Recurrent EC without Mets, now taking Nexavar anyone else on Nexavar.

abliveoak
abliveoak Member Posts: 3
in Esophageal Cancer #1

I was diagnosed Sept. 1,2011 after a scope due to inability to swallow solid foods. After 28 days of radiation and chemo, I had a Esopghogectomy Dec. 19,2011 and recieved another round of chemo in March and April 2012. After gaining weight and feeling much better recieved a PET scan and EGD and biopsy and was told there was a small tumor at the resection juncture. No longer a surgical candidate, I was started on a oral agent Nexavar in October and am continuing the Nexavar. So far there has not been any thing detected in 2 CT Scans, but it is also noted that due to the size it was was not seen in earlier CT Scans.

Is there anyone else on the Nexavar, what has your experience been? My blood pressure went up and is being controlled with drugs. Have had sporadic cases of Nausea and the desire to vomit but all I can do, is gag and dry heave. Neuropathy in my feet and recently a loss of appitite.

Comments

  • Bobs1wife
    Bobs1wife Member Posts: 150
    #2

    Hello, I am so sorry you are going through these scary times. My heart is with you.  It seems there is little information about this issue.  My husband had a recurrence at the site of resection. It was on the outside of the esophagus so was not detected early with scope, where, as I understand it, many recurrences at the site happen, on the outside.  His desire was for agressive treatment, so in honoring his wishes, and since there was no other involvement, he opted for surgery as it did still offer hope for him. Unfortunately, it could not be seen on scan, and the close proximity of everything he was found to have trachea and aorta involvement.  But, if that had not been the case I think he may have had a very different outcome.

    I am not advocating for surgery, but just wanted you to know that I think every person is different, every facility different, and in my husband's case his desire was to once again become cancer free, if possible. His surgeon honored that and fought along with him every step of the way. Your desire may be not to consider surgery, even if they were to offer it, but just wanted to let you know what happened with us. It seems that with EC there are very many variables. Linda

     

  • abliveoak
    abliveoak Member Posts: 3
    #3
    Bobs1wife said:

    Hello, I am so sorry you are going through these scary times. My heart is with you.  It seems there is little information about this issue.  My husband had a recurrence at the site of resection. It was on the outside of the esophagus so was not detected early with scope, where, as I understand it, many recurrences at the site happen, on the outside.  His desire was for agressive treatment, so in honoring his wishes, and since there was no other involvement, he opted for surgery as it did still offer hope for him. Unfortunately, it could not be seen on scan, and the close proximity of everything he was found to have trachea and aorta involvement.  But, if that had not been the case I think he may have had a very different outcome.

    I am not advocating for surgery, but just wanted you to know that I think every person is different, every facility different, and in my husband's case his desire was to once again become cancer free, if possible. His surgeon honored that and fought along with him every step of the way. Your desire may be not to consider surgery, even if they were to offer it, but just wanted to let you know what happened with us. It seems that with EC there are very many variables. Linda

     

    Thanks for your response. My recurrence was on the inside but the surgeon did recommend surgery, they referred me to the oncologist who is prescribing the Nexavar, which is supposed to stop the growth, with the hope of something new coming along. Additional radiation is possible but there is a risk of perforating the esophagus. So I have elected to go on the Nexavar until there is either another option or if there is any growth I may take a chance on the radiation. The Nexavar is in a clinical trial in NY, I am in SC and was hoping to get aresponse from someone also on the Nexavar.

  • abliveoak
    abliveoak Member Posts: 3
    #4
    Bobs1wife said:

    Hello, I am so sorry you are going through these scary times. My heart is with you.  It seems there is little information about this issue.  My husband had a recurrence at the site of resection. It was on the outside of the esophagus so was not detected early with scope, where, as I understand it, many recurrences at the site happen, on the outside.  His desire was for agressive treatment, so in honoring his wishes, and since there was no other involvement, he opted for surgery as it did still offer hope for him. Unfortunately, it could not be seen on scan, and the close proximity of everything he was found to have trachea and aorta involvement.  But, if that had not been the case I think he may have had a very different outcome.

    I am not advocating for surgery, but just wanted you to know that I think every person is different, every facility different, and in my husband's case his desire was to once again become cancer free, if possible. His surgeon honored that and fought along with him every step of the way. Your desire may be not to consider surgery, even if they were to offer it, but just wanted to let you know what happened with us. It seems that with EC there are very many variables. Linda

     

    Thanks for your response. My recurrence was on the inside but the surgeon did recommend surgery, they referred me to the oncologist who is prescribing the Nexavar, which is supposed to stop the growth, with the hope of something new coming along. Additional radiation is possible but there is a risk of perforating the esophagus. So I have elected to go on the Nexavar until there is either another option or if there is any growth I may take a chance on the radiation. The Nexavar is in a clinical trial in NY, I am in SC and was hoping to get aresponse from someone also on the Nexavar.

Discussion Boards