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Jacqui64
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Joined 9 years ago
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Rising tumour markers, and advice needed regarding breast care nurse
I am now 71/2 months along since my diagnosis, and it's been one hell of a ride. I was started on Ribociclin but it affected my liver so I had to stop that, then I was on Palbociclin which last month showed a positive response to treatment with visibility of the tumours basically undetected. Now my blood tests have shown a slight increase in the tumour marker, from 86 to 92, instead of going down. So now I have to have ct scans, MRI's, and a possible pet scan to see what's going on. So here comes the anxiety again, wondering what's happening. I was told that it would be very beneficial to have a breast care nurse that is trained in all of this, and who I can contact when it's all feeling overwhelming. My oncologist works out of the Olivia Newton John centre, so I would preferably want a nurse who works from there. Does anyone know who I can contact about this, and has anyone been through something similar that could possibly reassure me about my situation. You were all so wonderful and so helpful when I was first diagnosed, and I'm hoping I can ask for your help one more time.Re: Kisquali
elisewjk said: 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 :) Hi Elisewjk. I'm in the middle of trialling Ribo, and a couple of my liver levels went out of whack in my blood test. I was on 400mg. I have to decide whether to change the medication completely, or whether to try 200mg. Did you have a similar reaction on the 400mg? I'm not sure how much of a difference there will be between 400mg and 200mg. I'm thinking I'd probably have to at least try it, or I'll always wonder "what if". Would love to hear your opinion if you don't mind. xxRe: Newly diagnosed with mets
Marieda said: Hi @Glynnis that all sounds good news for you. Good to hear. I was taken off Kisqali because it was having an affect on my heart, according to the ECG so have been put on palbociclip, which I am hoping is as good as Kisqali. I was told I could also go for 6 months before the next stent change, but left stent not doing the job as well as the right, so may have to change earlier. Bone mets don't seem to have changed so far. As if we don't have enough problems - wouldn't it be great to be able to do away with the stents! Best wishes for continuing improvements.. Hi Marieda. I've been reading through these comments, and was wondering how you went on Palbo? I've been on Kisqali but apparently my liver doesn't really like it, so I'm either going to try a lower dose, or try Palbo. Did you find it okay? It's got a very good reputation for success. Hope you're doing really well.Re: Newly diagnosed - Just need some positivity and hope
Hankster - Thank you so much for this message. I am a little more settled now, but still going through the weekly blood tests, trying to work out which medication will be the best, and cause the lease problems on my body. It's so strange to get a phone call to say that my liver is unhappy, because I feel so strong, and I'm walking for an hour or more every day. It's something I'm learning to get used too, but I really hope we can settle on a medication soon. I ended up getting an anti anxiety/depression medication, because I decided that it was all too much to deal with, and my body just needed a break from the constant anxiety. It's actually helped me to be more productive, and I've found the fight again, which I think is the most important thing. Hearing that most people are living "normal" lives is a huge comfort. Even today I was wondering if I would ever stop thinking about it ALL the time. I hope you continue to have the greatest and happiest life, and again, thank you so much for checking in. xxxxxxxxxxxxxxRe: Newly diagnosed - Just need some positivity and hope
Giovanna_BCNA said: Hello @Jacqui64 sending you a request to join the 'living with metastatic breast cancer group' which you may not be aware of and which is also part of our online community. Hi Giovanna (my calm voice on the other end of the phone last week). I will look it up now. Thanks for the reminder. xxRe: Newly diagnosed - Just need some positivity and hope
FLClover said: Hello @Jacqui64 It’s a shock the first time, so I can’t even imagine the second. Sounds like you are handling it better than you think, which is great. You are proving to yourself you are strong so that you can beat it again, and you are reaching out for help 👌🏻. You will definitely need to cry, be angry, shout etc, that’s a normal part of it. Lots of women have beaten it more than once, so hope should always be a priority. But I think one thing you always need to remember, that I think will help you come out of your cancer bubble of despair (this is how I felt and still sometimes do) is that you are very important and you deserve to be here on this Earth just as much as anyone else. And don’t let anyone or anything, especially not this cancer, tell you otherwise 👊🏻💪🏻🤗😘. Mon 🍀 Xx Thank you from the bottom of my heart for this message. I have read it so many times. Every part of it is so helpful. I cry and then I get mad at myself, but as you say, you need to cry. I love "lots of women have beaten it more than once" - this is so important for me to hear. And yes, my new mantra is "I deserve to be here on this Earth just as much as anyone else". I wish I could hug you right now. Thank you. xxxxxRe: Newly diagnosed - Just need some positivity and hope
ddon said: Jacqui, take your strength with both hands and know that you only have to do one day at a time. Next week doesn’t matter, and what might happen next month. You only have to do one day. Sending a big hug for you and for your family. Xx You're so right. I've always been one to plan ahead, and think about what I need to do for something that's happening in a months time. Now I need to learn to focus on one day at a time. That is enough sometimes. Thank you so much. xxxRe: Newly diagnosed - Just need some positivity and hope
Beryl C. said: hello @Jacqui64 - to use a sporting term, this 'hits you for six!'. Diagnosed nine years ago I can remember feeling as though the world had tilted on its axis. Afraser is right, you are still in shock, remember all feelings are ok. Stay connected, this is a very safe place to tell it as it is for you. Hugs. Thank you so much Beryl. It certainly does hit you for six, especially when you have no symptoms at all. It's definitely hard to hear, and shock is exactly what happened. I will definitely stay connected. I already feel better knowing there are other ladies who just get it, and whom I can talk too. My family are amazing, but I know they will need a break from it at times too. xxRe: Newly diagnosed - Just need some positivity and hope
Afraser said: Dear @Jacqui64 You’re still in shock - this is never the news anyone wants, especially when you thought you had left breast cancer far behind you. The world hasn’t ended but you have good reasons to find it hard to accept that. As days go by, and tests are done, and treatments proposed, you will gradually accept that the world (bit weird as it is) is still there, you are still part of it and can be for a long time to come. You just need to let your brain and body yell and shout a bit, first. Many others here on the network know first hand what you are going through and I am sure will send their stories to assist. Hope is always there, it just needs a bit of searching to locate it sometimes. Best wishes. Thank you so very much for your message. This has really resonated with me, and helped me to realise that I'm not losing my mind. Every now and then I can think clearly about it, and then the tears come. Today I walked for 7kms, to prove to myself that I am stronger than I think. Thank you, from me and my children, who read your message. xx
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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.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.
