Not the results we were hoping for

stephikindred
stephikindred Member Posts: 140
edited August 2012 in Esophageal Cancer #1
My 72 year-old mother was diagnosed with esophageal cancer on November 7th, 2011. After undergoing a multitude of tests, we learned she was Stage IV on January 31, 2012. She began chemotherapy in early February. She had 4 cycles(every other week) of Cisplatin, (5FU) and Leucovorin and then had another scan after the fourth cycle to see how she is responding to chemo. She had mild response to treatment. On 5th cycle changed from Cisplatin to Oxaliplatin. A day before the 5th cycle started, mom had a blood transfusion.

Last week mom had a PET scan and an MRI due to loss of balance. Brain looks ok but the disease has progressed so we did not get the results we were hoping for. The scan showed mets to the bone, stomach, liver and pelvis. New chemo started today is Docetaxel (taxotere). Her side effects from prior treatment include peripheral neuropathy, malaise, mouth sores. No more driving and difficulty walking and maintaining balance. She is losing motor function to her hands as well.

I was shocked to hear of so much spread. I am wondering if the chemo is worth it since the disease continues to spread. They wanted to put her on an additional chemo but I urged the oncologist to consider her quality of life and he said we will try this one only and see how she responds. This is so hard. Now I am second guessing not doing the additional chemo it when he told me about those side effects I just had to wonder when enough is enough.

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Your mother
    So sorry to hear about your mother. What does she want to do? This should be her decision and her's alone. Sometimes the chemo does more harm than good and can hasten the outcome. It comes down to quality of time left, not quantity. This is what my husband is saying as he deals with this horrific disease and something we have told our sons.

    Our neighbor's husband was faced with this decision and he decided to continue on with the chemo and he didn't have a good outcome at all. If I were you, I would sit down and talk with your mother about what she wants to do. Discuss all the good and all the bad with the chemo treatments and let her make the decision. Believe me, I know how hard it is.

    Remember everyone reacts differently to treatment.

    Sharon
  • Freida
    Freida Member Posts: 182
    #3
    So sorry Steph. It must be
    So sorry Steph. It must be very difficult to decide what to do about treatment at this stage, especially given that your Mom has ongoing severe side effects from past treatments. Does your Mom feel enough is enough? Once she feels it, then it is.

    I am so sorry you and Mom are going through this. Big cyber {{{hugs}}} to both of you.
  • Bermudagirl
    Bermudagirl Member Posts: 114
    #4
    Freida said:

    So sorry Steph. It must be
    So sorry Steph. It must be very difficult to decide what to do about treatment at this stage, especially given that your Mom has ongoing severe side effects from past treatments. Does your Mom feel enough is enough? Once she feels it, then it is.

    I am so sorry you and Mom are going through this. Big cyber {{{hugs}}} to both of you.

    Hoping the best for you
    and your mom, and that you are able to help her make the right decisions based on what's best for her.
  • stephikindred
    stephikindred Member Posts: 140
    #5
    Freida said:

    So sorry Steph. It must be
    So sorry Steph. It must be very difficult to decide what to do about treatment at this stage, especially given that your Mom has ongoing severe side effects from past treatments. Does your Mom feel enough is enough? Once she feels it, then it is.

    I am so sorry you and Mom are going through this. Big cyber {{{hugs}}} to both of you.

    Denial
    Thanks for your caring responses. I agree 100% that it's her choice and she should know the facts. That's the tricky part.

    My mom is in denial as a coping mechanism and she believes if she gives up on chemo she is giving up the fight. It is hard ro talk to her realistically because when I tell the truth it is not what she wants to hear. She thinks I am giving up hope. So I walk this fine line of how much truth to give her. She tells me she can't believe it is happening to her and just can't wrap her head around it. But as I see her deteriorate I can't help but speak my mind to the doctors. She would let them pump her full of those drugs as long as there is the faintest glimmer of hope for remission regardless of how crappy she feels. So I spoke up for her. I am the only one in the family who is able to take her to the doctors so my family expects me to do the right thing her behalf. I just wish she would let me be real with her and tell it to her like it is but knowing her she would not hear what I have to say. Better yet if the doctors would be real with her that might sink in and take some of the bad guy stress off me but they will always come back with another drug they can try. I'm just so mentally drained from all this.
  • paul61
    paul61 Member Posts: 1,392 Member
    #6
    So sorry
    I am so sorry to hear that the results from your Mom's tests were not what you had hoped for. It sounds like the side effects from treatment are really starting to impact her quality of life.

    As several others here have suggested, when it is time to discontinue treatment is really your Mom's decision, but I am sure she needs your support and council to help her make that decision.

    As a survivor I have considered how far I would go with treatment if I were to have a recurrence. I have a list of things that; if I lost the ability to do for myself, I would want to stop treatment. I think each of us has to evaluate that list ourselves and then decide. But once I decided I would hope that my family would respect my wishes and support me.

    This is a very difficult conversation to have with your Mom; but one that I would bet she would appreciate. She is probably having the conversation in her own head right now and would no doubt appreciate some input on potential outcomes of additional treatment.

    Best Regards,

    Paul Adams
    Grand Blanc, Michigan

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Unknown
    Unknown
    #7
    stephikindred said:

    Denial
    Thanks for your caring responses. I agree 100% that it's her choice and she should know the facts. That's the tricky part.

    My mom is in denial as a coping mechanism and she believes if she gives up on chemo she is giving up the fight. It is hard ro talk to her realistically because when I tell the truth it is not what she wants to hear. She thinks I am giving up hope. So I walk this fine line of how much truth to give her. She tells me she can't believe it is happening to her and just can't wrap her head around it. But as I see her deteriorate I can't help but speak my mind to the doctors. She would let them pump her full of those drugs as long as there is the faintest glimmer of hope for remission regardless of how crappy she feels. So I spoke up for her. I am the only one in the family who is able to take her to the doctors so my family expects me to do the right thing her behalf. I just wish she would let me be real with her and tell it to her like it is but knowing her she would not hear what I have to say. Better yet if the doctors would be real with her that might sink in and take some of the bad guy stress off me but they will always come back with another drug they can try. I'm just so mentally drained from all this.

    This comment has been removed by the Moderator
  • stephikindred
    stephikindred Member Posts: 140
    #8
    unknown said:

    This comment has been removed by the Moderator

    Thanks Sherri
    Before I left the cancer center today i had a talk with the nurse. I shared my frustrations and she told me to start by telling all this to the physicians assistant. He is a straight shooter and is not from the old school like mom's oncologist. I sent him an email and hopefully that will get the dialog started. My mom is so out of it sometimes I think she is detaching but this may also be a side affect of the chemo. It seems in the past month these changes are more pronounced.
  • AngieD
    AngieD Member Posts: 493
    #9
    paul61 said:

    So sorry
    I am so sorry to hear that the results from your Mom's tests were not what you had hoped for. It sounds like the side effects from treatment are really starting to impact her quality of life.

    As several others here have suggested, when it is time to discontinue treatment is really your Mom's decision, but I am sure she needs your support and council to help her make that decision.

    As a survivor I have considered how far I would go with treatment if I were to have a recurrence. I have a list of things that; if I lost the ability to do for myself, I would want to stop treatment. I think each of us has to evaluate that list ourselves and then decide. But once I decided I would hope that my family would respect my wishes and support me.

    This is a very difficult conversation to have with your Mom; but one that I would bet she would appreciate. She is probably having the conversation in her own head right now and would no doubt appreciate some input on potential outcomes of additional treatment.

    Best Regards,

    Paul Adams
    Grand Blanc, Michigan

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Oh, Steph, you are in such a
    Oh, Steph, you are in such a difficult position right now in addition to still being devastated with the scan report. I am so sorry. I think you have made a very wise decision to get the PA involved to help your mother understand the situation and choices,so she can make her decision. She is very fortunate to have you there with her. Praying for strength for you both.
    Angie

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