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Shades of Grey

MandaMoo
MandaMoo Member Posts: 500
edited September 2016 in Metastatic breast cancer

Now I haven't actually read shades of grey but I am sure my past week, while a feel a week in shades of grey was not as "riveting".

Once of the things that stands out to me since I began this journey on 22nd February 2011 is how grey everything in Breast Cancer is.  I expected medicine, science to be black and white.  You diagnose, you cut it out, your medicate and you are cured - that's what happens isn't it? The Dr knows all because the science backs it up.

How wrong I was.  I would be a wealthy women if I had a gold coin for everytime I have heard the answer "We don't know" , "The studies are not clear on that", "We don't have that information", "We don't understand why..."

This week I had a new experience in the shades of grey in dealing with my cancer.  I had progress scans - 12 weeks into trial - i have them every 6 weeks.  My first lot at 6 weeks showed stable disease (i.e. the cancer is pretty much the same - minimal growth, no new disease) - in fact one of my mediastinal lymph nodes had significantly reduced during the 6 weeks.  There is a process when you are on a trial - they identify target lesions.  Target lesions should meet RECIST criteria and be at least 1cm preferably 2cm in size.  Fortunately for me my lesions have always been small - the issue though for me is that I have "innumerable" lesions in my lungs - effectively so many nodules that they don't bother counting them.  So, they have 2 target lesions for the trial - both lung nodules.  (I have lung disease and some mediastinal nodes that have been inflamed).  So, the first report is done by a radiologist who has a quick 10 minute look and writes a short summary.  I had seen the films and thought they looked bad, left a message for my private oncologist - she returns my call at night saying it would appear I hae progression, the radiologist is saying that there is new disease and the nodule he reports on has grown 20-25%.  I then spend the next few days dealing with this news, working out next steps and go to my appointment with my trial oncologist who says he has looked at the films, the trial radiologist has done the measurements and within the trial criteria my disease is stable - the growth of the target nodules is around 15%.  He meticulously goes through the films with me, pointing out that the new scans are done on a new machine with higher resolution and he does not beieve the progression is significant.  He cannot find sign of new disease.  I had asked for a third opinion from the radiologist I trust the most, the one who knows my lungs back to front. He reports differently again commenting and measuring the 6 lesions that have changed the most - all within the vicinity of 20-25% but numerous are unchanged or marginal increase.  

So 3 radiologists, three differing opinions.  This information is what I need to make a decision.  If I decide to stop the drug I can never get it again.  Have I got full benefit of the drug yet?  Am I a sow responder?

 

My trial oncologist was honest - he would like to see some shrinkage by now and it seems I am slowly progressing.  Add increasing tumor marker numers that are unreliable and we have a mixed up story.  

So, shades of grey - I decided to stay on the trial - rescan in 4 weeks - wonder what we will see then - black, white, grey?

Amandax

Comments

  • pisces_tas
    pisces_tas Member Posts: 474
    edited March 2015

    Hi Amanda,

     4 weeks, means in the New Year !  Maybe you are a slow responder;  here's hoping. It would be hard to put these things out of your brain for long, I imagine.

     I was wondering, do you have any " pain " or " discomfort " in lung area ?

    I have not read Fifty Shades of Grey, and am not intending to read it, though I hear it has been popular. I have dreamed of writing, but I am not eloquent in words .

     My title was going to be " It's Funny Where You End Up. " My life is NOT over yet though. Everything changes over time. Nothing stays the same forever;  so to embrace change is what I am trying to do. To Not be afraid of the future, whatever it may be, and to live each day as best I can.

     "Today is Monday. " At this time of year the days seem to blur into each other. It can be hard to keep track.

    I am off to volunteer at our local Information Centre this afternoon.

    I wonder what 2013 will bring for me? Will I stay here or will I move? How will my children be? How will my life end up?  I am afraid I have not " planned " things very well. I guess I am a bit of a dreamer.

    I am hoping to go to the beach and swim in the sea at Bridport  over summer. Maybe I will visit friends too and enjoy the warmer days.

    I wish you and you closest, some good times over the next month Amanda.

    Warm wishes, Kathy.

  • pisces_tas
    pisces_tas Member Posts: 474
    edited March 2015

    Hi Amanda,

     4 weeks, means in the New Year !  Maybe you are a slow responder;  here's hoping. It would be hard to put these things out of your brain for long, I imagine.

     I was wondering, do you have any " pain " or " discomfort " in lung area ?

    I have not read Fifty Shades of Grey, and am not intending to read it, though I hear it has been popular. I have dreamed of writing, but I am not eloquent in words .

     My title was going to be " It's Funny Where You End Up. " My life is NOT over yet though. Everything changes over time. Nothing stays the same forever;  so to embrace change is what I am trying to do. To Not be afraid of the future, whatever it may be, and to live each day as best I can.

     "Today is Monday. " At this time of year the days seem to blur into each other. It can be hard to keep track.

    I am off to volunteer at our local Information Centre this afternoon.

    I wonder what 2013 will bring for me? Will I stay here or will I move? How will my children be? How will my life end up?  I am afraid I have not " planned " things very well. I guess I am a bit of a dreamer.

    I am hoping to go to the beach and swim in the sea at Bridport  over summer. Maybe I will visit friends too and enjoy the warmer days.

    I wish you and you closest, some good times over the next month Amanda.

    Warm wishes, Kathy.

  • pisces_tas
    pisces_tas Member Posts: 474
    edited March 2015

    Hi Amanda,

     4 weeks, means in the New Year !  Maybe you are a slow responder;  here's hoping. It would be hard to put these things out of your brain for long, I imagine.

     I was wondering, do you have any " pain " or " discomfort " in lung area ?

    I have not read Fifty Shades of Grey, and am not intending to read it, though I hear it has been popular. I have dreamed of writing, but I am not eloquent in words .

     My title was going to be " It's Funny Where You End Up. " My life is NOT over yet though. Everything changes over time. Nothing stays the same forever;  so to embrace change is what I am trying to do. To Not be afraid of the future, whatever it may be, and to live each day as best I can.

     "Today is Monday. " At this time of year the days seem to blur into each other. It can be hard to keep track.

    I am off to volunteer at our local Information Centre this afternoon.

    I wonder what 2013 will bring for me? Will I stay here or will I move? How will my children be? How will my life end up?  I am afraid I have not " planned " things very well. I guess I am a bit of a dreamer.

    I am hoping to go to the beach and swim in the sea at Bridport  over summer. Maybe I will visit friends too and enjoy the warmer days.

    I wish you and you closest, some good times over the next month Amanda.

    Warm wishes, Kathy.

  • Pamelamary
    Pamelamary Member Posts: 240
    edited March 2015

    Hi Amanda,

    How quickly we learn there are no certainties in the world of ABC women! However, perhaps we also realise how little certainty there is in life in general. We are being forced to adjust, learning to maintain hope when all our previous certainties have been swept away. But we do!

    I think you are doing the right thing, in giving the TDM1 every chance to work its "magic". At least you will be able to enjoy Christmas berfore the next step.

    Best wishes.... Pam

  • Pamelamary
    Pamelamary Member Posts: 240
    edited March 2015

    Hi Amanda,

    How quickly we learn there are no certainties in the world of ABC women! However, perhaps we also realise how little certainty there is in life in general. We are being forced to adjust, learning to maintain hope when all our previous certainties have been swept away. But we do!

    I think you are doing the right thing, in giving the TDM1 every chance to work its "magic". At least you will be able to enjoy Christmas berfore the next step.

    Best wishes.... Pam

  • TonyaM
    TonyaM Member Posts: 2,835
    edited March 2015

    How upsetting and frustrating for you.It's scary that our BIG decisions are dependant  on who is reading our pathology and scans.I think you are wise in getting a few opinions and then ultimately deciding for yourself. When it comes to that grey area,I guess you need a few consecutive scans to see which way it's going.I would see conflicting opinions,although annoying,and shades of grey = stable, right ? If the trial drug is tolerable then I think you've made the right decision.Amanda,your medical knowledge by now must almost be on par with the oncologists! Let's say you are  stable but I hope Christmas with your family is way better than grey.

                                love Tonya xx

  • TonyaM
    TonyaM Member Posts: 2,835
    edited March 2015

    How upsetting and frustrating for you.It's scary that our BIG decisions are dependant  on who is reading our pathology and scans.I think you are wise in getting a few opinions and then ultimately deciding for yourself. When it comes to that grey area,I guess you need a few consecutive scans to see which way it's going.I would see conflicting opinions,although annoying,and shades of grey = stable, right ? If the trial drug is tolerable then I think you've made the right decision.Amanda,your medical knowledge by now must almost be on par with the oncologists! Let's say you are  stable but I hope Christmas with your family is way better than grey.

                                love Tonya xx

  • Jennt28
    Jennt28 Member Posts: 124
    edited March 2015
    So this was only your second scan? It is possible that the mild 15% increase (trial doctor) is caused by "tumour flare" I suppose...

    However, if it is that you are slow responder the concern is that the cancer will move faster than your response which is not what you want.

    Are there many more options out there for you? I know that I have heard many stories of someone progressing on one drug and then having great response to a different one, including some of the simple hormonal treatments.


  • Jennt28
    Jennt28 Member Posts: 124
    edited March 2015
    So this was only your second scan? It is possible that the mild 15% increase (trial doctor) is caused by "tumour flare" I suppose...

    However, if it is that you are slow responder the concern is that the cancer will move faster than your response which is not what you want.

    Are there many more options out there for you? I know that I have heard many stories of someone progressing on one drug and then having great response to a different one, including some of the simple hormonal treatments.


  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015
    Jennt28 - I too am hoping it is some sort of inflammatory response to the drugs and maybe some tumor flare. I have only my past experiences to go by and the only time I have had reduction of disease it happened very quickly and my tumor markers halved in response to the meds - this response while quick was not sustained. I do have options left but with each treatment "failur" that list gets smaller. I seem to have a particularly fhemotherapy resistant cancer which is not well controlled either with herceptin. I am hormone negative so I have no hormone treatment options.

    Being on a trial I have to go with trial guidelines. So yes, if I get a result that puts the growth of the target lesions at the 20% mark or there is any sign of new disease I will be bumped from the trial regardless of whether the disease progression has been slowed significantly.

    My most likely next option is another drug which is currently not available to us in Australia and is not in any trials I can access. I can appeal for compassionate use but it is rarely granted. So for now, I am focused on enjoying christmas and getting the most out of this one.
    A x
  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015
    I am all for that Leonie! I think it will be my thought too. Have a wonderful christmas!
    A x
  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015
    Exactly Tonya - it can't be clear cut can it?
    Oh Christmas at our place will not be grey! (Well the skies may be but not the celebrations!)
    Wishing you. Wonderful Christmas.
    A x
  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015
    Yes Pam - I look at how quickly I bounce now and I'm amazed! Have a wonderful Christmas!
    A x
  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015
    Thank you Kathy - I hope you have a wonderful Christmas.
    A x
  • Anne Maree
    Anne Maree Member Posts: 173
    edited March 2015
    Hi Amanda,
    Such a difficult thing to be constantly challenged in this manner. Looking forward in hope like you are is the best thing you can do for yourself.
    Can family and friends step up for you at this time to give you more time to rest , meditate ,juice?
    Wishing you a wonderful christmas with your family.
    Xx Donna