I made a decision

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camul
camul Member Posts: 2,537
in Breast Cancer #1

After almost 7 months of only palliative treatment, I got up Monday and made an appointment for a second opinion at the Cancer Center here. I was able to get an appointment with the doctor who has been heading up trials with the immune system. I am not sure anything will come of it. I realize that I have had massive doses of chemo in the last 3 years. I just have been here for 6 months being told that the only option, other than the radiation that I received, has been pain meds and coumaden. I am still hopeful that I qualify for something that may increase my quality of life as well as time. I feel like I am just here waiting... sometimes. It is hard to keep up Hope alive when I am told there is nothing more they can do. I am hoping that this being a full research hospital/center that maybe they have something at their disposal that my onco does not. I guess this is my way of feeling like I am doing everything. Right now my ribs and chest bones throb all the time, and anything that will help I am open to. I thinkk my boys are kindof worried that I will get my hopes up only to be knocked back down. Where in reality, I know this is a long shot but one that I feel I need to pursue. Wish me luck! Carol

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  • aisling8
    aisling8 Member Posts: 1,627 Member
    #2
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    As my grandson says,

    "Good idea." Truly. Clearly you've got your wits about you, you've got enough energy to make good decisions like this one, and why the heck not? Someone once told me the answer is always no unless you ask. You're already facing worst-case scenario. So why not look for improvement, help, anything?

    I can see why your boys would be worried about you receiving a negative response, but I think by now you know how to handle the things you have to handle. And this is sooo much better than sitting around doing nothing. I'd love to see your pain diminished. With less pain, everything seems better.

    Anyway, good for you. Keep us posted (of course, you will:)

    Big huge hugs, but light ones, like a feather,

    Victoria

  • lynn1950
    lynn1950 Member Posts: 2,570
    #3
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    Awe

    Carol, I am so in awe of you and your positive power!  May you find the care you need.  xoxoxox Lynn

     

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #4
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    I think this is a wonderful

    I think this is a wonderful idea and I am praying that you qualify.  Good luck Carol!  And big virtual (((hugs)))!

  • camul
    camul Member Posts: 2,537
    #5
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    CypressCynthia said:

    I think this is a wonderful

    I think this is a wonderful idea and I am praying that you qualify.  Good luck Carol!  And big virtual (((hugs)))!

    Thanks Victoria Lynn and CC.
    Like I said might be reaching for stars, but if one works.... I appreciate the support. I know not everyone here thinks it is such a good idea. I have heard that sometimes we have to accept our f yate, but if here is anything more out there, then maybe this isnt my fate yet, or at least in a week I should have more answers.

    Hogs
  • Josie21
    Josie21 Member Posts: 382 Member
    #6
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    Good Luck

    I think it's a great idea.   You never know what can happen and I wish you all the luck in the world.  You are an amazing person!!

    Hugs,

    Ginny

  • New Flower
    New Flower Member Posts: 4,294
    #7
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    Good luck

    Carol

    i hope they will offere something for you.

    Good luck please stay sstrong hugs 

  • fauxma
    fauxma Member Posts: 3,577 Member
    #8
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    New Flower said:

    Good luck

    Carol

    i hope they will offere something for you.

    Good luck please stay sstrong hugs 

    Carol,
    I think that this is a

    Carol,

    I think that this is a good idea.  You will be no worse off if nothing comes of it but who knows what might be available for you.  You have been very realistic throughout all of your treatments and diagnoses and you will be about this.  You are the master of your fate and only you can make these decisions.  I hope that they have something that you can try.  My prayers are with you. 

    Stef

  • sbmly53
    sbmly53 Member Posts: 1,522
    #9
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    Carol,

    I hope for the best for you!

     

    Sue

  • eihtak
    eihtak Member Posts: 1,473 Member
    #10
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    camul....

    As my young grandson often says, " you won't know unless you try"...... a statement his mother used to teach him to try new foods but he now repeats in other circumstances. I recently did a paper on faith and hope, you inspire both in me and I will pray you are well rewarded.

  • camul
    camul Member Posts: 2,537
    #11
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    eihtak said:

    camul....

    As my young grandson often says, " you won't know unless you try"...... a statement his mother used to teach him to try new foods but he now repeats in other circumstances. I recently did a paper on faith and hope, you inspire both in me and I will pray you are well rewarded.

    Thanks.
    Sometimes I think that I go into freeze mode for a while whrn I am afraid of the outcome. This is such a hard disease. What one doctor hasnat their disposal is so different than the one in the building next door, all because of alliances with university med centers or research centers, and here United Healthcare does not cover the U or big cancer center. Now that I am Medicare, they will cover as my primary. Utah is also one of 15 states that does not require insurance companies to cover trials as an accepted form of treatment for illnesses.
    If I would have changed to Select Health thru work, they only cover in Utah and Idaho, so if I was out of state, I only could have gotten coverage at a hospital if it was an emergency, and that would have been at 60%.
    So insurance companies really do dictate our medi al options in so many instances.
    Now I will just pray even harder, so far it has brought me this far...
  • SIROD
    SIROD Member Posts: 2,194 Member
    #12
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    Best Wishes

    Good luck Carol, I hope they find something for you.  That old cliche "nothing ventured, nothing gain".

     

    How about lidocaine patches for your ribs.  That is what I use.

    Sending all good wishes that the oncologist you will see has something for you.

    Best,

    Doris

  • 1surfermom
    1surfermom Member Posts: 396 Member
    #13
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    decision

    Carol,

    I think that you made a very good decision. I understand that your boys would be concerned, they love you and do not want to see you dissappointed. I too, am in awe of your strength and resolve. I will keep you in my thoughts and pray that you will qualify for the trial. Love Surf

  • SAvent
    SAvent Member Posts: 62
    #14
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    wow

    You are such a fighter!

     

    God Bless & Good Luck!!

  • hope67
    hope67 Member Posts: 181
    #15
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    Good luck, dear Carol!

    It's nothing wrong with that you try what you can. At least you will be able to say that you did all you could.

    Good luck and big hugs, Carmen

  • mopar
    mopar Member Posts: 1,972 Member
    #16
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    I AGREE WITH EVERYONE, CAROL

    Second opinions are a good thing.  You never know till you try, right?  Sending good thoughts and prayers to you for a positive second opinion.

    (((HUGS)))
    Monika

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #17
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    mopar said:

    I AGREE WITH EVERYONE, CAROL

    Second opinions are a good thing.  You never know till you try, right?  Sending good thoughts and prayers to you for a positive second opinion.

    (((HUGS)))
    Monika

     

    You gotta do, what you gotta do

    Smooth waters,  delicated professionals and options is what I hope and pray for you, Carol.

    Positive thoughts, and magic sprinkles coming your way.

    Vicki Sam

  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #18
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    Reach for the Stars.

    I've been following your posts and answereing them.I would do anything if it meant I had more time.The more time we're given the better chance we can beat this beast.Wishing you Luck.

    I understand your sons but WHAT  IF you didn't take chances. You would always wonder.

    Thoughts and Prayers

    Lynn Smith

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #19
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    Lynn Smith said:

    Reach for the Stars.

    I've been following your posts and answereing them.I would do anything if it meant I had more time.The more time we're given the better chance we can beat this beast.Wishing you Luck.

    I understand your sons but WHAT  IF you didn't take chances. You would always wonder.

    Thoughts and Prayers

    Lynn Smith

    Yes!

    I agree with everyone else, you don't know unless you ask.  I'm surprised about your health insurance not being accepted by university teaching hospitals.  Usually they accept all plans because they have a commitment to the community.  Do you think if you changed primary care docs and were "in network" it would make a difference?  Sometimes community practices because they have to treat all cancers can't possibly be as experienced and have the ultimate expertise in a specific cancer. 

    You have been a wonder for so long, Carol.  I believe you have clearly demonstrated that your situation is unique because of how long you have been fighting these mets.  That alone warrants the opinion of someone fully versed in all things breast cancer, specifically the kind you have.  Doesn't mean they have a magic bullet, but you never know unless you explore all options.  My neighbor was dx'd with pancreatic cancer 3 years ago which sends shivers down everyone's spine.  He was with a very good medical group who recommended radiation.  He didn't like that option, so he went to UC San Francisco to a pancreatic cancer expert who recommended that he not have radiation, but have some special chemo cocktail.  All we know is he is still in remission . . . an example of someone knowing and being able to offer something beyond the standard of care and being able to hone in on his specific situation.

    I will continue to send all my hopes and prayers your way. 

    Best,

    Suzanne

  • ladyg
    ladyg Member Posts: 1,577
    #20
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    Carol

    I hope you are able to get the help you deserve from this new source. You are strong and know what you want so just "go for it"!

    Hugs,

    Georgia

  • KathiM
    KathiM Member Posts: 8,028 Member
    #21
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    Carol, checking in is a grand idea!

    Cancer treatment changes so rapidly, I wholeheartedly support your decision to do more research!

    There is much promising news from the area of immune system research....I have, for the first time since hearing those 3 words, have hope for the future!

     

    I was blessed with a wierd (at the time, growing up) immune system that was very strong.  In my life, I hardly ever got 'really sick', and shrugged off colds and flu easily and quickly.  I also healed quickly.  This was a family trait.  So, interestingly enough, was cancer.  As my sister puts is "Our family hardly ever gets sick, but when we do, we get life-threatening illnesses (she, too, has successfully battled her second primary cancer, just like me and our mom), but then recover."  

    Last time I checked, there are at least 2 main research arms in the use of immune systems:  One is to load chemotherapy into a special cell that is designed to 'wake up' the system, and head straight for the cancer.  The other is the finding of one amino acid that, for some reason, masks the presence of cancer from the body's immune system.  Once this acid is turned 'off', the body sees the cancer, and vigorously attacks it!!!

    I firmly believe that our immune systems are the key, and I hope you find some help in your battle through yours!

    Big hugs!  Kathi

     

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