Herceptin - new treatment

JaneE2366
JaneE2366 Member Posts: 289 Member
edited March 2014 in Esophageal Cancer #1
Hi All,
As most of you know I am a caretaker for my husband Charlie who was diagnosed with stage iv EC in March. Mets to lymph nodes, lung, liver, and peritoneal cavity....therefore surgery is not an option. He has had 4 rounds of chemo, is in remission, and now takes Xeloda to try to keep him in remission. We went to the onc today and he had some news. The use of Herceptin (used in breast cancer) has shown a significant improvemnt in overall survival for patients with gastic cancers. Dr had Charlie's tumor tested and it is the right type (HER2.) So we are going to try it...as long as we can get the cost covered...we understand it is extremely expensive.
Thought you all might want to have this info in case it might apply to you. I don't know much more than I have told you but you may want to ask your drs about it.
Continuing to keep you all in my prayers.
Jane

Comments

  • kitten0385
    kitten0385 Member Posts: 248
    Herceptin
    Jane,
    That's awesome news!! They tested my tumor as well, but mine tested negative. Good luck!!
    Cathy
  • JaneE2366
    JaneE2366 Member Posts: 289 Member

    Herceptin
    Jane,
    That's awesome news!! They tested my tumor as well, but mine tested negative. Good luck!!
    Cathy

    how are you
    Cathy,
    Nice to hear from you...I have been thinking about you...you are always in my prayers.
    So I guess this isn't new "news?"
    How are things going with you?
    Stay strong.
    Jane
  • kitten0385
    kitten0385 Member Posts: 248
    JaneE2366 said:

    how are you
    Cathy,
    Nice to hear from you...I have been thinking about you...you are always in my prayers.
    So I guess this isn't new "news?"
    How are things going with you?
    Stay strong.
    Jane

    jane
    Things are going ok, slowly making progress...got my chest tube out today, hopefully having a small surgery tomorrow to put a drain tube somewhere in my abdomen to get rid of this ng tube. Still in the hospital, and just taking it one day at a time. Not sure how new the HER2 is, but I know they tested mine back in October of 08.
    Cathy
  • JaneE2366
    JaneE2366 Member Posts: 289 Member

    jane
    Things are going ok, slowly making progress...got my chest tube out today, hopefully having a small surgery tomorrow to put a drain tube somewhere in my abdomen to get rid of this ng tube. Still in the hospital, and just taking it one day at a time. Not sure how new the HER2 is, but I know they tested mine back in October of 08.
    Cathy

    interesting
    Cathy,
    That is interesting....the articles I found were all from this year so I thought it was brand new. Doesn't matter...just hope it works.
    So happy to hear you are making progress. You must be happy to get the chest tube out. And that is all you can do...it's all we all can do...just take it one day at a time.
    Take care...hope to hear you are home soon.
    Jane
  • emg09
    emg09 Member Posts: 228
    JaneE2366 said:

    interesting
    Cathy,
    That is interesting....the articles I found were all from this year so I thought it was brand new. Doesn't matter...just hope it works.
    So happy to hear you are making progress. You must be happy to get the chest tube out. And that is all you can do...it's all we all can do...just take it one day at a time.
    Take care...hope to hear you are home soon.
    Jane

    interesting!!
    I'm going to have my mom bring this up at their apt. on Thursday. This is such great news for you guys!!!

    Kitten - I hope you come home soon and they get that tube taken care of for you!!

    Erika
  • mumphy
    mumphy Member Posts: 440
    emg09 said:

    interesting!!
    I'm going to have my mom bring this up at their apt. on Thursday. This is such great news for you guys!!!

    Kitten - I hope you come home soon and they get that tube taken care of for you!!

    Erika

    I also find this interesting
    Hi Jane,

    Thanks for the info. When the remove Al's tumor I will ask them to test it! May be he will be able to use it as his post operation chemo.

    Kitten you sound like things are looking up. Hope you can go home soon.

    God Bless
    Kath
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    mumphy said:

    I also find this interesting
    Hi Jane,

    Thanks for the info. When the remove Al's tumor I will ask them to test it! May be he will be able to use it as his post operation chemo.

    Kitten you sound like things are looking up. Hope you can go home soon.

    God Bless
    Kath

    May not get the herceptin
    Hi All,
    I spoke with Charlie's dr's office yesterday to get an update on the Herceptin treatment and the nurse told me the foundation we applied to (I think it is the drug company's foundation) rejected our request.....I believe she said it was because they felt the foundation would not get reimbursed by the insurance co. I have to admit I don't understand it all....I plan to get all the info when we see the dr on our next visit. We were supposed to see the dr this week but we had to put it off until next week. I don't have the heart to tell Charlie the news....he will be so disappointed. On top of this, his mom just passed away on Sunday so we are leaving for NJ today. I will wait for the services to be over to tell him about the Herceptin. I just don't want to overwhelm him. The nurse did say that she wasn't even sure if our dr knew of the rejection.....he has been at a conference the last couple of days. She said don't be surprised if he takes this up with the foundation himself.....she told me once he wants something, he goes to extremes to get things done for his patients.....so I guess we still have a little hope.
    Next couple of days will be hard. Charlie never told his mom he was sick. She was 87 and always suffered from high blood pressure and he didn't want her worrying. We were going to see her this past summer when we traveled up north but Charlie was not feeling well enough and he felt she would know something was up due to his weight loss and hair loss. So we were planning on seeing her this coming Christmas since he feels and looks so much better....but I guess we should not have waited....but we can't change things and we both know she is in a better place. Sorry....got off the track a bit.....
    Continuing to pray for all of you.
    Stay strong,
    Jane
  • JaneE2366 said:

    May not get the herceptin
    Hi All,
    I spoke with Charlie's dr's office yesterday to get an update on the Herceptin treatment and the nurse told me the foundation we applied to (I think it is the drug company's foundation) rejected our request.....I believe she said it was because they felt the foundation would not get reimbursed by the insurance co. I have to admit I don't understand it all....I plan to get all the info when we see the dr on our next visit. We were supposed to see the dr this week but we had to put it off until next week. I don't have the heart to tell Charlie the news....he will be so disappointed. On top of this, his mom just passed away on Sunday so we are leaving for NJ today. I will wait for the services to be over to tell him about the Herceptin. I just don't want to overwhelm him. The nurse did say that she wasn't even sure if our dr knew of the rejection.....he has been at a conference the last couple of days. She said don't be surprised if he takes this up with the foundation himself.....she told me once he wants something, he goes to extremes to get things done for his patients.....so I guess we still have a little hope.
    Next couple of days will be hard. Charlie never told his mom he was sick. She was 87 and always suffered from high blood pressure and he didn't want her worrying. We were going to see her this past summer when we traveled up north but Charlie was not feeling well enough and he felt she would know something was up due to his weight loss and hair loss. So we were planning on seeing her this coming Christmas since he feels and looks so much better....but I guess we should not have waited....but we can't change things and we both know she is in a better place. Sorry....got off the track a bit.....
    Continuing to pray for all of you.
    Stay strong,
    Jane

    This comment has been removed by the Moderator
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    JaneE2366 said:

    May not get the herceptin
    Hi All,
    I spoke with Charlie's dr's office yesterday to get an update on the Herceptin treatment and the nurse told me the foundation we applied to (I think it is the drug company's foundation) rejected our request.....I believe she said it was because they felt the foundation would not get reimbursed by the insurance co. I have to admit I don't understand it all....I plan to get all the info when we see the dr on our next visit. We were supposed to see the dr this week but we had to put it off until next week. I don't have the heart to tell Charlie the news....he will be so disappointed. On top of this, his mom just passed away on Sunday so we are leaving for NJ today. I will wait for the services to be over to tell him about the Herceptin. I just don't want to overwhelm him. The nurse did say that she wasn't even sure if our dr knew of the rejection.....he has been at a conference the last couple of days. She said don't be surprised if he takes this up with the foundation himself.....she told me once he wants something, he goes to extremes to get things done for his patients.....so I guess we still have a little hope.
    Next couple of days will be hard. Charlie never told his mom he was sick. She was 87 and always suffered from high blood pressure and he didn't want her worrying. We were going to see her this past summer when we traveled up north but Charlie was not feeling well enough and he felt she would know something was up due to his weight loss and hair loss. So we were planning on seeing her this coming Christmas since he feels and looks so much better....but I guess we should not have waited....but we can't change things and we both know she is in a better place. Sorry....got off the track a bit.....
    Continuing to pray for all of you.
    Stay strong,
    Jane

    Got the Herceptin!
    Hi All.....here is the update on the Herceptin.
    I never told Charlie the foundation turned us down. I guess I was praying for a miracle and we got it. The dr got the insurance company to cover the Herceptin. So we started it today! The dr also wants to increase the Xeloda since Charlie is doing well on it. We will start increasing it tomorrow but we will watch it carefully. Charlie has been experiencing some belly pain since he started the Xeloda....and that can be a side effect. Right now it is tolerable but we will need to watch it.
    Continuing to pray for all....stay strong.
    Jane
  • kitten0385
    kitten0385 Member Posts: 248
    JaneE2366 said:

    Got the Herceptin!
    Hi All.....here is the update on the Herceptin.
    I never told Charlie the foundation turned us down. I guess I was praying for a miracle and we got it. The dr got the insurance company to cover the Herceptin. So we started it today! The dr also wants to increase the Xeloda since Charlie is doing well on it. We will start increasing it tomorrow but we will watch it carefully. Charlie has been experiencing some belly pain since he started the Xeloda....and that can be a side effect. Right now it is tolerable but we will need to watch it.
    Continuing to pray for all....stay strong.
    Jane

    :0)
    That's awesome news Jane!!! Just another tool to fight the beast! yes!!

    Cathy
  • JaneE2366 said:

    Got the Herceptin!
    Hi All.....here is the update on the Herceptin.
    I never told Charlie the foundation turned us down. I guess I was praying for a miracle and we got it. The dr got the insurance company to cover the Herceptin. So we started it today! The dr also wants to increase the Xeloda since Charlie is doing well on it. We will start increasing it tomorrow but we will watch it carefully. Charlie has been experiencing some belly pain since he started the Xeloda....and that can be a side effect. Right now it is tolerable but we will need to watch it.
    Continuing to pray for all....stay strong.
    Jane

    This comment has been removed by the Moderator
  • This comment has been removed by the Moderator
  • Hope_Faith
    Hope_Faith Member Posts: 150
    JaneE2366 said:

    Got the Herceptin!
    Hi All.....here is the update on the Herceptin.
    I never told Charlie the foundation turned us down. I guess I was praying for a miracle and we got it. The dr got the insurance company to cover the Herceptin. So we started it today! The dr also wants to increase the Xeloda since Charlie is doing well on it. We will start increasing it tomorrow but we will watch it carefully. Charlie has been experiencing some belly pain since he started the Xeloda....and that can be a side effect. Right now it is tolerable but we will need to watch it.
    Continuing to pray for all....stay strong.
    Jane

    I'm so glad the insurance changed their mind and gave Charlie the Herceptin! I hope that he is going through minimal side affects and is handling his treatments well.
    Thinking of you and praying for you,
    Shelly