Hi All-

valeriec
valeriec Member Posts: 348 Member
edited March 2014 in Colorectal Cancer #1
Well, we are back from Boulder, and my mom finished 8 of 10 radiation treatments. By the 8th one, my mom was having pain higher up by her kidney. We know that she has a tumor there, but they can not treat it with radiation. It would be best they say to start the chemo-CPT 11 and erbitux. My mom is still not willing to do this, so we left Boulder early and headed home. Hospice has now been called in and my mom is on oxycodone 120 mg 3 times a day. We are also using liquid oxycodone to help with break through pain. Some days are good, and some days are bad. I do respect her decision to not do the chemo and I really do want to be supportive, but sometimes I wish she would just try this third line chemo. My mom's major organs are still clean, but she does have several lymph nodes that are lighting up. But she refuses to do the chemo. Basically her tumors are from neck to pelvic area. She is in so muchg pain. Sorry, I know I am rambling, but it has been a really long summer. I was home with my kids for only 2 days and now I am at my parents house again. Living in Boulder for 3 weeks was sort of fun, but not really.
God bless-
ValerieC

Comments

  • usakat
    usakat Member Posts: 610 Member
    #2
    Hi Valerie,

    I was just thinking of you and your mom yesterday. You, your mom and your family are always in my thoughts. I'm glad you checked in, but sorry to hear your tough news.

    My mom said at one point that she didn't want to do another round of chemo...I harkened back to my childhood days and threw a tantrum. Mom caved, toughed it out and is now doing very well. I hope your mom decides to go for it too. If not, it's understandable. I'm sure living with such pain is daunting....for all of you.

    Know that you are in my thoughts and prayers always. Stay in touch and let us know how your mom is...and how you are.

    Warm hugs,
    Katie
  • jams67
    jams67 Member Posts: 925 Member
    #3
    The stress of being with someone who is in pain is incredable, especially when they are loved ones. I will pray for your mom and for you.
    Jo Ann
  • valeriec
    valeriec Member Posts: 348 Member
    #4
    usakat said:

    Hi Valerie,

    I was just thinking of you and your mom yesterday. You, your mom and your family are always in my thoughts. I'm glad you checked in, but sorry to hear your tough news.

    My mom said at one point that she didn't want to do another round of chemo...I harkened back to my childhood days and threw a tantrum. Mom caved, toughed it out and is now doing very well. I hope your mom decides to go for it too. If not, it's understandable. I'm sure living with such pain is daunting....for all of you.

    Know that you are in my thoughts and prayers always. Stay in touch and let us know how your mom is...and how you are.

    Warm hugs,
    Katie

    Hi Katie-
    Believe me, I have been seriously thinking about a tantrum. I just wish that she would try because I still believe with all my heart that she could beat this cancer. The problem is...my mom does not believe that anymore. I am not sure that she ever believed it. I know she does not want to leave us, but she also lacks the will to fight. It is understandable, but still very hard.

    I am glad to hear things are well with your mom. I hope you and SB have settled into your new lives. My family is still living in the caretakers. We won't be in our new house until MAYBE???? October. Talk soon and thanks for the support.
    God bless,
    Valerie
  • valeriec
    valeriec Member Posts: 348 Member
    #5
    jams67 said:

    The stress of being with someone who is in pain is incredable, especially when they are loved ones. I will pray for your mom and for you.
    Jo Ann

    Thanks Jo Ann, we need lots of prayer right now.
  • kerry
    kerry Member Posts: 1,313 Member
    #6
    Valerie,

    I also lit up from my neck to my abdomen when I had a PET scan. My lymph nodes that were involved were in my neck, around my thyroid, all the way down my breast bone, around my aorta and throughout my abdomen. That was my recurrance! I decided right then to fight it...I went through a regimen of chemo for a year and then radiation and then more chemo and 3 years later and a 3 month period of NED, I'm still here. I also had a spot on my liver, which is now gone.

    My point, if your Mom's major organs are still clean, she can fight this disease. At this point the doctors treat it as a chronic disease and they can extend life for several years. Some days are tougher than others, but life is good, no matter what.

    You and your family will be in my thoughts and prayers. It is your mothers choice and if she chooses not to fight and does not have the positive attitude that is almost half the battle, there is little you can do but support her decision.

    No one understands how cancer hurts, unless you've been there. Unfortunately, caregivers never really understand.

    my very best to you and your family,

    Kerry
  • Sam725
    Sam725 Member Posts: 87 Member
    #7
    Valerie,
    I too am a caregiver and can't imagine having to sit back and let my husband give up, but I guess as Kerry says it is their choice even if we think it is a bad one. Please know you and your family are in my prayers and hoping that your mom finds the strenght and determination to fight back.

    God Bless
    Sandy
  • valeriec
    valeriec Member Posts: 348 Member
    #8
    kerry said:

    Valerie,

    I also lit up from my neck to my abdomen when I had a PET scan. My lymph nodes that were involved were in my neck, around my thyroid, all the way down my breast bone, around my aorta and throughout my abdomen. That was my recurrance! I decided right then to fight it...I went through a regimen of chemo for a year and then radiation and then more chemo and 3 years later and a 3 month period of NED, I'm still here. I also had a spot on my liver, which is now gone.

    My point, if your Mom's major organs are still clean, she can fight this disease. At this point the doctors treat it as a chronic disease and they can extend life for several years. Some days are tougher than others, but life is good, no matter what.

    You and your family will be in my thoughts and prayers. It is your mothers choice and if she chooses not to fight and does not have the positive attitude that is almost half the battle, there is little you can do but support her decision.

    No one understands how cancer hurts, unless you've been there. Unfortunately, caregivers never really understand.

    my very best to you and your family,

    Kerry

    Hi Kerry,
    I always enjoy hearing from you, and I do agree with what you say. I know that I could never understand what my mom is going through, but I do know that I love her and I will support any decision that she makes. That being said, it still does not make this any easier. And I know it is hardest on her and my dad.
    God bless-
    ValerieC
  • alta29
    alta29 Member Posts: 435 Member
    #9
    Maybe, just maybe if she reads Kerry's note....it's very inspirational....Tell her to believe....
    God bless
  • jerseysue
    jerseysue Member Posts: 624 Member
    #10
    Throw the tantrum what can it hurt. Good Luck.
  • betina61
    betina61 Member Posts: 642 Member
    #11
    Hi Valerie,so sad to see what you and your family are going through,I hope too that something happens that will make your Mom change her mind and go ahead with the chemo,I do believe for what you are telling us,that she has a chance to make it, I will pray for that,you are very special Valerie,and I admire all the support that you have given to your Mom with so much love.Lots of hugs for all of you.
  • valeriec
    valeriec Member Posts: 348 Member
    #12
    betina61 said:

    Hi Valerie,so sad to see what you and your family are going through,I hope too that something happens that will make your Mom change her mind and go ahead with the chemo,I do believe for what you are telling us,that she has a chance to make it, I will pray for that,you are very special Valerie,and I admire all the support that you have given to your Mom with so much love.Lots of hugs for all of you.

    You guys are all so great. I do not know what I would do with out you!!
    Last night I thought about showing my mom Kerry's post because it was so inspirational. I am going to talk to my dad today and see what he thinks.
    I have shortened my prayer to "Thy will be done." I know God will take care of us, and if my mom is supposed to do the chemo, she will.
    Again, you guys ROCK!
    God bless-
    ValerieC
  • dash4
    dash4 Member Posts: 303 Member
    #13
    Hi Valerie,
    I believe my husband's story may give your mom hope. The short version is: Severe pain increasing daily started 8/04-could not lay down-slept in chair...finally diagnosed Stage IV colon cancer 10/04, one month 5FU avastin, leucovorin. irinotecan, colon resection-liver resection and liver ablation, then 6 more months of chemo. The pain had stopped during chemo-started 2 weeks after stopping chemo in 7/05. Found reoccurence of cancer 11/05 in abdomen and chest...started CPT-11 and erbitux 11/05 every week......and still going. The amazing part which John's oncologist is amazed by is that John's pain is manageable when he is on chemo. For different reasons he has had some breaks from chemo and his pain goes out of control. John had emergency surgery in 2/07 for a blockage....he had been on 60 mg oxy 3x a day with breakthrough meds very rarely. Once off chemo he went up to 120 mg 3x day and up to 250 mg in breakthrough and still not comfortable. He went back on chemo and is now down to 80 mg 3x a day and back to his old self. I will gladly answer any questions for you, but just maybe your mom's pain could also be helped with the chemo.....and if she decides to start it-I will let you know how they have controlled JOhn's rash too. Good luck!! You are in my prayers!!I know you posted this yesterday-hope you read this.
    Dash
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #14
    My heart goes out to you and your mom. I hope she changes her mind , but I respect her decision also and I know how stressful it must be for you. Your both in my prayers . God Bless
    Diane

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