dad finishes his chemo treatments, a new door is opening on this journey. I appreciate your feedback and advice--living one day at a time has been the most challenging for me. I'm so sorry for the loss of your father-- it seems like he had wonderful supportive family by his side.

    I work at the Alzheimer's Association and a very inspirational volunteer once said to me, "this disease sucks, but the one good thing is the people you meet and friendships you develop along the way."

    Thank you again!
  • cfight
    cfight Member Posts: 69
    #5
    unknown said:

    This comment has been removed by the Moderator

    This is so helpful, thank
    This is so helpful, thank you! I've been following posts behind the scene, but I've gotten lost with everyone's stories and stages. I'll do my searching and hook into everyone with my questions. Thanks so much again!
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #7
    chemo forever
    cfight,
    My husband, Charlie, had 4 rounds of infused chemo.....Cisplantin, Taxotere, and 5-FU. He did those in April, May, June and July of last year. He started oral 5-FU (Xeloda) last Aug and has been on it ever since.....will be on it until he becomes immune to it....which will happen. He is on it for 2 weeks, and then is off 1 week....then repeats the cycle. Charlie will start his 14th cycle next Monday. It is a way of life. You learn to live with it....he has good days and bad days. One cycle he had to stop it early since it was making him too ill.....sores in his mouth, nose.....and he was having trouble with his eyes. They are small issues in the scheme of things. You do what you have to do to stay in remission. His last PET (May 10th) is showing some activity in the esophagus and stomach....we don't know yet if this is a sign it is returning. If that is the case, "the big guns" will come out again and we will fight it with a more agressive chemo. We are praying we don't have to do that yet. We don't want to use up all our ammunition yet. I hope they tested your dad's tumor for to see if it is HER-2 positive. If not, have it done. If it is, you may be able to get Herceptin. Charlie has had 10 rounds of this....it helps keep the EC in remission.
    I will keep you and your dad in my prayers.
    Stay strong,
    Jane
  • cfight
    cfight Member Posts: 69
    #8
    unknown said:

    This comment has been removed by the Moderator

    Thank you, Sherri. My father
    Thank you, Sherri. My father was tested for Her2 and was negative. Interestingly enough, I found out about that test through this network. His oncologist said there may be other genes to test for, but didn't recommend it unless there was chemo resistance.

    This type of chemo protocol is new for me... most of my other family members had their treatments which placed the cancer in remission. My father fought cancer for the first time 30 years ago when he had non-Hodgkins lymphoma. I'm not sure if that will impact the type and dose of chemo he receives.

    I'm glad to hear that breaks MAY be allowed. My dad has been fortunate and I'm grateful for every day he's here. You and Jim are in my thoughts. Thank you for your outreach!

    Carolyn
  • cfight
    cfight Member Posts: 69
    #9
    JaneE2366 said:

    chemo forever
    cfight,
    My husband, Charlie, had 4 rounds of infused chemo.....Cisplantin, Taxotere, and 5-FU. He did those in April, May, June and July of last year. He started oral 5-FU (Xeloda) last Aug and has been on it ever since.....will be on it until he becomes immune to it....which will happen. He is on it for 2 weeks, and then is off 1 week....then repeats the cycle. Charlie will start his 14th cycle next Monday. It is a way of life. You learn to live with it....he has good days and bad days. One cycle he had to stop it early since it was making him too ill.....sores in his mouth, nose.....and he was having trouble with his eyes. They are small issues in the scheme of things. You do what you have to do to stay in remission. His last PET (May 10th) is showing some activity in the esophagus and stomach....we don't know yet if this is a sign it is returning. If that is the case, "the big guns" will come out again and we will fight it with a more agressive chemo. We are praying we don't have to do that yet. We don't want to use up all our ammunition yet. I hope they tested your dad's tumor for to see if it is HER-2 positive. If not, have it done. If it is, you may be able to get Herceptin. Charlie has had 10 rounds of this....it helps keep the EC in remission.
    I will keep you and your dad in my prayers.
    Stay strong,
    Jane

    Hi Jane,
    Thank you for
    Hi Jane,

    Thank you for sharing your story. I've been reading your posts... they are very inspiring and have given me hope. I appreciate your feedback-- I'm not sure what my father's options are since he's not Her=2 positive. I may ask my parents to get a second opinion on the chemo maintenance plan. I live in Boston and there's so many resources here in regard to cancer care/treatment. I'll continue to stay updated with your posts and keep both of you in my thoughts.

    Thanks again for sharing your positive stories and giving me some idea of what may be ahead of us!

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