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Mum with Stage 4 Secondary BC & Bone Mets - Advice Needed

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Re: Mum with Stage 4 Secondary BC & Bone Mets - Advice Needed

Thank you so much for replying. That has really put my mind at ease that there is hope she will live a ‘normal’ life. The oncologist was quite pessimistic thinking about it now, but her breast care nurse said it was one of the ‘better’ ones to have of secondary. Maybe I need to focus more on that rather than the oncologist’s dates. Wishing you all the best with your treatment, let’s all beat this disease!!!

Thank you so much to all of you for responding, I will definitely reach out to the other side of the forum and those advice lines. 
Take care all xxx

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Re: Mum with Stage 4 Secondary BC & Bone Mets - Advice Needed

Hi - As seabreeze has suggested if you post in the secondary area of the forum you will get more replies. I have stage 4 - mets to lung and bone (including sternum, rib, spine and pelvis). I am also on the same treatment as your mum (Palbociclib, denosumab, letrozole and zoladex). It took around 3 months for my body to get used to the meds. I suffered a bit with headaches, nausea and tiredness initially. But I’ve been on treatment for 12 cycles now and my disease is stable and I am doing well. I live a normal life, work full time and am very active - getting out for hill walks and runs etc. My hair is as thick as it ever was so I’ve had no problems with hair thinning. Teeth problems are not inevitable you just have to keep an eye on them and look after them. I haven’t had any teeth problems. Also it sounds like your mum’s oncologist has been quite pessimistic about how long the treatment plan will work for. The clinical trials for Palbociclib did show an average of 2 years but there are ladies who are stable on it for longer. I know ladies who have been stable on it for 2 / 3 years and are still doing well. Also if you look on some of the American chat boards where Palbociclib has been around for longer there are ladies who have been stable on this for as long as 5 years. In terms of pain management, when I was first diagnosed I had a lot of bone pain. Your mum should have a palliative care nurse to talk to about this but I think most of us are on morphine to control pain. I was given oramorph and combined this with paracetamol and naproxen. The denosumab is a great pain killer and within about 3 months of starting this treatment I was able to stop using morphine and my bones are now all healing and repairing. I would say most days I feel pretty normal and live life as I did before my diagnosis (I’m 42). So there is hope out there and the other thing to bear in mind is that there are lots of treatment lines so even if Palbociclib doesn’t work there are other treatments to move onto. I know of ladies on their 6th / 7th line treatment. Sending lots of love to you and your mum xx

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Re: Mum with Stage 4 Secondary BC & Bone Mets - Advice Needed

That sounds so tough and unfair, and you need to remember to look after yourself too, to help you provide all the love and support to your mum. Off the top of my head for things to do I can think of podcasts and audiobooks, mindfulness colouring books, listening to music, and puzzles, crosswords, word games available as phone apps.

I think the advice in the previous reply is really sensible too. You have to be assertive and insist that someone helps with pain relief as a priority. This can be really hard but the  breast cancer care nurses on the breast cancer care helpline are really well informed and helpful. Your GP or hospital should be able to refer your mum for psychological support too. I was referred by the breast care nurse at the hospital I attend.

 

Good luck with it all 🌷🌻

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Re: Mum with Stage 4 Secondary BC & Bone Mets - Advice Needed

Hi Blue21,

Welcome to the forum - it's a really good place for advice and support and really good of you to seek advice on behalf of your mother. Sorry to hear she's currently feeling so unwell and in pain. It sounds like she has been through a lot over the past few years. 

I wish I could answer all your queries (not an expert on stage 4...) but wanted to suggest you post in the "living with secondary cancer" section of the forum, since your message will be much more likely to be seen/replied to by women who have had similar treatment and pain issues - and who are therefore well placed to share their experiences and anything they found helped ease pain and uplift spirits.

You might also want to phone the Breast Cancer Now nurse to ask for advice (telephone number at top of the web page). Breast Cancer Now also offer a "someone like me" service - usually it's for the person who has breast cancer, I'm not sure if your mother may at some point feel up to speaking to anyone or even if this may help you to have support and advice for your mother (you could ask if this would be possible?)

Re financial side and benefits, you could try ringing MacMillan. Maggies centres and The Haven may also be able to provide advice, although I'm sure women posting in the living with secondary cancer section will get back to you with lots of helpful info and support as soon as you post there.

Hoping your mother finds something to ease the pain, help her to be able to follow an interest and get some enjoyment soon - when I was recovering from treatment I always found the sight and sounds of nature engaging, enjoyable and calming.

Sending you a big virtual hug. I hope you are getting support yourself from a friend, partner or other family member.

Seabreeze X         

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Mum with Stage 4 Secondary BC & Bone Mets - Advice Needed

Hi All

I hope this is okay me writing in this. My mum has recently been diagnosed with Secondary Breast Cancer in her right breast and it has spread to multiple parts of her bones, including ribs, sternum and a few vertebrae. One of her vertebrae in particular is quite affected so and is in a lot of pain around the area. She is currently bed ridden, she can get up on some days but ends up in extreme pain which retires her back to bed. Luckily she is no longer working (however financially we need to sort out if she can get any benefits) but spends most of her day in her four bedroom walls. Is there anything you can recommend for her to keep her mind active? She reads a lot but I think she is slipping into a depression as she has no interest in anything whatsoever. It's heartbreaking seeing her in pain but it's even worse watching her become a shell of herself. She had a full hysterectomy around 3 years ago after around 10 years ago of surgeries cutting out abnormal cells - all of it feels a bit unfair! But this isn't fair for anyone either way. 

She started treatment yesterday - she is on Denosumab , Letrozole and Palbociclib. An injection every 3 months along with the tablets every day (Palbociclib 3 weeks then a week off) - Is anyone on these too? The doctor advised there wouldn't be any hair loss, but hair thinning will probably be likely - along with the dental problems. Has anyone got any tips?

Sorry for the long ramble, I guess what I would love help with if anyone has any ideas is just:

How to make her more comfortable with the bone pain from the bones mets?

Any tips for the medication she is on?

Just any other advice you can give? We haven't asked for the prognosis, I think we're all too scared too. The doctor said this treatment can only work for two years - I guess I'd love to know anyone who has been diagnosed with Sec Bone Mets and lived a lot longer...

Thank you for reading, wishing you all the best too as I know none of us want to be on this page xxx