Can someone be brutually honest and offer advice about the side effects of this drug - my mum was diagnosed with breast cancer in January after hiding a lump for 18months. After scans, it's spread to bones and lung & diagnosis is stage 4. She has been offered this drug along with Denosumab (which is the injection into her belly), however the side effects in the fact sheets are pretty scary. She refused it last visit to the cancer hospital about 6weeks ago as would mean she would have to shield & I vowed to investigate on these forums how it would effect her and if the side effects were as bad as the read.
My primary concern is that her immune system will weaken and the side effects sound similar to some of covid - temperature, chest infections etc and id be scared that we will be constantly thinking she has that.
Can someone please let me know how they get on
Hi SianT and welcome to the online community
I'm very sorry to hear that your mum has been recently been diagnosed with breast cancer which has spread to her bones and lungs.
It's natural to worry about the side effects of drugs but it's important to remember that all side effects have to be listed but that doesn't necessarily mean your mum will get any of them. As everyone is different it's impossible to predict whether she will be one of the unlucky ones who gets lots of side effects or one of the lucky ones who sails through. Her team wouldn't recommend she has this treatment if they didn't think, based on what they know so far, her body could handle it. Also, if she does have a reaction the dosage, etc can be tweaked.
Could I recommend that you also join the secondary breast cancer group and post your question there as you'll then connect with others who have had this treatment and they can tell you about their experiences.
If you'd like to do this just click on the link I've created and then choose 'join this group' on the page that opens. You can then copy and paste your question from here into a new post there after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
When you have a minute, it would be really useful if you could pop something about your mum's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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I have been diagnosed with incurable cancer. It's 10 yars since I was treated for breast cancer. To my horror in April this year i was informed my breast cancer had returned and spread to my lungs and bones like your mum. I am being actively treated with Palbociclib to whic i have just started my 3rd cycle. I take it in conjunction with Letrazole. I have my bloods taken every 4 weeks to check. I have not had any of the listed side efects except the sweats.
I will be having the injection of Denosumab at my next appointment, I am aware of the side effects that can occur. The hardest problem was getting a dental check, it took my specialist nurse to contact my dentist to clarify the situation especially as I already had a broken tooth I was trying to get sorted. I have now had my dental treatment sorted and had a oncology review and informed I can now have the injections.
You didn't mention your mums age. I am 62 years of age and will accept any treatment offered to extend my life, considering I have 2 grandchildren I want to spend more time with.
I understand your concerns, I was devasated to be given my new diagnosis as I attended the appointment on my own due to the restrictions from coonavirus. I had no family suport at that appointment an told that surgery not an option. I felt like i'd been given a death sentence.
I have an added problem of muscular dystrophy and have been sheilding since lockdown began till 1st August when it has been paused. I am now excited as I am going to a neuromuscular centre in a small group outdoors.
I get loads of support from my local hospiice outpatient centre which is unfortunately clossed but zoom sessions are available and very useful. You may benefit from joining or requesting help as a carer from your local hospice.
The Macmillan team nurses are also very good sourse to discus concerns.
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