My mum (stage 4 NSCLC with mets to spine and ribcage, Diagnosed Jan 2024, started treatment March 2024) stopped immunotherapy as it's not working, she originally started on the usual cocktail of Pembro etc alongside it, which initially caused some shrinkage but she wasn't tolerating it very well so it was stopped and since there has been lots of progression and the main tumour has grown again, bigger than it was at diagnosis.
Her oncologist has suggested that her best/only option now is Docetaxel.
(I should say we are pending some new results from new biopsies this week, which he's taking in the hope there is also a targeted treatment for her, however there wasn't last time when she was newly diagnosed as she's KRAS 13 positive so I'm not hugely hopeful although I appreciate the effort on his part to explore all options - has anyone ever previously not been eligible for targeted treatments and then things have grown/mutated afresh and suddenly you are/have new options or mutations?)
Everything I read online about Docetaxel is quite scary and I was wondering if anyone had gone through this chemotherapy and had seen some positive changes/extension of life or whether you felt it was 'worth it'? At the moment although her cancer is advanced, mum is managing on Morphine and still has her hair, her dignity etc and is able to drive, eat, hasn't lost weight and we can still go for drives and do little things to cheer her up, we went on a little trip to a B&B last weekend and it really lifted her spirits.
I am scared that this chemotherapy will ruin her quality of life and it may only extend her life by a few months. I have two brothers and one of them is adamant that she shouldn't go through with it so I feel caught between a rock and a hard place. It is her decision but she just listens to what the doctors tell her and doesn't always think about the impact it will have on her.
Does anyone have any tips, stories or advice re: Docetaxel and also any info on targeted therapies being an option after previously not?
Thanks so much for reading, I really appreciate the advice and support.
Thank you,
L
Written by
DaughterofDiane
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Sorry to read about your Mum and how distressing and difficult this must be for you all.
Sometimes, there can be a different cancer cell mutation present and it is good that they are rechecking everything for your mum. As you know, everyone reacts and responds differently to treatment and I hope you hear form others in the forum who have experienced Docetaxel.
It may be a case of waiting to see how your mum reacts to the docetaxel and as you know, often things change in the cancer journey and she may do well on this.
You are right in that it is your Mums decision what treatment she has and that includes if she decides to stop the treatment at any point if she feels she cannot tolerate it.
It is a good question to ask the oncologist, what extension of life would there possibly be with or without treatment, and that may help your Mums decision, but that depends if your mum wants to ask that question or not.
It can be challenging when other loved ones have a different view on things and ultimately it goes back to the individual and their preference, you have done well by your mum in respecting her wishes. It is understandable that some people within a generation will not go against the doctors and as long as you are satisfied that your mum has been well informed and understands what is happening.
We run an online support group for carers and you can view and register for this through this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at ellen.knapp@roycastle.org
You are welcome to contact our ask the nurse service if you would like to discuss anything on 0800 258 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, or you can email us at lungcancerhelp@roycastle.org
My heart goes out to all of you. It is such difficult situation and even harder to make decisions about treatment.
I have stage IV NSCLC with brain metastases diagnosed in 2021. I have undergone surgery, radiotherapy and CyberKnife in combination with various combinations of chemotherapy and immunotherapy. Whilst this is a different presentation to your mums there are similarities in the treatment options.
For me the chemotherapy and immunotherapy caused significant side effects and did not appear to be reducing the tumours, although I did persevere for nearly 2 years my consultant felt that I should stop this treatment. My only option was to try Docetaxel. I was given all the relevant information and warned that the side effects could be extremely debilitating. I was very concerned about this and having weighed up the risks and benefits and discussing it at length with my consultant I decided to try one cycle and see how it went.
I was very surprised to find I had minimal side effects. To date I have had fourteen cycles of Docetaxel and the side effects have not got worse. So for the time being my disease is relatively under control.
I think that I have been very lucky that this line of treatment has helped with disease progression and has not massively impacted my quality of life. However, I do think that different treatments suit different people, a friend of mine was treated with Doxcetaxel and suffered so badly from the side effects she had to stop the treatment.
I hope this is of some help . I hope you can speak to your mum’s consultant about the risks and benefits of treatment with Doxcetaxel at this stage of your mums treatment. The most important thing for me was my quality of life.
Hey i am my heart goes out to your mum. My husband was diagnosed in April with Lung cancer metastic and stage 4 it's well scary went through with the usual chemo plus immunotherapy that seemed to have worked however in the midst of this my husband developed really bad headache and upon going through scans it showed he had tumour in the brain so they did radiotherapy of 5 sessions which was ok as he didn't develop any headaches or blurred vision or anything thankfully, than as we were about to continue with thw chemo plan something new developed which meant his spine and leg had tumours so they did an extensive radiotherapy on spine and stomach which made him proper sick he was hospitalised for a week and than since then he has weakened not eating properly not himself lost all his hair and beard which he was very proud of than the team decided to get him on paclitaxel which is the weekly treatment however i think its made him even worse after 4 cycles he has developed chest infection and has had blood transfusion. I feel devastated seeing him like this, he lost so much weight. His qualify of life i really think the chemo and radiotherapy jas been compromised. I really dont know what to do anymore. Whether i should just stop treatment and give him holistic medication and just live with what we have and buid him back up. Our firm believe is God and that he will make things better and just waiting on what the oncologist team have to say. I pray that it all works out for your mum. However my opinion is i wouldn't put your mum through the treatment as when I have done research on docitaxel it's awful. She will be compromised on her neurological and bone density. You do more research and see what's best for her. I hope I haven't dampened your morale on our situation but everybody deals with differently.
I was diagnosed in Oct 2022 and was given 3 rounds of Docetaxel in 3 weekly sessions, then again once a week for 5 weeks , combined with 25x radiotherapy. It was admittedly hell. (I’d compare it to a week long tequila hangover)
However it did reduce all 7 tumours, & I started on durvalumab, which , after 6 sessions I ended up in hospital due to pneumonitis & given corticoids instead (I’m still on them 18 months later) , & had no treatment until December , when I was hospitalized again, for a brand new tumour.
Have been trying to keep this under control since then , & when my breathing became much worse I was offered Docetaxel The nuclear option, or a phase 3 trial “targetted” chemo . You might want to enquire about it?
it’s unpleasant in that it’s in perpetuity every 2 weeks instead of 3, but without the nausea of docetaxel, but the tiredness and sweats are overwhelming.. My hair fell out on the 3rd cycle this weekend like Docetaxel. Maybe I’m sure it affects people differently? This trial seems to offer 30% reduction of tumour size in 55% of the sample study
No chemo is fun, but as I have no mutations for targetted either, it’s all we have, I’m afraid?
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