Keytruda lung cancer non small cell

Hello

I am 53 and as your mum have stage4 non-operable nsclc. In November I started on chemo, paclitaxel and carboplatin and the same immunotherapy Keytruda. For 4 doses. This helped shrink things and I have continued on keytruda every 3 weeks. I had some neuropathy on the chemo. But now just being on the immunotherapy everything is fine. I'm back at work and suffer from no side effects. So far so good. And long may it stay that way. Everyone is different and responds differently. I hope things go well with your mum.

Holls

Hiya Holls,

thank you for stopping by and sharing this with me I am so glad this is going well for you,- returning. Back to work must be the best , i kno we all moan about getting up in the morning, but having normality bk is definitely a positive thing, 

xxx my mum does not want the drug trial they offered her , I said she will be fine with with the SPECIAL K ️ 

xx

Hello! I’m so glad I found your post. My mum 74 was diagnosed with  stage 4 nsclc - a 2.8 cm tumor in the right lung with some affected lymph nodes and nodules to both adrenal glands - she’s finally seen an oncologist today who has recommended immunotherapy Keytruda once every 3 weeks as a pallative option. It’s been so difficult to find stories with lung cancer / adrenal (unless I’m looking in the wrong places)

Hiya MMMW, 

firstly I am so so sorry that your mum has been diagnosed with this , I know how frightened you probably are, 

 mum is coming up to 2 years with this treatment , she also had chemo , and the last year immunotherapy only,  cancer in adrenal gland shrunk - cancer in lung shrunk - cancer in rib cage. Gone - All stable ,  this is definitely a miracle drug, and I am glad your mum has the  option  to try this treatment,  you do have your bad days , and good days like any treatment out there.   My mum is the same every 21 days, she is due a treatment tomo,  there are quite a few people on here who have positive stories about immunotherapy,   I hope you are ok , and I hope your mum does well on treatment, if there’s anything I can help or advice - just message me happy to help x

Thank you. What they say is so true, you feel so alone and lost - but connecting with similar stories brings such comfort, hope and knowledge - I feel so much better already knowing there have been success stories with keytruda and just hope and pray she is able to tolerate it  xx if you’ve any tips or info on dealing with immunotherapy and what to expect (although I know everyone is different) they’d be gratefully received

Hiya MMMW - I also have stage 4 NSCLC with mets to adrenal gland and have just started my journey on Keytruda. My tumors are much bigger though, 9.5cm on lung and approx 4 cm on adrenal gland. My PD-L1 scores were very high so they have started me straight on Keytruda (Pembro) every 6 weeks. I've had my first infusion about 2 weeks ago. So far I don't think I've had too many side effects (Have felt a little tired, a little rash/night sweats and a bit of a headache) but all perfectly easy to deal with. I figure things are working inside my body now, but it won't be  till June July unitl I have a new scan to see if there''s stoppage of growth or reduction in growth...finger crossed. sending lots of positive thoughts for your mum :)

Thank you tallbee. Wishing you all the love and luck in your own journey. Thanks for reaching out. Mum will be about two infusions behind you so it will be helpful to see how you both get on and any tips for handling any side effects along the way. I very much hope they continue to be minimal for you - mums oncologist said the majority of people tolerate keytruda well. Our only concern is mum has low functioning kidneys - they have remained stable for many years but under no illusions of the toll immunotherapy with take on them. We just pray they hold out for her x 

Hi just checking in to ask how you are doing? I've been thinking about you and am so grateful you reached out to my message & definitely put me at ease in readiness for Mum starting her immunotherapy. Mum had her first infusion of keytruda last week - we understand it's a smaller dose every 3 weeks - the good news is she experienced v similar side effects to you which were less than she'd been dreading I think - and the most amazing thing is after months of feeling so weak and poorly (dreading the side effects of the keytruda making this worse as some report) after three days of bed rest following the infusion with a bad head sickness and no appetite - she woke on day 4 and felt "better" - we don't believe it's a miracle cure or anything but clinging to the small win - she felt able to eat and actually "fancied" something - just felt like - whatever comes next we got a good few days out of this round. I hope you're doing ok - sending much love and good wishes to you :) 

Hello I'm just reaching out to thank you for your positive story before my mum started treated. She had her first infusion last week and after a few days of feeling tired and sick/headache - has now seemed to perk up for the first time in months and her appetite increased :) three days after infusion she said she could "murder a croissant" which, given eating has been a huge challenge for months and she's probably not had a croissant in 10 years made us all laugh :) whether it's a lucky first infusion, placebo effects or whatever we are just so happy she's been able to enjoy a "good" few days - after months of feeling too ill to enjoy anything. I hope your mum is doing well. Sending lots of good wishes. I'm sorry I'm still trying to figure out this site and didn't know how best to send my thanks. Thank you again for your kindness X 

I'm well thxs :) Am so glad your Mum's side effects weren't to0 bad and brilliant that she's feeling better :) I've been well since the first treatment and I have my 2nd dose this Friday so am a bit nervous about that. I had a chronic cough since January (it's what started my lung cancer diagnosis) and that has completely gone - I'm cautiously optimistic that things are working... I hope your mum continues to do really well and will send her lots of positive thoughts :)