Trials

mandycoop
mandycoop Member Posts: 87
edited November 2016 in Community news and events
Hello there lovely Triple Negative Sisters.
Has anyone here been involved in clinical trials during their treatment ?
There seems to be a lot of press about PARP inhibitors and I wonder what your knowledge of them are.
I live on the Gold Coast, how many others live in SE Queensland? Who would you recommend to see about new treatments, if any.
I am getting the standard FEC and Docetaxol but want to know if there is anything out there to reduce my chances of recurrence.
What was everyone else regime? I've also read about studies involving Metformin, platinum drugs and feta blockers . Any thoughts.
Mandyxx
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Comments

  • AngelaSF
    AngelaSF Member Posts: 9 ✭
    edited March 2015
    Hi Mandy
    I too had read stuff about parps and was anxious to receive the most upto date treatment for a cure for this dammed Tnbc I was diagnosed with in October.
    I spoke to my oncologist this December who explained about results of recent trials and that parps were not an option for me as it would compromise the doses of the other agents taxol and platinum that I was about to start ( have done the mastectomy and 4 rounds of AC ). I know lots of people have different regimes.
    Anyway I felt so much better after talking to him and went out of his rooms happy for the first time!!
    I am pretty sure he told me there were no trials in aus with parps at present. My advice is ring and get an extra appt with your oncologist and ask and that way they get to know that you want to know as much as possible . Hope that helps and good luck

    Angela
  • mandycoop
    mandycoop Member Posts: 87
    edited March 2015

    Hi There Angela

    Thank you for your reply. Where abouts are you having treatment? I am not having a platinum as part of my treatment and would like to discuss this with my Oncologist. What stage etc are you Angela?

    Mandyx

  • Annie Gayed
    Annie Gayed Member Posts: 204
    edited March 2015

    Hi Mandy,

    This is Annie from BCNA. I thought I would jump on here and mention that the Australian Cancer Trials website (www.australiancancertrials.gov.au) allows you to search for clinical trials. I did a quick search using the key words 'triple negative' and a number of trials came up.

    Also, I thought I'd mention that there is a face-to-face support group specifically for women diagnosed with triple negative breast cancer, which meets Chandler QLD. For more information about the group, visit the member group section of the BCNA website.

    All the best Mandy,

    ~Annie

  • mandycoop
    mandycoop Member Posts: 87
    edited March 2015
    Thank you Annie. As everyone I just want to make sure I'm getting the most up to date treatment possible. I have looked Into trials however they appear to be for advanced TNBC.
    I am, thankfully, stage 2a with clear margins and negative sentinel node but with this beast you never know.
    My oncologist is giving me what he considers Gold Standard chemo which is FEC and Docetaxol but I do know regimes differ in different states.
    I have read that platinums are very effective with TN and I wonder if I should push to have it added to my treatment.
    All advice welcome!
    As a nurse I feel that Gold Coast risks being a little behind the likes of Melbourne and Sydney and I wonder how I find out their standard treatments ?
    Mandy x
  • AngelaSF
    AngelaSF Member Posts: 9 ✭
    edited March 2015
    Hi Mandy
    I am in Brisbane. If you are not confident then discuss it with your oncologist and you do have a right to ask them to refer you for a second opinion .
    Everyone's cancer is different and comparing regimes is impossible. My cancer was further advanced than yours and now I think of it as removed and chemo is my insurance policy.
    Good luck and yes you deserve the best treatment available.
    Angela
  • WendyS
    WendyS Member Posts: 13
    edited March 2015

    Hi Mandy, I just went and seen my ONC for the first time on Thursday and I was given TC as my chemo for TNBC.  My tumour was 2.5cm and grade 2, 1 sentinel node had a micromet so having full axilla clearnce on Monday.  I may ask my ONC about platinums next visit as you are like me and want to do everything possible to kick this cancer in the butt for good!!!  It is weird that everyone seems to have different chemo's for TNBC!!! My Oncologist travels from the Peter Mac Clinic in  Melbourne over to Tassie for 3 days each week!

  • WendyS
    WendyS Member Posts: 13
    edited March 2015

    Hi Mandy, I just went and seen my ONC for the first time on Thursday and I was given TC as my chemo for TNBC.  My tumour was 2.5cm and grade 2, 1 sentinel node had a micromet so having full axilla clearnce on Monday.  I may ask my ONC about platinums next visit as you are like me and want to do everything possible to kick this cancer in the butt for good!!!  It is weird that everyone seems to have different chemo's for TNBC!!! My Oncologist travels from the Peter Mac Clinic in  Melbourne over to Tassie for 3 days each week!

  • paulag
    paulag Member Posts: 98 ✭
    edited March 2015
    Hi TNBC sisters,

    I'm in WA and finished chemo a year ago. I also had FEC and docetaxel. Would be very interested in hearing about platinum. I had mastectomy and node clearance. (1/37) I also had radiation for 5 weeks on my chest wall. I was grade 3 stage 2.

    Paula xxx
  • AnnieR
    AnnieR Member Posts: 4
    edited March 2015

    Hi Mandy

    I to have been diagnosned with TNBC I live on the Gold Coast and have an appointment with the oncologist on wednessday.

    I opted for a bilateral masectomy my recovering is going well except for a bit of fluid does any one have any tips on how to help move the fluid.

    I didnt have any lymph node involvment which is a real positive

    Not sure what to except with  my appointment I have been told that I will be given a couple of different choices with the chemo gosh how do you choose??

  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    I'm on the Gold Coast as well.  I was diagnosed Triple Negative stage 3 with no lymph involvement.  41mm tumor resulting in a single mastectomy.  Clear margins at the sides however only a 1.4mm clearance to the chest wall.  Apparently they like 2.0mm.  I am having FEC and Docataxol, 3 of each and I have just finished the FEC last week.

    I'm now debating with my surgeon, my oncologist and a radiology oncologist whether I need radiation.  One says no, one says borderline, one says borderline but they recommend it.

    I tend to think like Annie that the cancer was removed and that chemo is my backup to make sure there aren't cells still floating around awaiting the chance to form more tumors.  I don't believe in taking more medication than is necessary however there is always that lingering doubt about my decision to not have radiation.  I have read and been informed that the statistics for radiation in my circumstances will give me an added 3% chance of non recurrence within 5 years.  That is a very small statistic to want to undergo 25 rounds of radiation for.

     

     

  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    I'm on the Gold Coast as well.  I was diagnosed Triple Negative stage 3 with no lymph involvement.  41mm tumor resulting in a single mastectomy.  Clear margins at the sides however only a 1.4mm clearance to the chest wall.  Apparently they like 2.0mm.  I am having FEC and Docataxol, 3 of each and I have just finished the FEC last week.

    I'm now debating with my surgeon, my oncologist and a radiology oncologist whether I need radiation.  One says no, one says borderline, one says borderline but they recommend it.

    I tend to think like Annie that the cancer was removed and that chemo is my backup to make sure there aren't cells still floating around awaiting the chance to form more tumors.  I don't believe in taking more medication than is necessary however there is always that lingering doubt about my decision to not have radiation.  I have read and been informed that the statistics for radiation in my circumstances will give me an added 3% chance of non recurrence within 5 years.  That is a very small statistic to want to undergo 25 rounds of radiation for.

     

     

  • mandycoop
    mandycoop Member Posts: 87
    edited March 2015
    Casjsa, why were you stage 3 if your tumour was under 5cm? Or was it grade 3? I thought it was Stage 2 if under 5cm. It's all so confusing isn't it.
    Has anyone's surgeons or oncologist talked about the vascularity of their tumour?
    AnnieR who are you going to see? Wow to be give a choice is tough. It will be interesting to see what options you are given. I was just told I am getting the Gold Standard in chemo. Lol.
    Who was your surgeon and what stage were you at?
    Mandyx
  • mandycoop
    mandycoop Member Posts: 87
    edited March 2015
    Casjsa, why were you stage 3 if your tumour was under 5cm? Or was it grade 3? I thought it was Stage 2 if under 5cm. It's all so confusing isn't it.
    Has anyone's surgeons or oncologist talked about the vascularity of their tumour?
    AnnieR who are you going to see? Wow to be give a choice is tough. It will be interesting to see what options you are given. I was just told I am getting the Gold Standard in chemo. Lol.
    Who was your surgeon and what stage were you at?
    Mandyx
  • mandycoop
    mandycoop Member Posts: 87
    edited March 2015

    Hi Wendy

    Do you live in Tassie? I am grew up in Hobart. 

    What stage/grade etc are you?

    Mandyx

  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    I'm sorry, I might have my wires crossed on grades and stages also.  I think I might have been grade 3 stage 1 but who knows?  The surgeon that I have isn't overly forthcoming with information.  As far as I'm concerned it was a big tumor that shouldn't have been there.  What it was classifiied as is irrelevant.

    Annie, I'm trying to arrange coffee for a few people at Griffith Uni on Friday afternoon this week.  I'm writing a story for a university assignment and I'm interviewing breast cancer patients.  I'd love to meet you if you are available?

    Cas x

     

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