Member: elisewjk | BCNA Online Network

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Re: Very dry eyes
My Optician recommended Hylo Forte, both morning and evening. Has worked quite well for me. They cost about $32, available at the Optician's store only that I've found.
1 year ago Place General
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Skin Rash Side Effect with Exemestane (Aromasin) & Everolimus (Afinitor)
Hi All, I'm on week 5 with this treatment combo now. This last week I've broken out in a pretty bad skin rash, starts of red/pimply look and evolves into joining up into large red blotches. Its just horrible - I'm sure people will start thinking I've got Monkey Pox now! :o :D :( I've been to my GP on Onco Nurse's advice as my Once has been away with a family emergency. I've got every known pill and potion to conquer the rash/itchiness - antihistamine, steroid cream, Pentarsal, Chamomile lotion, moisturiser which seems to be managing it mostly. I know its a known side effect. Has anyone else had this side effect please? Does it persist for the whole treatment, or for only a little while and will then disappear in a good time/few weeks? How did you manage it? I did get mouth ulcers Weeks 2-4 (well managed with Dextamestane that I've now stopped), but they seem to have gone away for now anyway... Any help, guidance so very gratefully appreciated. Cheers
4 years ago Place Living with metastatic breast cancer
treatment
treatment-options
working-through-treatment
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Re: TUMOUR MARKERS DECREASED BUT SCAN SHOWS INCREASE
Hi @amanda88, I'm sad to say that I have to agree with those above. The Tumour Marker tests aren't always reliable. My Onco has little faith in them when looking at my journey, we keep doing them more to appease me and track my blood tests :) Mine often chop and change and nothing in line with other tests or events and are so low that it says I shouldn't have the Big C! :o And alas that's not true, as I'm a Stage 4 with Bone Mets since Oct 2018... And I went thru every test possible to prove that...blood tests, biopsies, mammograms, ultrasounds, CT, Bone scan, PET scan, MRI and spine bone biopsy. I know "scaniexty" is not easy, its best to discuss the results of your tests with your Drs when you have them all and then determine what can be done as the next step. Take care, hugs :)
4 years ago Place Living with metastatic breast cancer
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Re: Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi @PollyMammary, have you discussed all your side effects with your Oncologist? The protocol is to start you on 600mg Ribo but more than half of people can't deal with the side effects. Indeed I suffered horribly with nausea, fatigue and low neuts, amongst many and varied other side effect combinations in my trials to find the right dose for me. They can reduce your dose (just as effective) and you wouldn't have to suffer the side effects so much. I started this post in 2020, I'm now on Cycle 37, some 3 years later, on 200mg Ribo's... The Onco recently told me that I'm his longest patient on this combo now and to keep up the good work! Pressure! :D lol :) I have my fingers crossed and hope the good work continues a little while longer still ;) <3 Stay well, take care :)
4 years ago Place Living with metastatic breast cancer
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Re: Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi @hopeful_cath01 I was diagnosed as Stage 4 Denovo with bone mets in Oct 2018. I started the same regime of drugs you have Ribo's, Letrozole and Denosumab. The protocol is/was to start you on the highest dose of 600mg. The studies showed that a large proportion of people just can't stomach that dose due to side effects, the most common being nausea and low neutrafils. I too suffered immensely on 600mg with nausea even with the maxelon and neutrafils went too low. So after some trial and error, many side effects, down to 400mg then down to 200mg. My body found my happy place was 200mg with minimal side effects, no nausea and I've been on that dose since then. The lower dose is just as effective as a higher one, its just that your body has to find the happy place where it can deal with them. Please discuss this with your Oncologist... When I started the drugs were still fairly new so I went thru several cycles to try and find the sweet spot for me and I had varying and different side effects each cycle til I settled. Please note all your side effects and discuss them with your Onco... your quality of life is important too. :) Best wishes, take care. Hugs Elise
5 years ago Place Living with metastatic breast cancer
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Re: Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi, this seems to be quite common. Mine are often lowish and my netraphils hover around 1.0-1.2. I have to stay above 1.0. I'm on 200mg Ribos for 29 cycles now. Was de novo with bone/spine mets, diagnosed in Oct 2018. How that helps some? Hugs
5 years ago Place Living with metastatic breast cancer
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Re: Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi @LucyDee - I'm sorry to hear about your skull mets, how will they be treating those? And I'm glad to hear your T11 radiation has been somewhat successful. I too have a spot in T11 amongst many others along my spine - at this point still relatively small and stable. May I ask how you are coping on the Tamoxifen? I understand that will likely be my next treatment also... Take care of yourself, hugs! :)
5 years ago Place Living with metastatic breast cancer
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Re: Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi Everyone, I've been on Ribo's 200mg, Letrozole and monthly Denosumab needles since Nov 2018. Denovo with bone mets in spine. Scans just before Xmas, still holding everything at bay, next scans in March. So I've had 27 cycles now, still hanging in there! :) Must admit tho, have a little anxiety in the back of my mind as to when I might progress... But for now, I'm continuing to enjoy life and do all the things I like to do :) And I'm still coping ok with working full time, bonus :)
5 years ago Place Living with metastatic breast cancer
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Re: Ribociclib and Anastrozole
Hi @Angelo, Ribociclib (and some other treatments) is only available on the PBS if it is a "first line" treatment. Otherwise, it is not subsidised and people have to pay the full price for it themselves.
6 years ago Place Living with metastatic breast cancer
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Re: Kisquali
Hi #joinmelb, I've been on the Ribociclib/letrozole/denosumab combo successfully since Nov 2018. I was Stage 4 de novo with bone mets in my spine. My tumours have shrunk significantly and spine mets is inactive/stable. I'm on the lowest dose of 200mg of Ribo's 3 weeks on, 1 week off. I would be questioning the dosage of Ribo's that you are on, it sounds like you have a few too many side effects. Perhaps discuss this with your Onco? I've been thru all the stages of 600mg and 400mg doses which didn't work for me, I've had varying/different side effects on both doses. 600mg 60% of people can't stomach at all, but its the protocol they have to follow to start you on. On 400mg, my neutraphils were still dipping too low (amongst other side effects), so I (luckily) finally settled on 200mg with little/bearable side effects and has been working very well so far. My hair has thinned a little bit (ie. some fall out more than normal), however it does continue to grow back and it certainly doesn't fall out in clumps. I have my hair cut short, and use thickening shampoo and conditioner. My friends tell me it looks the same as it used to, so it can't be too bad :smile: Big hugs and kind regards :)
6 years ago Place Living with metastatic breast cancer
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Work and breast cancer
PUBLIC GROUP - This is a space to connect around the challenges and questions that come with managing work and breast cancer. Whether you're navigating time off, returning to work, dealing with workplace conversations, or exploring your rights and options, you're welcome here. This group is open to the public (not just members of our online network) to help broaden access to important information, practical advice, and peer support.
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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.
Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.
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Whether you're caring for a partner, parent, child, or family member, this group offers a safe and understanding place to connect with others in similar roles. Share your experiences, talk through the personal challenges of being a carer, and find support from a community that truly understands the emotional and practical realities of caregiving for a loved one with breast cancer.

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elisewjk

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