Immunotherapy problems

Hi Anon8

Welcome but sorry to see you have to be here.

I personally cant help but Train Spotter has his mum going through similar I think. Try searching through the threads for him. I dont know how to tag him. Good luck. I hope to go onto immunotherapy after my 6 rounds of chemoradiation so will follow your story with interest too. 

Take care. 

Sal60

Hi im

trainspotter 

Im so sorry you are going through this,

my mum is to on immunotherapy,  she has only had her second treatment this week,  she was poorly first treatment,  so they have adjusted the dosage, can you ask if this is something they can do? Call the oncologist and ask what the next plan is . 

I found calling Macmillan nurses and asking them was very informative, 

im sorry I can not give u more info but just remember your dad will not be the only one To go  through this and they will have a plan of action , 

let’s us kno how it goes please 

take care 

nicole xx

hello trainspotter, i’ve quick question for you if you don’t mind i was wondering what age your mother is. the reason why i ask is my mother has lung cancer also. she’s 78 i know quite old. she had a possible re-occurrence on her cancer, but the consultant seems to think she’s to frail for Immuno therapy. and has Basically sent her home. i was just wondering how you mom was getting on with her Immuno therapy treatment eg side effects etc. thanks Mark 

Hi Mark

I am sure train spotter will be along shortly to answer your question. I will be moving on to immunotherapy hopefully in august. The oncologist did tell me the fitter and better the lung function is before starting immunotherapy the better. I am 61 and usually fairly active although would describe myself as 'slow and steady'. I have been doing research and immunotherapy is cumulative so as you go through it, you can experience more side effects but not yet had that confirmed by Oncologist yet. Please speak to your medical team who should be able to explain fully your mums individual needs. At 78 she is doing well but I hope she finds the best treatment to suit her. 

Good luck. 

Sally

Hi mark,

I am so sorry to hear about your mum, this is such an awful disease,  my mum is 66,  she is having keytruda immunotherapy with a combination of 3 chemotherapy drugs at the same time, she had her second treatment June 23rd,  she is very tierd by day 3 after treatment, and for about a week she is tierd, but we don’t know if  that is the  immunotherapy or the chemo,  making her tierd , I was told the immunotherapy is more gentle on your body, and they can change the dosage at any time if it is to strong, my mum had biopsies and they put this immunotherapy on the biopsies and had really positive results, 

maybe this might be why they won’t give it to your mum. As it might mean a biopsie? If you don’t mind me asking is your mums lung cancer non small cell ?  And what treatments and how long has she been on them ?,

it maybe she has not got the mutation / bio markers?  In her cancer ,  but there are other drugs they can surely give her,  

it does not matter how old your mum is, she still your mum and all you want is the best care and treatment, it seems so sad they have sent her home,  please speak to the specialist,   When my mum had her chemo last week there was a 93 year old women who was haveing chemo, she walked in with a spring in her step , she has cancer in her lung and belly and was telling my mum she goes every month and she been doing this for 7 years so far,, so surely they can do this for your mum, 

please call the doctors, I hope your mum is ok and not experiencing any pains,

sending my love to your amazing mum. Xxxxx nicole x

Morning yes she had a biopsy before her radiation treatment which didn’t go too well, she ended up with a collapsed long & had to spend a few days in hospital. The doctor had said he wouldn’t like to put my mother through that again. But surely a pep scan would show up a  re-occurrence of the cancer. Yes she’s 78 & sleeps a few times during the day. But I just can’t except there’s no other help available, as it seems the cancer in confined to the one in the lung. Inconclusive is want he said, weather it was scar tissue or a return of the cancer. Would it be worth considering a second opinion ? I’m at my wits end with this. I’m the only one looking after her, as I live with her. As you know it’s very hard dealing with this alone. Thanks Mark 

I’m so sorry your dealing with this alone,  I think you should ask them to re scan your mum, I think you need to keep on at them,  I’m sorry your mums lung calapsed but it don’t mean it would happen again if she had radiotherapy again on the lung,  get on to the specialist and ask for her to be re scaned as there is some confusion and you want the best care for your mums,

my muMum ended up

in hospital after the first lot of chemo with infection they said it’s rare for this to happen, 

so it might be the same case when they gave your mum the radiotherapy,  and surely if it’s confined  into the lung then that’s easier to treat at this  stage, my mums cancer is in her left lung, and spotting on her adrenal gland so the cancer cells have floated about that’s why she has to have the chemo to kill any cancer cells that maybe hiding, 

please call the specialist / doctors today , x Please let me know. Xxxxx

Hi, just wanted to tell you all that my final immunotherapy treatment was April 2020.  After two years of treatment I was very nervous about it coming to an end.  However 14 months later I am feeling very well and my next scan is in August.  I hope people can get some encouragement from hearing this.  I was given 6 to 12 months to live in October 2017 (without treatment) so as you can imagine, I am very pleased to be able to share this with others.  My cancer could not be operated on, so immunotherapy was the only treatment offered to me.  I also had a tumour on my right kidney. Because my lung cancer was shrinking so well, I was lucky enough to be offered surgery to remove my right kidney, which I jumped at!! The biopsy was inconclusive as to whether it was the same cancer.  Anyway, I’m still here and happy to contribute in any way I can! Keep fighting everyone!

Thanks good luck for the future going forward 

Hi grandmar

I Love  this, it has made my day xxx  

thank you for sharing with us xx

lots of love nicole x