Discussion Board Forums Introductions! My Mum Mags

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  • #86914
    kevinj
    Member

    Dear All,

    FOUNDATION ONE TESTING

    Following a wild run around this week in making contact with Mum’s histopathologists/hospital/oncologist, I am pleased to confirm that it looks as though we have a sample that will be good for Foundation One testing.

    I think the Fedex guy collecting the packet/sample from me this morning in London thought I was some looney….I can’t remember having shipped something with so much value to me…and it seemed quite odd that it was a bit human tissue belonging to my Mum with tumour present!! :-)

    Anyway…the sample is now on its way across the Big Pond ..to Foundation Medicine in Cambridge MA.

    So my question now is what will I do with the Foundation One test results when they came through PLEASE ?

    What results should I be looking for from this Foundation One test? Are some results better than others? What happens if approved medication/trials are recommended. What does one do next?

    Please remember that this is London, UK . Oncologists may not (will not) be used to looking at the results from a Foundation One test. How can I help them? who should I consult? Is someone who specialisese in tumour genotyping, for example, needed to interpret the Foundation One test? perhaps rather than an oncologist?

    Any further guidance from the Community on how I should prepare now for getting the results (so that i understand them) in ten days time would be very gratefully received indeed.

    Thank you

    Best wishes

    Kevin

    #86913
    kevinj
    Member

    Thanks Duke. We are going to try to get the slides/material prepared (taken) from Mum’s previous hip bone biopsy in the first instance…and we will send them off to Foundation Medicine to see whether they can work with them. If not, Mum will then have to decide what she wants to do. I am now in direct contact with Foundation Medicine. They are very helpful.

    There are two interesting points (perhaps scientific) that arise from this: i) that mets in the bone as a secondary so similarly replicates the primary being suspected CC, and ii) whilst Foundation have said that they would prefer a more recent sample from the liver directly, they are willing to consider some bone tumour mets from a biopsy of just over a year ago. I can only assume that this means that a mutation does not change in relation to where it is located in the body and also that the mutation does not alter so significantly within a year (Mum’s hip biopsy was taken one year ago) to make it such that it is not worth testing.

    Best wishes

    Kevin

    #86912
    dukenukem
    Member

    My leftover liver biopsy material from my initial diagnosis was used by the Mayo Clinic for their studies. I had to have a lymph node removed. But, since I had already met my max deductible for the year, there was no cost to me.

    Duke

    #86911
    kevinj
    Member

    Dear Catherine and Marion,

    Those links are REALLY helpful Thank you :-)

    I will let you know how we get on in making progress with this.

    Foundation One have already informed me that they would prefer a more up to date biopsy than some tissue from last February 2014’s biopsy…but they will accept the old sample…if we want to do it that way. I will chat this through with Mum’s onc.

    Thanks again

    Best wishes

    Kevin

    #86910
    marions
    Moderator

    This may be of interest:
    http://www.genome.gov/27556716

    #86909
    middlesister1
    Moderator

    Dear Kevin.

    Although newer, one thing we will ask about is genetic testing through a blood test. The oncologist said that there is always some of the tumor from a biopsy frozen and saved, so we may be able to use that from last year, but if not may look at the blood testing route. There were some here on the board that used that method, and when I contacted a US company, they were very responsive and were willing to work with us to make sure insurance covered the whole cost. Since we went for the SIRT, still haven’t had it completed the testing, but hope to bring it up at our next appointment.

    I’m assuming it’s less costly than a biopsy, so if available in the UK, may ask about it as well. You can search on Guardant on the boards.

    https://www.guardanthealth.com/

    It would be great to know if any doctors discussed benefits of having a biopsy rather than blood test.

    Best of luck,

    Catherine

    #86908
    kevinj
    Member

    Dear Duke and Gavin,

    Thank you for that very helpful advice.

    Duke-your own example of the reason for having a genomic test and the outcome/product ie a clinical trial… makes it very much worth doing for Mum (as it might offer some hope for greater longevity). I shall now insist on it taking place.

    Presumably all I need the onc (or someone else-perhaps an interventional readiologist?) to do on this is instruct a biopsy for a specimen for the Foundation One testing. Do they need to go into the liver for this sample or can they take it perhaps from an easier location where there is bone mets?

    Gavin-thank you. yes—I have found the AMMF website. I agree. It is a very useful resource area for those of us in the UK.

    Thanks again for the supportive and encouraging advice.

    Best wishes

    Kevin

    Kevin

    #86907
    gavin
    Moderator

    Thanks for that Kevin. I forgot to post this link in case you have not heard of AMMF here in the UK. This is the UK’s only CC charity and you will find a ton of specific UK related info on that site. It is run by Helen who is a star and is loads of info on it should you wish to seek further opinions and possible treatment options for your mum.

    http://www.ammf.org.uk/

    And want to say that I so agree with Duke, push, push and keep on pushing for everything. Remember as well that we are here for you also.

    My best wishes to you and your mum,

    Gavin

    #86906
    dukenukem
    Member

    Push as hard as you can. There are numerous examples here of going to a second, third, fourth onc before getting a good answer. Blunt fact: your mother’s life is at stake here. What would she do for you?

    I’ve run into the “able and willing” issue here. Some oncs stop at conventional treatment. Others, generally those with greater experience, have the knowledge when to push for non-conventional treatments and have the status with insurance companies to get it approved for payment.

    I was stamped “palliative care” right from the start. Only when I pushed did I get genomic testing. That’s what is leading to a clinical trial when my FOLFOX6 no longer works.

    Duke

    #86905
    kevinj
    Member

    Wow Catherine-so pleased to hear that for your Mum. :-)

    Your message contains very helpful information.

    You hit the point on the head with perhaps your reference to an “adherence to the “Gem/CIS” protocol”

    I am happy for GEM/CIS to continue to be part of Mum’s treatment programme…which seems to be keeping things stable in the liver (perhaps it is working much better with the mets)…and which she seems able to easily tolerate.

    What I am keen not to miss out on whilst we go down the Gem/Cis path is considering other more novel treatment options/trials.

    Perhaps a strategy is to stay with GEM/CIS whilst it seems to be working/doing a decent job…but we use this time whilst Mum is pretty fine/well (her liver function/blood test has/have been normal throughout this…even following SIRT) to look for treatment options that we might consider later…that is why the genomic testing etc is currently on my mind.

    Anyway best wishes to you and your Mom

    Kevin

    #86904
    kevinj
    Member

    Hi Gavin,

    Thank you for those kind words.

    I agree with your understanding on the limited availability of public funded SIRT treatment in the UK . Whilst NHS England have now approved a number of SIRT delivery centres, there is a criteria that has to be satisfied before one is eligible for treatment. Mum would NOT have been eligible for NHS treatment because of mets/Stage iV .

    On diagnosis, this is another odd one. I am not sure we have really ever yet had a definitive diagnosis of CC. What we have had is statements from a variety of consultants: oncologist/liver surgeon/liver specialist radiologists saying that all the evidence/imaging/pathology points to suspected CC.

    Mum’s main care is with UCH London (and I suppose they diagnosed her) but we had the SIRT done at Hammersmith Hospital, London…who seem to be the masters for it here. in London…but have not been approved as one of the UK delivery centres for the NHS. Kings College Hospital in London also deliver a lot of SIRT. Mum’s health insurance company very kindly agreed to pay for it all.

    It is quite interesting reading the SIRT postings on this website. I have only just recently read them. The posting do not make great reading (i thought) for SIRT as treatment option.!!

    Thank you for you thoughts and best wishes to you and your loved ones as well

    Kevin

    #86903
    middlesister1
    Moderator

    Hi Kevin,

    I had to be pushy in getting Mom a second SIRT treatment. We were dealing with her oncologist, who was very cautious, and I had to bypass her to have the Interventional Radiologist take another look at her case.

    Her oncologist was also at first against the genetic testing saying that what if results show that a drug not approved for CC would show as best treatment option and we couldn’t get access to it. However, she seemed to have come around and at our last meeting said (at least here in the US), there is no approved second line, so maybe she would be able to use the info results to decide what would be next. I believe she had not had many prior CC patients, and was just following the GEM/CIS protocol, but she did have my mother’s quality of life as top priority (chemo can be harsh).

    It can’t hurt to ask. And, second opinions also can be good. Right now Mom has no evidence of disease and we are a few months after the timeline they had given her. I realize how lucky we are, but it also did take a bit of pushing beyond what I typically would do.

    We are here for you,
    Catherine

    #86902
    gavin
    Moderator

    Hi Kevin,

    Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum, but glad that you have joined us here as you have come to the best place for support and help. It does not surprise me to hear you say that you had to struggle to get SIRT in the UK as it is has not long been approved by NICE as a treatment option for ICC. I know that there are not many hospitals in the UK that can even do this here. I am in Scotland and I understand that SIRT up here will be limited to a few hundred patients at most. Very frustrating to say the least!

    You are asking all of the right questions as to your mums treatment and please do not be afraid to ruffle any feathers! Keep asking these questions and as you say, it is no good asking when it is too late.

    I have a few questions. Can I ask where your mum was diagnosed in the UK and has she thought about seeking a further opinion on everything? Yes it is good to be pushy as you say as sometimes you will not get something without pushing for it. How does your mum feel about further possible treatments and looking to explore things further?

    Keep coming back here Kevin, we are here for you.

    My best wishes to you and your mum,

    Gavin

    #86901
    kevinj
    Member

    Thanks for the additional welcomes and the guidance on Foundation One Duke. Much appreciated:-) It is a great relief and support to be a part of this Community.

    Not wanting to pose a rather depressing question/thought near the outset of my joining (as most of the time I am an optimistic person…honestly) , but my impression from what I have heard from the onc’s here in the UK in relation to Mum is that she is Stage iV and that rather limits what they are able and willing to do in relation to treatment.

    Resection is out of the question… apparently because there are bone mets in other locations (but currently being controlled by chemo)…and perhaps because of Mum’s age. We had to struggle to get the SIRT…but I think that was because of the potential complications that can accompany a SIRT delivery. Perhaps a view that Mum should now just be palliated is the reason why we have not yet been offered genomic testing/other stuff?

    During this process I have tried to ask what I would want for myself if I was in Mum’s situation. Perhaps it is good to be pushy…within reason? Ruffle a few feathers?? In the pursuit of ensuring one does not miss out?? No good asking for something when it is too late??

    Anyway, this website and the information on it, at least permits me to be informed and I will hopefully take the right questions to the onc’s/others for consideration.

    Hope you all have a lovely weekend

    Best wishes

    Kevin

    #86900
    middlesister1
    Moderator

    Dear Kevin,

    As others have said, welcome to the site. I think for all, our goal is to live long with a good quality of life. Although CC may make that more challenging than we would like for our loved ones, with your support, I am sure your Mum will have the best possible balance. And, you are so correct in that others will learn from your postings. Over the past 16 months, the posts and support on this site have been invaluable to me.

    Thank you for sharing,
    Catherine

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