More details of trial .It will run for a year Help!!!!!!!

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fairydust
fairydust Member Posts: 290
edited April 2017 in General discussion
Feeling devastated today and I received details of trial. One year.... six months weekly then monthly for six months. I will have to travel to Peter Mac Parkville.  All drugs have side effects this one not too  bad. My husband is over it wants a break  for me.
As I am triple negative I cant take any drugs. So what am I complaining about when others have to take drugs for five years plus.
I am probably venting my sheer frustration at not being able to leave hospitals and doctors behind. Thanks @Primek who mentioned a positive experience for her sister.
I cannot say no as I will feel guilty if I do. I have a chance to reduce my chances of cancer reoccurring I know I should take it . Another year of being a patient........I was looking forward to being normal ..long holiday...climbing Mt Everest (not really).
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  • iserbrown
    iserbrown Member Posts: 5,561
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    Well I  say excellent!  Yes you are understandably worn out by it all and would love to find normal again! How good is that a trial treatment that may give a better outcome. Peter Mac Parkville is easy to get to. A couple of tram choices on Elizabeth street. 
    Go girl I'm sure you will benefit greatly. 
    Take care and sending you a virtual hug xx
  • iserbrown
    iserbrown Member Posts: 5,561
    edited April 2017
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    You mention taking drugs. I've only got 2 months and 8 years to go with my drugs! Lucky me geez!
  • ccasper
    ccasper Dragonfly Posts: 190
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    Is the trial if you are brca positive? Just curious
  • primek
    primek Member Posts: 5,392
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    Yes...how does someone get on it? I have a friend who had (hopefully) tnbc, gene neg. but would be interested in the trial. Is it age dependent etc. 
  • fairydust
    fairydust Member Posts: 290
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    Thanks to everyone. The trial is very specific. You have to be cancer free and have had your last treatment  within12 weeks ago. You also have to have the good old bracken gene. Age doesnt seem a factor. However the usual stuff like questionnaire what drugs are you on heart problems etc  I am lucky enough to be very healthy umm  umm well I did have cancer. They also take a family history.
    The good news is with this drug they have trialled  it on metastatic cancer patients and seen improvement by up to 4o percent. The doctor told me that in ovarian cancer in some cases they have improved extent of life by 19months.
    Good stuff hey. 
    Another point of interest was I need to get my ovaries out and I was told to go to a gynecologist who specializes in oncology as the test result are more accurate? anyway thats her recommendation.
    So looking forward to a fun year.  All follow ups now will be at Peter Mac.  As to getting on the trial I suppose ring Peter Mac. I have to be ready to start May 30th. May 10 another appointment blood mri etc the usual tests.

  • AineG
    AineG Member Posts: 53
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    Hi @fairydust I know a year of treatment seems like the last thing you want. I know when I was told 10 years of hormone treatment I freaked out.  But then I thought if that's the thing keeping me alive I started thinking why only 10 years.  I'd love to live longer!!! :)

  • Zoffiel
    Zoffiel Member Posts: 3,372
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    @fairydust We are all encouraging you to participate, but I never like to hear 'I can't say no.'

    Regardless of who suggests what for whatever reason, something we all have the option to do is refuse.

     It's difficult when you feel cornered, when people around you have conflicting ideas and you are finding it difficult to balance the pros and cons of a proposal. These things are huge commitments; the benefits for you may be significant, but so are the costs.

    I think we all freak out when faced with another year of this or ten years of that. The time passes anyway, regardless of what we are doing. If you can manage 32 visits and you fully understand the way these trials run and what the implications are for you if you are in the control group, do it. If it's going to make you miserable, maybe don't. If you can run this past an independent counselor in the next couple of days--that may be part of what they are offering you--Id say that was a great idea. Supportive as we may be here, we can be a bit one eyed when it comes to potential opportunities. Marg.
  • iserbrown
    iserbrown Member Posts: 5,561
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    Hi do you need a name of a Melbourne Gynaecology Oncologist?
  • fairydust
    fairydust Member Posts: 290
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    @iserbrown thank you.. I dont think pretending this is not happening is working.. Yes please I am in Melbourne and would appreciate the name of the gynaecologist.. Generally I cope pretty well with operations just got to do it.I think we are lucky being in Melbourne. Great hospitals fantastic doctors.
  • iserbrown
    iserbrown Member Posts: 5,561
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    My Gynaecology Oncologist is Prof Robert Rome. His rooms where I see him are at Epworth Victoria Street East Melbourne.  I was referred to him via my GP through my medical oncologist who is next door Prof Michael Green. 
    Good luck with it all.

  • fairydust
    fairydust Member Posts: 290
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    @iserbrown thank you time to make some plans.
  • Bakdom
    Bakdom Member Posts: 21
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    Fairydust, I completely hear you. I finished treatment last month but as i'm planning on participating in a trial I still have many doctor/hospital visits and tests. As I had a er+ cancer i'm already on two different medications and the trial will mean a potential third medicine all have side effects. It's important to remember that if participating in the trial gets to much you can opt out at anytime. Personally my fear over a possible reoccurence motivates me to do everything I can. Best of luck..