Stage IV EC is not "one-size-fits-all". Very thankful for docs who recogniize this

AngieD
AngieD Member Posts: 493
in Esophageal Cancer #1
There are many varieties of Stage IV EC patients and many responses to treatment. Here is just our story, so far, if anyone is interested.

My husband was diagnosed in June 2011 with Stage IV EC; no other organs were involved but distant supraclavicular nodes were. Our oncologist NEVER gave him a time limit, and we never asked. She said the goal was the best quality of life for the longest possible time, and we made that our goal also, with lots of small goals scattered along the way. He had 7 rounds of Oxaliplatin and Xeloda between July and Christmas. He responded well with his swallowing issues gone after the 1st week of chemo and improving periodic scans. We were able to take a wonderful 16 day Mediterranean Cruise in late Oct/ early Nov and continue with our comfortable retired life. We went to exercise classes together and he continued with his RC Airplane Club activities, etc.

He had a PET/CT scan on Dec 27. The onco said if she had just ordered the CT, she would have said things were stable and he could take a chemo break. However, the PET showed a little more lymph node activity, so the plan was to have him start Taxol Jan 17.

On Jan 16, he began coughing and having trouble breathing. A trip to the ER and many tests later revealed he needed cardiac bypass surgery (no previous cardiac history or issues), We were transferred to the University of Kansas Hospital Center for Advance Heart Care in Kansas City. Thankfully, the cardiac-thoracic surgeon did not just do a knee-jerk "Stage IV Cancer-no way bypass surgery." He talked with us and Larry's oncologist, saw what Larry's life is like, and did a quadruple bypass on Jan 20. Larry passed all the post surgery tests with flying colors and we came home Jan 27.

He will be starting cardiac rehab and seeing the oncologist to re-start chemo in several weeks.

We feel very blessed and grateful for physicians who also "get it" that everyone is a statistic of one and pray for many more good days.

Angie---Diagnosed with triple negative Breast Cancer 12/27/11 after routine mammogram; undergoing chemo

Wife of Larry--Diagnosed Stage IV EC June 21, 2011; Quadruple Bypass Surgery 1/20/12

Comments

  • ritawaite13
    ritawaite13 Member Posts: 236
    #2
    Absolutely right
    Hi Angie,
    You are right on with your "one size does NOT fit all" when it comes to Stage IV EC. I'm very happy for you that the two of you are still able to keep plugging away and have some quality time together, despite the obstacles you've both faced. Unfortunately, my husband was not quite that lucky and passed away after just 15 weeks this past October.
    You two just keep doing whatever it is you're doing...it's obviously good medicine.
    Rita
  • Callaloo
    Callaloo Member Posts: 135
    #3
    You are so right
    And lucky to have a team of doctors who recognize that even stage IV, while not curable, is treatable, much like a chronic illness.

    I am now being treated for my second recurrene with taxotere. The side effects are tolerable. I'm not able to go into to office every day like I did on the Xeloda, but I generally feel better. I have no doubt that whatever we find on the next CT scan, I will celebrate my 2-year anniversary on Mar. 12.

    In the past 22 months since my diagnosis of stage 4 EC, I have vacationed in the Caribbean and Mexico, and I am planning another tropical trip in the next few months, as soon as the chemo is done.

    I no longer burden each treatment option with the hope of a cure. I just take it as buying some more time. It takes all the anxiety out of waiting for those CT scan results. I take them in stride now. Just like I take the rest of my life. Live each day.

    Lu in Oregon, Stage IV EC, diagnosed Mar. 12, 2010.
  • Callaloo
    Callaloo Member Posts: 135
    #4
    Callaloo said:

    You are so right
    And lucky to have a team of doctors who recognize that even stage IV, while not curable, is treatable, much like a chronic illness.

    I am now being treated for my second recurrene with taxotere. The side effects are tolerable. I'm not able to go into to office every day like I did on the Xeloda, but I generally feel better. I have no doubt that whatever we find on the next CT scan, I will celebrate my 2-year anniversary on Mar. 12.

    In the past 22 months since my diagnosis of stage 4 EC, I have vacationed in the Caribbean and Mexico, and I am planning another tropical trip in the next few months, as soon as the chemo is done.

    I no longer burden each treatment option with the hope of a cure. I just take it as buying some more time. It takes all the anxiety out of waiting for those CT scan results. I take them in stride now. Just like I take the rest of my life. Live each day.

    Lu in Oregon, Stage IV EC, diagnosed Mar. 12, 2010.

    False advertising
    I just realized I no longer look anything like my picture as I've lost all my hair. But I'm too shy to post an update. Just take my word for it that I look kinda like the last emperor of China, according to my husband!

    Lu
  • fredswilma
    fredswilma Member Posts: 185
    #5
    Callaloo said:

    False advertising
    I just realized I no longer look anything like my picture as I've lost all my hair. But I'm too shy to post an update. Just take my word for it that I look kinda like the last emperor of China, according to my husband!

    Lu

    Lu
    You might not look alot like your picture, I am sure you are still super gorgeous, keep going your attitude is amazing.
    Ann
  • ritawaite13
    ritawaite13 Member Posts: 236
    #6
    Callaloo said:

    You are so right
    And lucky to have a team of doctors who recognize that even stage IV, while not curable, is treatable, much like a chronic illness.

    I am now being treated for my second recurrene with taxotere. The side effects are tolerable. I'm not able to go into to office every day like I did on the Xeloda, but I generally feel better. I have no doubt that whatever we find on the next CT scan, I will celebrate my 2-year anniversary on Mar. 12.

    In the past 22 months since my diagnosis of stage 4 EC, I have vacationed in the Caribbean and Mexico, and I am planning another tropical trip in the next few months, as soon as the chemo is done.

    I no longer burden each treatment option with the hope of a cure. I just take it as buying some more time. It takes all the anxiety out of waiting for those CT scan results. I take them in stride now. Just like I take the rest of my life. Live each day.

    Lu in Oregon, Stage IV EC, diagnosed Mar. 12, 2010.

    Hi Lu
    It's nice to see you back on board here. Good for you!!! You're doing so well that it's amazing. Just keep taking those wonderful trips and relishing all those memories. We all love it when we hear stories like yours, Lu. It gives hope to the newbies and feels kind of like a revenge on this beastly cancer that has not been as kind to many great people.
    Hugs to you,
    Rita
    PS: Look on the bright side, you never have to worry about having a bad hair day!
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #7
    Thinking of You and Sending Hugs
    Hi Angie and Larry
    Thank you for your recent updates. Glad to hear you had great drs. who "got it" and were quick to act. Hoping you are both doing well at this time, and take care of yourselves. The road to recovery from bypass surgery is long, but well worth it! Both my parents had bypass surgery and did very well with recovering. Take it slow...slow and easy win the race! Keep fighting that beast called cancer. Keep in touch.
    Tina in Va
    p.s can you explain what triple negative BC is? Negative in my mind means...not cancerous?
  • AngieD
    AngieD Member Posts: 493
    #8
    fredswilma said:

    Lu
    You might not look alot like your picture, I am sure you are still super gorgeous, keep going your attitude is amazing.
    Ann

    Lu,
    I don't look like my
    Lu,
    I don't look like my picture any more either. My hair left after my 2nd treatment of Adriamycin and Cytoxan last week.
    I love your attitude!
    Angie
  • AngieD
    AngieD Member Posts: 493
    #9
    Tina Blondek said:

    Thinking of You and Sending Hugs
    Hi Angie and Larry
    Thank you for your recent updates. Glad to hear you had great drs. who "got it" and were quick to act. Hoping you are both doing well at this time, and take care of yourselves. The road to recovery from bypass surgery is long, but well worth it! Both my parents had bypass surgery and did very well with recovering. Take it slow...slow and easy win the race! Keep fighting that beast called cancer. Keep in touch.
    Tina in Va
    p.s can you explain what triple negative BC is? Negative in my mind means...not cancerous?

    Tina,triple negative BC does
    Tina,triple negative BC does not mean not cancerous, but that it is Estrogen Receptor negative, Progesterone Receptor negative, and HER 2 negative. It's actually a more aggressive form than when those are positive, and the drugs used when the receptors are positive don't work (like Tamoxifen) After learning the EC lingo, I'm getting another crash course in BC. The plan for me is 8 weeks of Adriamycin and Cytoxan every other week (have had 2 so far), 12 weeks of weekly taxol, 3 weeks rest, surgery, 6 weeks of daily radiation. One step at a time--Larry and I plan to schedule our chemos at the same time, so we'll have other days free for our "real life." The good news is that my tumor shrunk some after the 1st round!
    Thanks for the hugs and good wishes!
    Angie
  • Proactive Daughter
    Proactive Daughter Member Posts: 55
    #10
    Hi Angie,

    Thanks for your post. I have always believed that. It was so shocking when the surgeon gave my dad a year. All I thought to myself was 'Is that the statistic?'. I wish he hadn't said that, but he did...and now that is all we think about...is that the clock is ticking. Cancer is not a 'One size fits all', everyone reacts differently to treatment, some try things that others don't. Some don't fight at all and do well.

    Thanks for the reminder, it's a great way to keep positive :)


    Jennifer
  • Ginny_B
    Ginny_B Member Posts: 532
    #11
    Callaloo said:

    False advertising
    I just realized I no longer look anything like my picture as I've lost all my hair. But I'm too shy to post an update. Just take my word for it that I look kinda like the last emperor of China, according to my husband!

    Lu

    Lu,your photo is sooooooo
    Lu,your photo is sooooooo pretty!
  • lindadanis
    lindadanis Member Posts: 235
    #12
    Proactive Daughter said:

    Hi Angie,

    Thanks for your post. I have always believed that. It was so shocking when the surgeon gave my dad a year. All I thought to myself was 'Is that the statistic?'. I wish he hadn't said that, but he did...and now that is all we think about...is that the clock is ticking. Cancer is not a 'One size fits all', everyone reacts differently to treatment, some try things that others don't. Some don't fight at all and do well.

    Thanks for the reminder, it's a great way to keep positive :)


    Jennifer

    I totally agree
    I totally agree that "one size don't fit all in regards to all cancer. I hope I did not offend anyone by my post earlier this week because this was not my intentions. However, I did want to point out that some doctors are not upfront with their patients, as Ed's doctor wasn't, about his prognosis and treatment plans. Many of you are new and do not remember me or my story and that is ok, I just wanted to say to everyone, please ask your doctor everything right from the start and ask them to be honest all the time because false hope is a horrible thing not only to the patient but to the family also. We, like many of you, never gave up hope, never wanted to say the end of coming, we went through all the chemo sessions and radiation hoping that it would cure Eddie, of course, I guess, deep in our heart, we knew this was not happening and we just didn't want to admit it, and I think that Ed's doctor kept us believing this too.

    I wish everyone on this site the best of health and keep a positive attitude and never stop praying.

    Linda

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