Now stage IV A

2»

Comments

  • Unknown
    Unknown
    #22
    NikiMo said:

    ACOR?
    HI Paul,
    Is this from the ACOR listserve? I was so thankful when I stumbled upon the service. It gives me hope to read the emails each night. There are a number of long term survivors, a couple folks living with reoccurance, and even a fellow who is 6yrs NED from stage 4B. I was starting to lose hope there for awhile until I found ACOR. I don't hear anyone mention it on this board. I think it would give some people hope who may be struggling right now. Thanks for sharing this with Joel.

    Niki
    Wife to Jeff T2N1M0
    Ivor Lewis 9/6/11

    This comment has been removed by the Moderator
  • Callaloo
    Callaloo Member Posts: 135
    #23
    Joel C said:

    Not what we hoped for.
    I received my biopsy results and they confirm I have recurrence. The right paratracheal lymph node tested positive for malignant cells, this node is considered distant metastases. I have a meeting with my local oncologist tomorrow and a meeting with an oncologist at Dana Farber in Boston on 9/27. At this point I really don’t see the value in having my body beat down even further with additional chemo that won’t likely change the inevitable. I’ll keep an open mind and see what the doctors have to say and then make a decision. Thank you for all the support I appreciate it.

    We’ll see what happens,
    Joel

    You have options
    Joel, you can read my profile for my history, but bottom line is, I had a recurrence and elected to take Xeloda as a single agent. All the clavicular and unguinal nodes disappeared after the first round of treatment, with very little in the way of side effects. YOu might get similar results.

    unfortunately for me, I have some retroperitoneal nodes and possible metastasis to the adrenal gland which have been a little more persistent, so I'm continuing chemo, now going on my third round, which is having an adverse affect on my quality of life, but nothing like fullblown chemo and radiation did last year, and I'm dealing with it.


    Lu
  • unclaw2002
    unclaw2002 Member Posts: 599
    #24
    Joel C said:

    Not what we hoped for.
    I received my biopsy results and they confirm I have recurrence. The right paratracheal lymph node tested positive for malignant cells, this node is considered distant metastases. I have a meeting with my local oncologist tomorrow and a meeting with an oncologist at Dana Farber in Boston on 9/27. At this point I really don’t see the value in having my body beat down even further with additional chemo that won’t likely change the inevitable. I’ll keep an open mind and see what the doctors have to say and then make a decision. Thank you for all the support I appreciate it.

    We’ll see what happens,
    Joel

    Joel,
    I am so sorry to hear
    Joel,

    I am so sorry to hear the results of the biopsy. Just to remind you - in case you haven't already had the tumor tested for the HER2 gene you should request that test. Depending on the results it might give you another treatment option.

    You will be in my thoughts and prayers as you consult with your doctors and family about the next stage of your journey.

    Hugs,
    Cindy
  • json_2011
    json_2011 Member Posts: 100
    #25
    Prayers your way Joel. Let
    Prayers your way Joel. Let us know.
  • Joel C
    Joel C Member Posts: 174
    #26
    json_2011 said:

    Prayers your way Joel. Let
    Prayers your way Joel. Let us know.

    Thank you guys,
    Thank you very much for each and every reply. I will take each suggestion under advisement. Cindy, per your suggestion I’ve been researching HER2 and will most definitely run it by my oncologist at Dana-Farber in Boston.

    Today I received a call from the surgeon that did my MIE as well as the biopsy on the metastatic node. He feels there’s no value in just removing the node based on the fact it is distant and there is almost certainly microscopic disease in other locations. He recommended working with my oncologists on a systemic approach. I met with my local oncologist and he recommended treating with palliative chemo when it becomes necessary. He does not want to start the chemo now because I still feel pretty good and at this point chemo would not improve my quality of life. When the disease progresses to the point that it’s becoming a problem then we would start chemo as a palliative treatment to the symptoms. He also encouraged me to meet with the experts at Dana Farber to see if they are aware of any curative options. My appointment at Dana Farber is on 9/27.

    Thanks again,
    Joel
  • jojoshort
    jojoshort Member Posts: 230 Member
    #27
    Joel C said:

    Thank you guys,
    Thank you very much for each and every reply. I will take each suggestion under advisement. Cindy, per your suggestion I’ve been researching HER2 and will most definitely run it by my oncologist at Dana-Farber in Boston.

    Today I received a call from the surgeon that did my MIE as well as the biopsy on the metastatic node. He feels there’s no value in just removing the node based on the fact it is distant and there is almost certainly microscopic disease in other locations. He recommended working with my oncologists on a systemic approach. I met with my local oncologist and he recommended treating with palliative chemo when it becomes necessary. He does not want to start the chemo now because I still feel pretty good and at this point chemo would not improve my quality of life. When the disease progresses to the point that it’s becoming a problem then we would start chemo as a palliative treatment to the symptoms. He also encouraged me to meet with the experts at Dana Farber to see if they are aware of any curative options. My appointment at Dana Farber is on 9/27.

    Thanks again,
    Joel

    Best care
    Joel, you'll get the best care in the world at Dana Farber. Our onco is affiliated with them; Steve was tested right from the get-go for the HER-2 gene, although he was negative.
    You will have options; perhaps you can go on their website and do some research before you go on 9/27. Wishing you all the best,
    Jo-Ann
  • AngieD
    AngieD Member Posts: 493
    #28
    jojoshort said:

    Best care
    Joel, you'll get the best care in the world at Dana Farber. Our onco is affiliated with them; Steve was tested right from the get-go for the HER-2 gene, although he was negative.
    You will have options; perhaps you can go on their website and do some research before you go on 9/27. Wishing you all the best,
    Jo-Ann

    Joel and ACOR
    Joel, I'm very sorry to hear your most recent news. I think it is very wise that you are getting multiple opinions and finding out what all your options are and the pros and cons of each before making any decisions. You and your family will certainly be in my thoughts and prayers.

    Also, I definitely agree with Paul and Nikki's comments on the ACOR forum. I discovered them fairly early on in my husband's beginning fight with Stage IV EC in July of this year. In addition to the one Paul mentioned, there are numerous Stage IV's who have never had surgery and are multiple year survivors. One was diagnosed in 2004 with liver mets, had treatment, was clear, had recurrence in 2006, again treated and has been NED since. Another was diagnosed in 2005 with mets in larynx and groin lymph nodes. Was treated, OK, monster recurrence in 2007, treated again and NED since.
    It wasn't easy, certainly, and I'm sure not everyone would make the choices they did. However, knowing there are beginning to be some success stories with extended life of good quality with a stage IV diagnosis has done wonders for my perception of hope and possibilities and makes the "one day at a time" easier.
  • chemosmoker
    chemosmoker Member Posts: 501
    #29
    Joel C said:

    Not what we hoped for.
    I received my biopsy results and they confirm I have recurrence. The right paratracheal lymph node tested positive for malignant cells, this node is considered distant metastases. I have a meeting with my local oncologist tomorrow and a meeting with an oncologist at Dana Farber in Boston on 9/27. At this point I really don’t see the value in having my body beat down even further with additional chemo that won’t likely change the inevitable. I’ll keep an open mind and see what the doctors have to say and then make a decision. Thank you for all the support I appreciate it.

    We’ll see what happens,
    Joel

    Wish I could zap it away for you...
    Joel,
    I am sorry to have just read this follow up and that yor biopsies came back positive. What an oxymoron to use the word 'positive' for such a thing anyway.

    We are all here for you, no matter WHAT you decide is the right way to proceed for your care.

    I support you either way. I will be praying for good options for you on 9/27 and until then as well.

    Hang in there, as there is a LOT of good living left to do still!

    With all of our love,

    -Eric and Michelle
    Stage IVb and chemo-free

Discussion Boards