Is our last option worth trying - pemetrexed/cistplatin and denosumab😞 desperate for advice

[em16780]

Please help. My mum diagnosed with adenocarcinoma may 2015. Inoperable so had concurrent chemo /radiotherapy with cistplatin and vinorelbine. Lung tumour shrinking. March 2016, 2cm brain tumour, treated with stereotactic radiosurgery. Today, diagnosed with 2 new 'spots' in brain plus spread to vertebrae in neck. She is 59, otherwise very healthy, active. Given options of doing nothing, denosumab for bones or chemo (cistplatin again plus pemetrexed) and denosumab. Told may have 12 months with treatment or possibly longer as if responds can go on pemetrexed maintenance. Can anyone give me their experiences or advice.

[Mrscancer]

Hi em16780, I was diagnosed April 2015 stage 4 nscl I had 4rounds of cisplatian and pemetrexed, followed by pemetrexed maintenance which I am currently on. Doing really well, just had results from scan. good results, tumour on lung was reduced by the first 4 rounds and a year later the pemetrexed alone has reduced the tumour further, bone mets in 3 places no longer show up on ct scan. I was given 1 to 2 years and I still fine. I will be honest the cisplatian and pemetrexed together was really tough but I did it, however the pemetrexed alone is absolutely fine, I have hardly any side effects. I'm 48 and have a young son of 10 who keeps me very busy, I determined I'm not going anywhere for a long time. Good luck to your mother and the decision she makes. Christine xx

[em16780 in reply to Mrscancer]

Hi Christine, thank you so much for taking the time to reply. Your message has given me some hope. My mums regime would be the same as yours if she managed to get through it. She coped very well during her first chemo which included cisplatin. Main side effect was metallic taste with all food, nausea. My mums worried about quality of life, its difficult when you don't know how things will turn out. Other peoples experiences guide you a lot. I am 36, I have a 6 year old and 3 year old. My mum and children are like best friends. Breaks my heart looking at them. I'm very happy that its working for you and long may it continue, you sound like a mum to be very proud of, good luck for the future

Emx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello em1670,

sorry to hear about the spread in your mums condition, it is good to hear from others how they have responded to treatment, it can give you some idea on what to expect although each persons response to a treatment and side effects experienced can vary greatly. When given a choice of options it can be difficult to know which will be best, discuss with your mum and the wider family what her wishes are. If you have a lung cancer nurse specialist she may be able to advise you on the different treatments offered and what to expect from them.

Please feel free to call us on our helpline number 0333 323 7200 (option 2) if you want to talk or discuss anything, we are here to assist you in anyway that we can.

Kind regards Roy Castle Helpline