I've been reading posts on here for a week or two, since my mum was diagnosed with terminal non-small cell adenocarcinoma (both lungs and 2 spinal mets T5 and T9 - we have been told stage 3 as the mets are quite close to the primary) about 3 weeks ago.
All the posts are so compassionately and empathetically written, it is reassuring and comforting to know others are going through the same emotions as me. Thank you all.
My mum has been offered pemetrexid and cisplatin as palliative chemo and the oncologist said textbook prognosis is 6 months if left untreated and if she has chemo and the cancer responds it may give her another 3 months on top of that.
My mum has performance status 0, mild hypertension controlled with a blood pressure tablet and no other conditions. She is very scared about the prospect of chemo and prolonging the inevitable and at the moment leaning towards not having any chemo.
She is terrified of being in pain and also side effects from medication.
I wondered whether anybody had experience of these drugs - I'm a pharmacist so have read up on them a fair bit but nothing substitutes personal experience (although I know everyone is different). Also, whether anybody had experienced, or been close to somebody, who struggled to make a decision between having palliative chemo or not.
Thank you to anyone who has read all of this - I hadn't intended on such a long post, and also to anybody who takes the time to reply.
Esme
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Esme85
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Hello. Sorry to read what you are going through, your story situation is almost identical to mine with my father. Although everyone is different, he had his first treatment with those same drugs just over a week ago and has done fantastically well. He has been tired and fed up and felt quite poorly for a couple of days but nowhere near as bad as we had all feared. He is up and about and has been able to "potter" and go out for short times although he does get more easily tired.His worse days were probably 4 and 5. The chemo unit was incredibly proactive when he needed other meds to manage some side effects and there is no need to suffer with anything in silence as there are medications that can help - although I do think he gets fed up having to take so much medication ! I hope this is helpful, I know what you are going through and how hard the situation is. I have been appalled by the lack of professional support and have found these forums incredibly comforting and informative. X
So sorry about your poor mum. My mum in law had the same she had 4 sessions she did have some bad days and symptoms where hair loss, a metallic taste with everything she ate, fatigue and others 😞she is only 59 she coped well. My heart feels your pain I'm thinking of you and sending hugs. How old is your mum?
My husband has just finished his 4th cycle on these drugs. We have had some down days and the tiredness is all consuming, but as they wear off I can see he is getting stronger. Side affects 1st cycle, tiredness, feeling spaced out, feeling a bit deptessed because he needed to sleep so much. 2nd cycle very down breathless at times, lack of appetite, nausea, wasn't sure he wanted to continue. Discussed this with oncologist who gave him more anti sickness meds and steroids for the appetite loss, 3rd cycle not too bad but being sick, now getting over 4th cycle, nausea worse and no appetite despite more steroids, but we know he will pick up soon. Scan next week, we know this is palliative but I go to a cancr support group and am hearing about people who live with stage 4 on maintenance chemo. I know this might not be for him but there is a ray of hope out there, everyone responds differently to chemo, the help line at the hospital is excellent. If the anti sickness drugs arn't working ask for ones that do, however constipation is a side affect of these. Good luck and value the good days.
Has your mum been tested for any mutations. If she has any there are targeted drugs which are very effective.
I was stage four 2years ago. I had cisplatin and pemetrexed and it really knocked the tumour back. Unfortunately I didn't have any mutation which were treatable at the time.
The main ones are egfr and alk
Love to your mum. It's very frightening at first but you will find strength x
Hi
My husband was given 6 months to 2 years when he was 1st diagnosed and that was over 3 years ago. Your mother is being quoted statistics, which are not up to date. There has been great improvements in treating lung cancer. My husband was stage three but due to a brain met is now stage 4. He has been offered immunotherapy as a second line of treatment. No one can know how your mother will respond to treatment. Alimta with cisplatin can cause different side effects in different people. My husband found days 2 and 3 were worse for him but after those days, he was fine. Your mother is being offered gold standard treatment for adenocarcinoma. Has she found out if she has any of the mutations, EFGR, ALK, ROS 1. Did you see the news about having your gemone sequenced which would offer treatment best suited your genomic profile. Good luck with treatment if your mother changes. If she has any pain it should be managed.
I would recommend joining Inspire. There is supportive community, a lot of Americans but you find out about treatments and side effects.
Hi to everyone, I'm overwhelmed by all these lovely replies and can't thank you all enough for sharing your experiences and advice with me.
My mum has been tested for mutations and didn't have any so immunotherapy or targeted therapies were not an option.
Interesting you mention the genome testing - I heard about it on the news just the other day and wondered whether it would be possible / be applicable to my mum. Does anybody know where to go for further information about this? The news mentioned it being available in the next 5 years but would be happy to pay for it if it would be any use.
Thank you again for providing a bit of hope with the prognosis - I felt that they had written my mum off before they even gave her the biopsy results, and also felt that the statistics were outdated. I just hope my mum can take some courage from your messages and make a decision that is right for her.
Esme, sorry to hear about your mum. As others have said, there are many different options now and much of the information on the internet is outdated. I attend many lung cancer conferences where the research and studies are discussed and there are some promising findings. Your mum will have mutations in the tumour but maybe not the obvious ones for which there are therapies such as EGFT and ALK although PDL1 and Ros1 are sometimes tested for trials. Are you in the UK? There is a CRUK funded trial open at many centres called Stratified Medicine Programme/TracerX which tests for other genomic markers so worth asking her oncologist if this is feasible for her. Dame Sally Davies comments about having genomic testing for the whole population is quite a way off - but the SMP Tracer X lung cancer studies have already seen improvements in the way pathology samples are taken and their use (also working with the 100 genome project). I've met many patients who were given just months to live even with stage iv who lived years and received treatments (not curative) but helped sustain/maintain quality of life. everyone's different but it's very promising that there now sufficient lung cancer patients surviving in numbers for larger trials to take place (which wouldn't have been the case even 7 years ago). Radiotherapy is also changing and combinations of radiotherapy and chemotherapy have changed treatment regimes as well as less invasive types of surgery so I'd urge her/you not to give up. There are some up to date booklets/information on Roy Castle Lung cancer website as well as European Lung foundation website that are trusted and have been verified by clinicians so these may be helpful. good luck.
Sorry to hear about your Mum's diagnosis, it is encouraging to receive so many kind and informative replies.
Genome testing may assist in diagnosis and what drugs the individual would best respond to, that also depends on treatment options being available for these mutations that are present. I have placed the news link below and one from cancer research UK.
With lung cancer, the treatment options may be limited with these mutations. At present we have treatment options for only a few mutations; i.e EGFR, Pd-L1 , and ALK; trials are ongoing for mutations such as KRAS and ROS1. Hence testing may not be of benefit if your Mum has already tested negative for the mutations that can have treatment.
Has your Mum considered a clinical trial, I have placed a direct link below for you to review the current trials for NSCLC:
You are entitled to a second opinion, if you wish. This can be done either through the specialist or GP.
There is a charity called phg foundation (population health for Genomics) their link is: phgfoundation.org/file/10365/ - they provide information on the genome sequene testing, their telephone number is +44 (0)1223 740200
If you wish to discuss anything we have a free nurse led helpline number on 0800 358 7200
I was diagnosed as stage 3b in 2014 and was given a terminal diagnosis with cisplatin / pemetrexed as chemo. I had four cycles which I didn't find too bad at all. Like others mention there was tiredness and metallic taste but I normally felt fine a couple of days after each treatment. I had radical radiotherapy following the chemo and then became eligible for surgery. They removed the primary (which by this time was the only area still showing activity). Surgery was in summer 2015 and I have had clear scans since. Very different situation to the prognosis I was originally given.
I wish your mum all the best - I don't know much about genome testing but would be interested to find out more.
Keep positive and whilst everyone is different there is also no reason why your mum can't aim to beat the odds. I know it is so hard but do try to keep questioning and exploring options. We are all here to help if we can.
Some 15 months ago, I was offered cisplatin and permetrexid as palliative chemo for my nonetheless terminal diagnosis and with this chemo, my estimated survival was 12 to 15 months. With little hesitation, I declined this offer, preferring to approach my demise without the likely side-effects of this chemo. Some doctors quietly applauded my resolve. Shortly after that, I was told the biopsy that had been taken earlier showed my cancer had the EGFR mutation and this could respond positively to my being put on Gefitinib. I have for a year now been on one tablet of Gefitinib a day which has so far held the spread of the cancer back and with none of the side-effects I wanted to avoid from cisplatin. I am grateful for this and enjoy a reasonably normal life with only moderate side-effects.
Please find out if your mother's cancer would respond to Gefitinib or similar drugs. It may not be a "cure", but it has most definitely been worth it for me.
It looks like our comments were posted about the same time and crossed out there in the ether!
I'm sorry to read your mother tested negatively for mutations. I'd had my fingers crossed for it.
I was fascinated to read what Janey H had to say. Such a turn round in her prognosis ... brilliant, but she obviously had to go through the mill to get there. Respect! So is there some kind of category of "terminal, but then again maybe not"? It sounded so clear cut when my doctors told me. KBO, as Churchill said.
I feel that I have been very fortunate with the way things have gone for me. I remember having the conversation with the oncologist around whether it was worth having chemo or not. I felt so healthy at the time of diagnosis and it seemed that if I only had a limited time left then maybe living it feeling ill because of chemo didn't make sense. My oncologist understood the logic of the question but reassured me that I should be able to 'live a relatively normal life' on the drugs and luckily that was the case. The cancer actually didn't have too much response to the chemo so I only had four cycles instead of the anticipated six.
I was really fortunate that the radical radiotherapy to neck and chest left me with only the primary showing activity.... and even luckier to find a surgeon willing to operate after the amount of radiotherapy I had had. My situation seemed to change after each stage of treatment and it took me a long time to get my head around the fact we were now talking 'chances of recurrence' rather than 'chances of survival'.
Everyone has different experiences with cancer and responds differently and only the individual can make their treatment choices based on the facts before them at the time. I feel so incredibly lucky to have had two years clear and be feeling so well.
I do post to give others hope and show that sometimes there are exceptions to doctors predictions.
Also worth noting I showed no mutations at the time of diagnosis. However, following surgery they took another look at the tumour and I have the EGFR mutation. Asked why this didn't show in original biopsy and either because sample didn't get those cells or it mutated during the year of treatment prior to surgery. Guess it means it may be worth retesting occasionally rather than it being a one off test? Worth asking the clinical team at least xx
What has been proven is that sometimes the pathology sample is so small it doesn't capture all the potential mutations and that there may be different types in different parts of the tumour. That is now known and in the UK there has been training for all the pathology labs as with the 100,000 genome project and SMP/Tracer X using existing pathology samples, there isn't always sufficient to go round so they need to use samples sparingly. Also proven in some cancers is that the mutations can and do change after some treatments which is why when breast cancer patients had a recurrence, they rarely responded to the same treatment on the recurrence arm as the tumour had mutated differently so required different treatment. As genomics and biological targeted therapies (as well as immunotherapy) are being better understood all the time, I'd urge all to ask the questions not only about mutations but whether anything has changed in relation to the trials on offer for different mutations as pharmaceutical companies are developing new agents to target some of these. good luck.
Well done and wishing you continuing good luck. Would it be possible to know who the surgeon was, or at which hospital at least? Often finding the right person is crucial. Was he recommended or did you find him yourself? x marta
My surgeon was a lady called Miss Kornaszewska and I had the surgery at Heath Hospital in Cardiff. She was the surgeon on the clinical team I am under so that is how I found her. She did the lobectomy via keyhole surgery even after all the radiotherapy so I am very indebted to her and her skill as a surgeon.
My husband had 4 rounds of cisplatin and pemetrexed in starting in October last year, followed by maintenance chemo 3 weekly until 3 weeks ago ... He had a 25% reduction on his tumours (2 in his right lung, with spread into the pleura and lymph nodes) ... the side effects were hard on him, very tired, nausea, funny tasting mouth ... but we're nearly a year down the road now so for us it was worth it! We are back at hospital on Wednesday to discuss another trial and we'll go from there. We decided that we didn't want timescales and I'm glad as we just take each day as it is! We were really happy with the results of the chemo, as hard as it's been he's still really well in himself.
All i will say is your being quoted median statistics which basically means that point is when 50% of people will have died.
Mum had the combination and fared pretty well, she to is also on performance 0 and is still in great shape. Mum was diagnosed with stage 4 lung cancer with the dreaded leptomeningenial carcinomatosis. her survival was expected to be around 4-5 months, that was 6 months ago. We changed her diet. incorporated exercise, supplemented her, removed sugar and dairy and she is in fantastic shape - now on maintenance chemo and all she suffers with is tiredness which we are combating with regular rests. I asked her oncologist again for a prognosis a few days ago and he is now refusing to do stating my Mum is doing remarkably well and wont hazard a guess.
She goes for a run every morning and amazes me everyday. She has an excellent quality of life.
We are working very hard at keeping her alive, i have researched for 100's of hours, read survivor stories and encapsulated all the common things into her regime.
Her diagnosis was the worst day of my life, i will never forget the fear and horror. however, we turned it around and already we are defying the odds. who knows how long it will last but the tumour is shrinking still and the lepto is under control and she is having a great time.
We have created so many wonderful memories in the last 6 moths that wouldn't have been possible without chemo.
My advise, look for the survivor stories, read the postitivity - I know it doesn't work for all but it works for some, my Mum is testament to that - had she refused chemo she would probably already be dead but she is living life to the full.
I wish you and your Mum all the best in this journey.
My mother in law is on the same Chemo combination, we've had 2 rounds so far and as others have suggested tends to be around 3-4 days after they take a dip feeling tired and lose a bit of appetite. Saw her yesterday (Round 2 + 6 days) and looks great, energy to walk the grand kids to school and eating well.
Ignore the Prognoses Esme, take each day as it happens and as you see on here there is always hope and people that defy the statistics regardless of stage code.
Hello again everyone, and thank you all for each and every comment on my original message. Again, I've been completely overwhelmed by the positivity, honesty, detail and compassion each of you has shown me (and my mum), and I'm sorry I haven't replied to each individually.
I hope I in turn will be able to carry this on and share experiences with others as my family and I get further along from diagnosis.
My mum has decided to go ahead with chemo - starting next week - partly, I think, because of the 'opt out' way that appointments were booked for her (she would have had to actively cancel them), and partly because of the honest and personal replies on this message board - so I really can't thank you all enough. Reading real people's experiences (both the good and bad) is much more compelling than a list of side effects.
She has the pre-assessment on Monday and first chemo on Wednesday.
Wishing you and your families all the best today, and for every day x
hi Esme85 hope it all goes well next week for your mum and for the rest of you being with your mum, I had similar treatment after terminal diagnosis, I went vegan and take cbd oil and believed 100% I would beat it and 5 months later my cancer is dormant and has been for 5 months now, wishing you all the best for the future, believe and you will beat it 😊👍❤
Hello, we had palliative chemo and some gave more side effects than others it did though make my mum positive and I really believe that helped, we are 2 years on cancer has now stopped responding to treatment. My mum was stage 4 when we started chemo , pain controlled by morphine the nausea is the hard bit.
I am grateful for the extra time it has given us x my thoughts are with you
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