Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Keytruda/ Nivolumab

Gem92
Posted by

Hi everyone

My dad was diagnosed with stage 3b squamous NSCLC in May of last year. Had 4 cycles of cisplatin/ gemcitabine and then radiotherapy as an inpatient for 12 days (3 times per day). 


After initial scans sounding positive and showing shrinkage it appears that the primary tumour has grown by a couple of mm and lymph node(s) have shown growth too. Oncologist has now suggested immunotherapy as second like of treatment. Initial biopsies will be tested for PDL-1 with the hope of dad having Keytruda but if they are not positive for this it sounds as though he may have Nivolumab.


I've used the search function on here and been reading people's experiences with these but just wondered if anyone can advise whether one works better than the other? Onc has said Keytruda is first choice.


Have people experienced a lot of side effects with either of these? Dad has been warned he will feel terrible for first 6 weeks or so with immuno.


Has immuno ever been known to put cancer into remission? And has anyone ever had it for longer than 2 years? I know both drugs are still relatively new so these answers might not be known yet. Both my sister and I are only in our twenties and dad's not 60 yet so we are hopeful for something which will give us many more years!


Dad's cough seems to have gotten worse even since his last scan so I am hoping he can get started on immuno asap to avoid any further growth/ spread and am hoping the immuno will ease the cough too, as the constant coughing coupled with the scan results is making dad feel very low at the minute.


I've posted on the Inspire US forum and read some really amazing stories about both drugs but would be really grateful if anyone could share their experiences of immuno on the NHS.


Thank you so much.

 ellie68
Posted by

Hi Gem

Sorry to hear about your Dad it can be a hard journey.

 I had chemo and then was offered Keytruda i did test positive and i was started on it.

I go for my 22 infusion on Monday and i ave to say for me it is so must easier than chemo.

Do not get me wrong have had some side effects but nothing that was to much to handle.

Dry Skin, Terrible Itching, couple weeks swallowing problems,Fatigue sore mouth.

So far i have had good results and tumors cannot be seen on CT Scan.

As far as i am aware it does stop when you have had the two years, as they reckon your own immune system should have kicked in and be able to recognize the cancer..

When i got DX  in Feb 2016 this was even available it was not approved till Dec2016, so it shows us new treatments coming out all the time.

Please keep us updated on your dad.

Take Care Ellie xx

You  Never Walk A Lone. 

Gem92
Posted by

Thank you Ellie for your kind words.

I'm glad to hear Keytruda is working for you and long may it continue! If you don't mind me asking what stage were you when you were diagnosed? Dad's primary was lll and satellite nodule in the ull but it's those pesky lymph nodes which have been the problem (mediastinal involvement when diagnosed)


Whilst this is a rubbish situation I do feel lucky that dad may be able to have one of these new treatments and the doctor did say to him that 2 years ago this treatment wouldn't have been available - who's to say what else may be available in another 2 years time too! 


It's really horrible to hear the doctors talking about extending dad's life still can't get my head around that and keep thinking surely at his age there must be more they can do but I know cancer affects people much younger than my dad. When he was first diagnosed it didn't cross my mind for one second the cancer would be 'inoperable' so when we heard that I was devastated - I just imagined they would take it out and we would get on with our lives. Nothing could have prepared us for this journey - as I'm sure is the same for everyone effected by this horrible disease!


Anyway, I'm sorry for rambling and thank you once again 


xx

 ellie68
Posted by

Hi Gem

I was T4N1

I hope your dad test's positive for immunotherapy, it has had real good results, though sorry to say not in all cases.

We have to trust our Oncologist and go with what they suggest we have no choice.

I am older than your Dad and i have coped well. Please fill free to ask anything you may wish to know.

Take Care Ellie xx

You Never Walk A Lone 

mummyb
Posted by

Hi gem 

I was diagnosed with stage 4 back in 2013.  I went down the chemo and radiotherapy route.  I had a couple of hiccups after finishing the chemo/radiation but was stable until December 2016 when it started growing again. I’ve been on keytruda since then.  I’m not sure if I’ve had 22 or 23 off hand but it has been really good for me.  I was scanned after my third infusion and both tumours had shrunk.  They seem to have remained stable since then.


I’ve never t really had any side effects except for an itchy rash on my face, which comes and goes.  I do get prescribed cream for it if it starts to irritate me but mostly I just keep it well moisturised.


Tiredness is something else I suffer with, but whether this is a side effect or the cancer or just my lifestyle (2 teenage daughters) I’m not sure. Probably a combination of it all, including the roller coaster worry that comes with terminal cancer.


I hope your dad gets on his treatment soon.


Take care.x

Seafarerswife
Posted by

Hi Gem,

My husband has stage 4 squamous nsclc and was one of the first people to be treated with Nivolumab in the UK, and with amazing results. He was on it for just over 2 years and had no side effects for most of that time. He eventually developed pneumonitis so the Nivolumab was stopped, but so far things have remained stable. There is more detail on his story on my profile. Best wishes to you and your dad. I hope he gets started on one of the immunotherapies soon. 

72Pembro
Posted by

Hi.

I have stage 4 squamous in my lung Stage 4 also liver metastasis.

I was diagnosed in November 2015 and given 6 months.

I had 2 lots of chemo which did not help. The last lot made my lung collaspe and i had sepsis. However i dont give up easy and made it through.

After a 3 months i was offered a 2 year trial on pembro.  I started on it in June 2016. I was compatible after the initial biopsy. I am now almost up for time now and have treatment number 34 next week. I may have one more after that.

Everything has stayed stable with no spread at all .  I have no bad side effects sometimes a little tired and a dry mouth now and then , nothing really for what it does However i am now trying to find out what happens if after i stop treatment and it starts to grow they have told me i will not be allowed on it again.

I am trying to find out anything i can to see what i can do if i need to. So would be grateful if anyone has a similar experience.

I hope you Dad will be ok. Pembro def a plus for me

Good luck with everything i hope it all goes well for you

Mick

Gem92
Posted by

Hi Mick

Thanks for your reply. It’s great to hear Pembro has worked well for you. If you don’t mind me asking did you have lymph node involvement in the lungs? This seems to have been the issue with dad main tumour is stable apparently.


Found out today dad will definitely be having Pembro rather than nivolumab and will start treatment Tuesday. I showed him your post and it made him feel more positive so thank you.


I hope someone can give you some advice on treatment after Pembro. Hopefully that will have done the trick and your body will continue fighting the cancer after the treatment! 


All the best and please let us know how you get on.



Gem92
Posted by

Hi Nadine

I’m so sorry I never replied I never saw a notification you’d responded.


I’m glad nivolumab worked so well for your husband - How is he at the moment?


We found out today dad will have pembrolizumab not nivolumab but I hope it has good results too


Gem 

72Pembro
Posted by

Hi ,

They thought i had lymph nodes but after i was tested it showed i didnt. 

Wish your Dad all the best from me. Its much better than any chemo. I asked for a scan after every 3 or 4 treatments to monitor. I hope all goes good for you guys

If i get any news i will let you know

Mick

Seafarerswife
Posted by

Hi Gem,

His lung cancer is still stable and he’s been off the Nivolumab since January. So that’s all good. Unfortunately he now has a new bladder cancer (a new primary-not mets) and unfortunately a very aggressive type so it’s looking like he will have to have his bladder removed. Evidently this cancer is also mainly caused by smoking, so with hindsight the cigarettes really were a bad lifestyle choice for him.Just when you think you are out of the woods......

Good luck to your dad- the immunotherapies do seem to work so much better than the traditional Chemo and Simon Is proof that it’s possible to survive even Stage 4 lung cancer.