So My Mum had her appointment today. It was horrible because I knew something was up when we were put in a room and the doctor attended with the nurse. He has basically said that Mum's tumour in the upper left has grown but there is also more cancer in the chest area. This means the treatment - immunotherapy/chemo is not working. He talked to us and it came across as very negative even though he was lovely. He was not at all optimistic about second line treatment helping mum but said he would try it. He kept saying that we would have to have a conversation about whether to continue treatment if things continued as they are now and more words to that effect. It really felt like he was basically saying, mum's life was very limited.
At the end it was agreed that mum is going to have 5 sessions of radiotherapy on the main tumour to help shrink it and help with the breathlessness and hoarse voice. He then talked about a chemo drug called Docetaxel. I asked him about Nintedanib combined with Docetaxel and he said that he didn't think it would add any benefits for mum. I just don't understand why he is so pessimistic about it helping.
Mum is still determined that she will be here for a few years yet and happy to go for all the treatment they can throw at her.
I just feel so very scared and want to hang on to any thread of hope I can. Her cancer is still confined to the chest which I thought was a positive, but clearly not. I am also feeling angry that they continued with the same treatment for another 3 rounds (3 months) despite the last scan showing marginal growth. To my mind this should have meant a new treatment plan. Why continue with something if it's not helping?
Sorry for the long post. I am all over the place right now.
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flatterycat
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Dear flatterycat, so sorry to read your post. I can’t really offer any advice just to say it may be worth asking to speak to another doctor. It’s something I regret not pushing harder for when my husband was diagnosed with secondary cancer. My thoughts are with you at this difficult time. You sound so supportive of your Mum & clearly love her very much & want to do your best for her.
Sending a big hug. Stay strong & be kind to yourself.
Hi , the outcome of this is what I’m exactly expecting with my mums meeting on Monday of which I will inform you of, it’s just soo bloody hard isn’t it Cas it feels like this is the last bit of hope and that’s if the treatment works and the lm ok worried sick about the side affects as mums been so upbeat and still out shopping with her a few times a week as you just wouldn’t guess but then I’m soo scared that she will go to being weak and poorly 🥲🥲🥲 hope your ok after your mums meeting, our situations are soo similar it’s bizarre! X good luck to your mum and please keep us updated xxxxxx
Sure it’s going to be very similar but thank you very much xx if your mum would like anyone to speak to with regards to off loading and sharing symptoms etc we would be happy to share numbers xxxxx
Nor neither is my mum , very private but I also think that’s because she doesn’t want o off load to us and burden is with her worry and troubles so sometimes it’s nice to be able to talk to someone going through the same thing isn’t it xx
Hello. Thanks for your reply. Did your consultant offer it straight away as part of your next treatment plan, or was it something you brought up? I was surprised that my mum’s consultant didn’t seem to see it as something that would help much.
Good that he’s still actively pursuing treatment for you. Do you have any symptoms caused by the cancer yet? My mum’s recently developed hoarseness and slight breathlessness but is still very active.
Sorry to read of your mum's and your experience at consultation. Several treatments may not show immediate response but the body takes time to respond - chopping and changing every time there isn't a response probably wouldn't help - I guess this is the roundabout way of what the oncologist is saying - Several treatments are approved for a certain amount of cycles so stopping them might mean any benefit is less - in the same way we have to have an entire course of antibiotics or it's possible infection can return/worsen. Sadly lung cancer is far more complex than anyone imagined - once they started researching it in great detail, it's become apparent that there are way more variable factors that impact treatments... if they've agreed to more treatment (radiotherapy in this case), it doesn't mean it's the end even if the way the appointment went may have led you to that conclusion... The bit about raising the situation that may arise if treatments stop working is their clumsy way of preparing people that not everybody responds to treatments in the same way. Having a nurse present is the required standard for the national optimum lung pathway so that a) the nurse can then advocate for the patient within the multidisciplinary meeting discussions in future, b) the nurse may be able to explain in more detail/plainer English than oncologists tend to use and c) start the relationship between nurse and patient/relatives that is likely to be the one that the patient/family may contact more frequently between appointments. Oncologists have to balance what they know about treatment side/late effects with the general health/response so far by the patients. It can seem that if they're not throwing everything at it including the kitchen sink is less than you'd like but in many instances treatment effects can impact quality of life without much gain for some. Non small cell lung cancer in particular is much more personalised approach than in years gone by which means patients may get different treatments based on the biological characteristics of their tumour/genome/stage and performance status than another person. This is usually a combination of clinical judgement by the medic and discussion with the patient. Hope she responds to the radiotherapy.
BTW it's natural to feel angry and cheated with life, medics and the situation that your mum's life isn't working out how you might have expected - how's she feeling about it all? Make sure you get some support for you too - Roy Castle lung cancer foundation and Macmillan nurse led helplines are available for anyone affected by cancer at any stage - not just patients... good luck to you both.
Thanks JanetteTo be honest, the consultant is lovely and kept saying that every single patient is important to them. He said that mum is formidable and he was really impressed with her attitude and energy. I did think about a second opinion but he’s quite a well-known and forward thinking oncologist, so I think we are probably getting the right treatment and care.
Despite my mum being 74, she’s always looked/seemed much younger and I think that’s added to my shock because it’s been easy to forget that she’s that age. She’s still working (from home), walking, doing all the housework etc. The only thing that’s recently appeared is her hoarseness and slight breathlessness when talking for long periods. She’s struggled with fatigue, but that’s been since starting her treatment and it was always bad 4 days post treatment. Mum is still feeling really positive, despite understanding everything he said and is still hopeful of a few more years. I just want to believe that there’s a ‘possibility’ the second chemo may work - however small. I also feel confused that he was talking in this way despite there being no spread outside of the chest.
Anyway thank you so much for your support - it means a lot.
That sounds quite promising to me and I totally get where you're coming from about age - I still struggle to think of my own age never mind my parents! I was 52 when diagnosed 10 years ago. She sounds as if she's being positive come what may - don't give up on the possibility of her coping with the treatments and it making a difference. I agree with your stance too - if it's still within the chest, that should give options... and new treatments being trialled and approved all the time... look after yourselves. x
Sorry to hear about your Mum and how difficult this has and still is for you all.
There have been some wonderful replies and of what JanetteR57 has said there is not much to add. It is good your Mum is keeping well which is encouraging.
If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200
Hi, my mum went for her meeting with the lung cancer dr today, they have advised her to speak with the trials team within Christie’s cancer hospital itself to mix a different immunotherapy with other drugs to see if they can find a trial drug to work better, if these trials are not successful then it’s 4-6 cycles of chemotherapy and then that will be the final plan it looks like and palliative care so fingers crossed something in these new trials work for her xxx not everyone meets the criteria for immunotherapy etc so I don’t know about other peoples options xx hope you’re all ok that side xx that was an emotionally draining day to say the least! Xx
Really pleased to hear that they are suggesting a trial. Sadly my mum’s consultant didn’t think it would have any benefit to take part it one. Has your mum had positive PDL1 expression?
Hi yes if this is to do with the protein then yes just x first scan showed slight reduction of tumour then next two scans shown slight growth on keytruda immunotherapy I think it’s called so she has to have a biopsy of the tumour taken and is now under the clinical trial team xx
Ah I see. My mum also had a reduction on first scan, then marginal growth until this third scan showing more growth. My mums PDL1 was less than 1%, so it was always going to be that the chances of immunotherapy working would be less. Hopefully with your mum’s positive results, she will respond well to a different immunotherapy. X
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