Friday update 19 June 2020
Hello everyone,
Welcome to our Friday update. A very warm welcome to all of our new members
who have come on board over the last month, I do hope that you are settling in
and finding your way around.
Most of you would know that as well as
moderating the online community, I also respond to incoming calls on the BCNA helpline. It was lovely to read the following post from
@FLClover one of our recent new members regarding her experience of joining our
online community. It’s really heartening
to hear that she was able to find the support and connection that she needed at
the time that helped with managing some of her anxiety and depression. I do hope that you are feeling better and wish
you well with your treatment.
‘When I found out about this forum I didn’t want
to join straight away cause it would have made it ‘real’, but at the beginning
of my depression I called the helpline in my despair and talked (or rather
cried) to Giovanna, who thankfully made me join.
Since then I’ve been reading posts religiously,
on all topics, every day, and have gotten so many answers I’ve needed. It’s
also the only thing I could concentrate on when I was at my worst, everything
else was too painful, even talking to my daughter.
So yes, I can’t stress enough the importance of
this blog. Because it is truly the one place where people completely
understand. I even got referred to my new surgeon by a lady on this blog, which
changed everything for me for the better.’
Community Highlights
Each week we have lots of different discussions take place in the
online network. Here are some
conversations that you may have missed during the last fortnight.
1.Pregnancy
after breast cancer Thread
commenced by @Laura_Ann, thank you @sassyliz for your great response and
congratulations!
2.The
tears are driving me mad Thread commenced by @JacquiP asking what can she expect when stopping tamoxifen.
Hope you have been able to speak with your medical oncologist regarding
your concerns @JacquiP. Take care of you
3.
Wise
words post by @Blossom1961 is one of my favourites
Community news
Webcast - The psychological impact of a diagnosis of
early breast cancer –
Aired live 17 June 2020
A diagnosis of early breast cancer can be devastating and can trigger
several adverse reactions and responses. Many experience a range of emotions
including stress, sadness, fear and anger. It can also bring various
challenges, including:
- Coming to terms with the diagnosis
- How breast cancer and treatment affects body image
- Self-esteem and self-confidence
- Wondering ‘why me’
- Dealing with uncertainty and imagining the worst
- Dealing with practicalities such as family work and financial
adjustments - Dealing with the responses of your partner, children, family, and
friends to your diagnosis. - Where to find support
Facilitator: Kirsten Pilatti CEO BCNA
Speakers: Charlotte Tottman, Clinical
Psychologist & Jodie Lydeker, consumer
To view
webinar on demand click here
Counter Part – Women supporting women with
cancer.
Webinar - The emotional load of living with
advanced cancer
This is a Making Connections session
for women with advanced cancer
If you are living with
metastatic cancer that requires ongoing treatment and monitoring, you are also
managing a complex range of concerns and stresses. These can include:
emotions like grief, anger, fear, isolation, sadness; ongoing uncertainty about
the future; managing side effects from treatment; changing roles; concerns
about the impact of your health on loved ones; lack of understanding from
significant others; anxiety about scans, tests and the progression of cancer;
financial stress and the list goes on,
Monday 22 June
11 am – 12 midday
To view details click here
Two new compassionate access schemes for metastatic breast cancer patients
BCNA is pleased to advise that after many discussions with
relevant pharmaceutical companies, two new compassionate access schemes are now
open for patients wishing to access a CDK4/6 inhibitor for second or later line
treatment of hormone receptor positive, HER2-negative metastatic breast cancer.
To enquire about access to one of these schemes please speak with your medical
oncologist.
Ribociclib – first and second line treatment (Novartis)
The SPARK Plus access program, being offered by Novartis,
allows eligible patients to access ribociclib (Kisqali) free of charge for first
and second line treatment.
In this setting, ribociclib is given in combination with
fulvestrant (Faslodex), which is not currently available through the PBS.
Fulvestrant is not provided as part of SPARK Plus and must be accessed
independently, which will incur a cost.
AstraZeneca currently has an access program for fulvestrant
as a monotherapy. BCNA is not aware if the program is being extended to
patients wishing to use fulvestrant with a CDK inhibitor, but you can speak
with your medical oncologist.
Abemaciclib – third and later line treatment (Lilly)
Lilly has opened a special access scheme to provide
abemaciclib (Verzenio) for third and later line treatment. Patients will be
assessed on a case by case basis but must meet the eligibility criteria for the
MONARCH1 trial. These include:
- Prior
endocrine therapy (but no prior CDK4/6 inhibitor) - At
least two prior chemotherapy regimens, with at least one but no more than
two in the metastatic setting and one must have included a taxane - Adequate
organ function - Measurable
disease according to RECIST v1.1 - ECOG
performance score of 0/1.
In this setting, abemaciclib can be given as a monotherapy
or with fulvestrant.
PBS applications for ribociclib and fulvestrant
The July meeting of the Pharmaceutical Benefits Advisory
Committee will consider applications for ribociclib for first and second line
use, and fulvestrant in any line of treatment. BCNA has provided a submission
to PBAC in support of both drugs. The outcomes of the applications are due by
the end of August. For more information, see the agenda
for the PBAC meeting.
My Journey Online tool updates
My Journey online tool article updated 17 June 2020
Targeted therapies for hormone
receptor (HR) positive metastatic breast cancer
Fundraising update
Pink call
out to Tradies – 16 June – 12 July 2020
This June, Breast Cancer Network Australia (BCNA) is putting
a pink call out for tradies to buy and wear a pair of BCNA Pink Lady socks to
work to help support Australians affected by breast cancer. The #BCNApinktradie
campaign, is inspired by 21 year old apprentice plumber, Tristan McCulloch who
lost his mum in February this year after a six year battle with breast cancer.
For more information click here
Some online groups that you may like to visit…
Aboriginal
and Torres Strait Islander
Breast
Cancer Childlessness and Us
Christian’s
diagnosed with breast cancer
Living
with metastatic breast cancer
This week’s reflective quote
‘Compassion and tolerance are not a sign of
weakness, but a sign of strength.’
Dalai Lama
Enjoy your weekend everyone, stay safe
The mod team
Giovanna, Riki, Laura, Michelle & Pat
Comments
-
Thank you so much @Giovanna_BCNA!! For helping me when I first called and helping me join, and for the mention and well wishes 😊. As I said, this site and the online network have helped me immensely at such a difficult and important time, and I hope new members continue to find the same support, love and kindness we all have on here ☺️. It is necessary and does wonders for the soul, finding courage and recovery. Also a big thank you for the webinar on Wednesday, it’s exactly what I (and I’m sure all of us) needed. Everything they said was spot on, and validated how we feel. I’d highly recommend this webinar be also seen by family and close friends of affected women and men as it helps us be understood, and I think this is a vital part of our overall wellbeing, recovery and thriving after bc. Thanks again! ❤️4
