Whitney

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fredswilma
fredswilma Member Posts: 185
in Esophageal Cancer #1
Hi
Just wanted to see how your day went, I know you visited the Onc today, concerned.
Ann

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  • Wpturner05
    Wpturner05 Member Posts: 114
    #2
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    Friday
    Ann,

    Our day on Friday was ok. It was a very sobering appointment to say the least. At this point in the game, we all decided, doctors included, that chemo WOULD not be part of Kevin's treatment going forward. It has not worked yet and we are not going to even try it - as we know that it would be voluntarily poisoning him for no benefit. So that option is off the table. Another option was to move to palliative/Hospice, which Kevin is not quite ready to do. There were a few options of trials that we looked at and Kevin and I eliminated all except for one. There is a trial at Memorial Sloan Kettering involving Sorafenib. It is a stabilizing drug that is classified as a kinase inhibitor - a protein that is necessary for the cancer to continue to grow. The trial is actually being run by the oncologist that Kevin sees there. We have decided to keep a close tab on how the treatmant drug affects him and if the side effects become too much - he will stop. There is nothing, NOTHING, at this point that is worth dramatically decreasing his quality of life. He will try it and hope to manage the side effects. Dr. Ilson, the primay investigator, said that he has seen metastatice EC stable for almost a year in a few patients. We are trying to get Kevin through to the spring if possible - our son makes his first Holy Communion the first weekend of May.

    Kevin and I are traveling up to Sloan tomorrow for a 1pm appointment to do preliminary testing, consent and meet with Dr. Ilson to discuss the trial further. Once that is complete, Kevin should be able to start the sorafenib in 2 weeks . . .

    Sorry for the delay in getting back to you - It has been a bit crazy in my house:)

    Take Care,

    Sincerely,
    Whitney
  • jax568
    jax568 Member Posts: 57
    #3
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    Wpturner05 said:

    Friday
    Ann,

    Our day on Friday was ok. It was a very sobering appointment to say the least. At this point in the game, we all decided, doctors included, that chemo WOULD not be part of Kevin's treatment going forward. It has not worked yet and we are not going to even try it - as we know that it would be voluntarily poisoning him for no benefit. So that option is off the table. Another option was to move to palliative/Hospice, which Kevin is not quite ready to do. There were a few options of trials that we looked at and Kevin and I eliminated all except for one. There is a trial at Memorial Sloan Kettering involving Sorafenib. It is a stabilizing drug that is classified as a kinase inhibitor - a protein that is necessary for the cancer to continue to grow. The trial is actually being run by the oncologist that Kevin sees there. We have decided to keep a close tab on how the treatmant drug affects him and if the side effects become too much - he will stop. There is nothing, NOTHING, at this point that is worth dramatically decreasing his quality of life. He will try it and hope to manage the side effects. Dr. Ilson, the primay investigator, said that he has seen metastatice EC stable for almost a year in a few patients. We are trying to get Kevin through to the spring if possible - our son makes his first Holy Communion the first weekend of May.

    Kevin and I are traveling up to Sloan tomorrow for a 1pm appointment to do preliminary testing, consent and meet with Dr. Ilson to discuss the trial further. Once that is complete, Kevin should be able to start the sorafenib in 2 weeks . . .

    Sorry for the delay in getting back to you - It has been a bit crazy in my house:)

    Take Care,

    Sincerely,
    Whitney

    Please keep us posted
    I am at Sloan now been here since the am. It's 3 now, don't know if you would still be here. I wish I would have checked the boards earlier.
    I hope all goes well with the appointment and without frustration. Please let us know, think of you often.

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