My Mum Mags

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  • February 19, 2015 at 2:53 pm #86899
    lainy
    Spectator

    Dear Kevin, welcome to the best place to be for CC support. SO sorry to hear about your Mum but we DO love the word stable! She is very lucky to have a son like you and with such a wonderful attitude. I also want to compliment you on your advocacy as a Caregiver as doing the research is so important. We have a Search engine at the top of the page and if you click on that, add a word or two and past posts will appear about that subject. Sending you best wishes and best of luck. Please keep us advised on Mum’s progress as we truly care.

    February 19, 2015 at 2:28 pm #86898
    dukenukem
    Member

    No sure what FoundationOne charges over there, but they charged me $5800.00 which was paid by insurance.

    Duke

    February 19, 2015 at 11:16 am #86897
    kevinj
    Member

    Thanks for such a warm welcome :-)

    My thoughts at the moment in relation to possible future treatments options (which I suppose is a potted summary of posting on this site/my research):

    1. The clinical trial on LY2801653 : https://clinicaltrials.gov/ct2/show/NCT01285037, http://www.ncbi.nlm.nih.gov/pubmed/23275061 looks very promising.

    2. Immunotherapy-any recommendations at this stage? Merck’s Keytruda
    drug looks potentially promising…but very expensive.

    3. I am also intrigued that we seem slightly out of date in the UK in relation to genome tumour testing (the testing still being considered to be quite novel/pioneering here ). I am happy to pay for a Foundation One test provided the results are useful in helping to get us to the right trial? Should I get (perhaps insist if necessary of the onc) that we get a tumour genome test now on the basis that it may be helpful in informing our treatment options later? I am happy to pay for it provided it will be useful/worthwhile?

    Any thoughts on the above would be very gratefully received.

    Medicine in the USA (on this particular subject matter at least) and evident from the posting on this site seems to be slightly more proactive in its approach than medicine delivery in the UK. Mum has private medical insurance so I am not sure why our expectations might or should be lower/less.

    Best wishes
    Kevin

    February 19, 2015 at 8:31 am #86896
    dukenukem
    Member

    As a patient, your goal is everything I would hope for from my caregivers. Well said.

    Duke

    February 19, 2015 at 6:34 am #86895
    marions
    Moderator

    Kevin….I would like to echo Darla and welcome you to our site and also congratulate your Mom on “stable” disease and for having raised such a fine son. I am touched by your comment:
    “My current goal is to keep my Mum alive for as long as possible…provided that she maintains her dignity and quality of life in the process”
    You are a wonderful advocate for your Mom. As Darla mentioned please continue to engage with us – we are in this together and we care.

    Hugs,
    Marion

    February 18, 2015 at 10:00 pm #86894
    darla
    Spectator

    Hi Kevin,

    So glad you have joined us but sorry for the situation with your mum that brought you here. Also happy to hear that for now she is stable. You have a very good attitude and your goal of being cautiously optimistic yet wanting to preserve your mom’s dignity and quality of life are commendable. Please do keep us updated as to how mum is doing. We are a very caring and supportive community as you already know from reading the posts. I am sure that your mum’s experiences will be helpful to others too. Wishing all the best for her.

    Darla

    February 18, 2015 at 8:46 pm #10967
    kevinj
    Member

    Dear All,

    Firstly, I wanted to thank you all for contributing to (and perhaps creating) such an amazingly helpful website.

    I have found it absolutely invaluable reading through all of the various posts in relation to CC. A very big thank you :-)

    My Mum was diagnosed with CC exactly one year ago today. She presented in very strange circumstances apparently. Her hip was giving her walking difficulty. A biopsy of the hip bone pointed to a probable diagnosis of CC. She had bone mets emanating from the liver.

    In short Mum’s story is that she is a 72 year old lady that has undergone 8 cycles of GEM/CIS chemo and has recently had a two part SIRT procedure. Her situation is currently pretty stable.

    My current goal is to keep my Mum alive for as long as possible…provided that she maintains her dignity and quality of life in the process.

    I will try to update on Mum’s condition as we go through this journey in the hope that others will be able to learn from our experiences…as I have learned from others previously posting on this website.

    Best wishes

    Kevin

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