Member: Ellamary98 | BCNA Online Network

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Re: Kisquali
That's not good to hear at all. I despair at dental treatment in between cancer treatment. It doesn't seem fair! I was on Ribo for about 3 years. It worked well for me, putting my bone mets to sleep, until my cells became resistant to hormone treatment. I hope it lasts that long for you, or longer! Good luck with managing the jaw pain, hopefully a root canal will do the trick. xx
3 years ago Place Living with metastatic breast cancer
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Re: Kisquali
Hi @Jen_B. I’m done with this treatment and onto paclitaxel now. Sorry to hear that you’re having jaw pain- I hope they’ve found an answer for that. You don’t clench your teeth at night? Xx
3 years ago Place Living with metastatic breast cancer
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Re: Choosing to stop treatment
@ilovewhenitrains , I agree with others. Do what you want to do in your heart and make it very clear to your loved ones.I firmly believe that every last day of our lives, even with this disease, belongs to ourselves. If you want your last months to be free of treatment, then go for it. And yes, specialists are just providing prognoses based on their experience with other patients. We are all so unique. I hope you are able to settle on a course of action (or inaction) that you feel good about. Lots of love.
3 years ago Place Living with metastatic breast cancer
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Re: Kisquali
Hi Apricot. My hair was already thin when I started each of those drugs (separately). It actually thickened up significantly when I moved off the hormone-based treatments, but I know how deflating it is to watch your hair disappear. It can feel like the final indignity, especially when you know it is not just temporary. I am preparing for hair loss with my next, impending, line of treatment and this time around have decided to have a wig consultation and try some out. Otherwise, I reckon it's all about a very short cut and great head gear. Maybe a good thickening shampoo (I used Phillip Kingsley products). Best of luck to you. xx
3 years ago Place Living with metastatic breast cancer
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Re: Kisquali
35 years!! All power to you, @Apricot. I'm about to tick over ten years and I'm exhausted. I never took the Kisquali and Fulvestrant as a combo, but have experienced both. I don't recall having any dramatic side effects from the injections, but the Kisquali took some time to settle down. Good luck-I hope the effects have reduced for you.
3 years ago Place Living with metastatic breast cancer
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Re: The Original Otis House in Bendigo (where the idea started) has burnt down. :(
It is certainly a blow to the foundation. I stayed at Bramare with my family in 2014 and we had a really wonderful time there. It was so restorative to spend time in nature and enjoy Bendigo’s charms. This is a tremendous charitable foundation for BC women and families.
3 years ago Place General discussions
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Re: Cancer Australia FAQs COVID-19 Vaccine
My GP has suggested I can have a 5th shot, as this would really be my 2nd booster ( given the 3rd shot was considered part of the initial regime for cancer patients). However, my oncologist thinks I don’t need it, even though my last booster was in April. I had a rough 36 hours after each booster, and he thinks I should avoid it. I have not had covid yet, despite living with 5 young adults and teens, but as I’m currently on chemo, I must admit I am concerned with the new health advice!
3 years ago Place General
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Re: Chemo second time round - knocking me
That’s nice of you to say, @eddiek. I’ve been generally very well until this year, but the Caelyx is actually helping to get me active again, despite the fatigue. My mets are in my spine, rib and a couple of small ones in my liver, which we are trying to get rid of before they settle in! Unfortunately the oral chemo options haven’t worked for me - side effects required too much dosage adjustment, so I don’t have any option but to move onto IV drugs. I’m still working, but have reduced my hours a bit. Life is pretty much as it has always been, just with a few naps thrown in, and some support where I need it ( like housecleaning!). After my surgeries, though, I remember the fatigue felt endless, especially brain fatigue. My nutritionist has been an enormous help in managing side effects from the chemo this time around, so that is one allied health service I would highly recommend. Massage may also be a good support. I have also joined a small support group for women with Stage 4 BC, and this has helped me emotionally, with a safe space to talk and listen. Good luck with it all, and be extra kind to yourself. You can do this!
3 years ago Place General
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Re: Chemo second time round - knocking me
I'm feeling for you, @eddiek. I'm on Caelyx very 4 weeks , for as long as it works and I can tolerate it. With my initial chemo in 2013,I knew it was just 8 rounds to endure- now it's endless and, after 2 rounds, I am already feeling the fatigue.Surgery really does take some time to recover from, physically and emotionally,so you have had a lot to deal with recently. It's not surprising that you are suffering this way. I agree with comments above - both to try your best to accommodate your fatigue and if it all gets too much, ask your onc to adjust the dosage or regime. Sometimes a simple tweak can make a big difference. There are also some supplements that can be helpful in combating fatigue and other side effects. Take care and I hope things improve for you soon.
3 years ago Place General
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Re: Lump below collarbone Looking to others …
Hi @Newbie3312. I just read your post and wonder how your scan went? I hope it is not as you dreaded, but it sounds as though your current treatment was taking its toll regardless. I hope things have settled for you, and also that your ribs have fully mended. Ouch!
4 years ago Place Living with metastatic breast cancer
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Groups

Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
Choosing breast reconstruction
PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.

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Ellamary98

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Living with metastatic breast cancer

Let's talk: vaginas, menopause & me

Choosing breast reconstruction