Forum Discussion

Kimee's avatar
Kimee
Member
7 years ago

Avastin

Is anyone out there with metastatic TNBC with skin Mets on chest wall using Avastin?
could you tell me about your experience as this is about my last resort but onc doesn’t really give it a big wrap but I do understand it can only give me some extra time if it was to do something but that’s something I’m looking for whilst I’m still hoping for a miracle.
Also there is a large cost until proven to be working before it will be funded as it is done more individually I believe.
Thanks Kimee
metastatic-breast-cancer

4 Replies

  • TripleNegMama's avatar
    TripleNegMama
    Member
    7 years ago
    Hi Kimee,  thinking of you and wondering how you got on with the Avastin.  My TNBC is progressing now with lung mets and skin mets so I expect I'll be learning more about skin mets as things move along.  I see Avastin is also known as bevacizumab I'm now on the AZTEC trial which includes another one of the mabs I had my first dose of Atezolizumab 2 weeks ago.
  • SoldierCrab's avatar
    SoldierCrab
    Member
    7 years ago
    HI Kimee, I am sorry I have no knowledge of Avastin....  
    a few suggestions 

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

    I help admin the TNBC group on facebook  there might be others in there who can answer your questions 

    https://www.facebook.com/groups/1166665270079659/
    This is a closed group for women who have been diagnosed with Triple Negative Breast Cancer.
    You are welcome if you are living with this diagnosis, whether or not you have finished treatment or continue with the disease for life. This is a closed group so feel free to discuss any issues, ask any questions or growl and praise as much as you like, it is a safe environment among people who will understand. However, this site will be monitored for inappropriate or incorrect information.
    Liz Fistonich began this group, together with Hege Engebrestsen in 2016. 
    These two beautiful women have since gained their wings and are no longer with us. Although they are dearly missed, this support group continues in their honour. May we continue to use this amazing forum appropriately, the way in which it was intended when they began it.
    *All Members of the Group need to be a friend with one of the Admins of the Group. This way we will have a way of communicating privately with you when needed.*
    Code of Conduct:
    1. Members have all been diagnosed with Triple Negative Breast Cancer
    2. Disagreements will occur however let's make sure they stay constructive and will be deleted if they become personal or with bullying intent. The administrators hold the right to remove anyone from the group including posts or entire threads.

    I agree with @wendy55 that the help line might be a good option for some one on one about the drug etc. 

    triplenegmama thanks for the vote of confidence but I am only as good as the next person along from me.... 


    Kimee I hope you can get some answers that will help you choose what option to take.

  • TripleNegMama's avatar
    TripleNegMama
    Member
    7 years ago
    Hi Kimee, Sorry I don't know much about Avastin or skin mets but maybe @SoldierCrab might know as she has a wealth of TNBC experience.
  • wendy55's avatar
    wendy55
    Member
    7 years ago
    Hello Kimee,
    Whilst I cannot answer your question about Avastin, perhaps ringing the 1800 helpline number and speaking to one of the cancer nurses there  would be a good idea, there are so many different treatments for this horrid disease, lets just hope that maybe someone else has had a similar expereince and can come up with some answers for you.
    I am so very sorry to hear of your prognosis, it sounds like you have had various treatments in the past, I do know that TNBC is attracting a lot of interest and there are a few clinical trials around at the moment, we have a member called @TripleNegMama, perhaps she may have some encouraging words for you, I guess you have to listen to your oncology and treatment team and then just go with what your instinct tells you, there are no nice or pretty words that I can use to make this any better, I wish there were,do you have family support, and do you have someone to confide your fears to, BCNA have a service available for us mets ladies, her name is Dr.Carrie Lethborg, its a free service, she specializes in only cancer patients and if you want you can ring the 18000 number and make an appointment, she will ring you in your home at a good time for you, just google her name and you can find out about her, I have met her and I have talked with her several times and you could not wish for a more caring listening ear than hers, I dont know what more I can say, you have had a hell of a ride on this medical merry go round by the sounds of it,we all feel your pain, your fear and uncertainty,and if you want to use this forum as a means of asking questions or for support please go right ahead, there is always someone around,
    even during the middle of the night in the Night Howls Discussion Group, we are all looking for that miracle, AND we can only hope that it will come sooner rather than later, its all we have to hold on to, never give up hope,
    a big hug to you from me,
    wendy55