Immunotherapy starts on Friday...any tips/advice

Hello Elsie, I am sure there are people in here who have been or are being treated with keytruda, so hopefully they will be able to give you advice. Unfortunately I can't as I am being treated with a TKI

John

Im on a different chemo so can't really advise you, but hope all goes well for you Elsie x

Hi Elsie, I am being treated with Keytruda and will be having my third dose next week. I am receiving the treatment every 6 weeks and have had very minor side effects, aching, tiredness but  my life has carried on as normal. The diagnosis is a shock but try to be as positive as you possibly can. Good luck on Friday and sending all good wishes. Penny x

Thank you....you've made me feel better. I too will be having it every 6 weeks. It's great you're coping fine with it and let's hope we both have success. Xx

Hi Elsie

I have just had my review with my Oncologist and although I was meant to go onto a different immunotherapy drug called Durvalamab, I may not be able to. I have fluid in my lung and they are going to test it tomorrow to see if it is clear or has cancer cells in it. If clear, I can go back to the original plan, if cancerous cells are found in the fluid, it looks like I will go onto Keytruda. I haven't researched this one at all so depending on my results, we may be able to compare notes as we go through treatment. Good luck with your treatment and I hope it goes well. 

Hi...I too have fluid on my lung, a pleural effusion, and mine does have cancer cells in. I think that's why I'm straight on to keytruda. Such a scary and worrying time...I think all this must come as a massive shock to everyone as most seem to be stage 4 when they have a diagnosis. 

Please let me know how you get on..it'll be good to have someone to chat with on here. Good luck xxxx

Hi Elsie

I ended up with severe chest pain after my pleural effusion was drained and on Sunday ended up in hospital with a suspected infection. I just got out today (Thursday) after various doctors suggested different treatments whilst I was in, including a Thorascopy but that got cancelled at the last minute after an ultrasound showed very little fluid! I was on low level oxygen the whole time and thought I would have to stay on it at home, luckily, it was agreed I wouldn't need it. I really don't know why hospital doctors don't talk to the Oncologist and his team who know you best. I may have got home a lot sooner. 

Anyway, enough of the hospital waffle..(out of my system now lol) I have just had my fluid results back and my Oncologist tells me it is malignant so I will go onto Keytruda (Pembrolizumab) like you. I have PDL at 100% which is a positive marker but obviously now instead of being stage 3, I am now stage 4. Bit of a shock but knew it was a possibility. The Oncologist was so apologetic and broke the news gently, even telling me in hindsight he should have considered postponing the radiotherapy when he had when noticed a slight increase in fluid a few weeks in to treatment. In my mind, he had to make a call, unfortunately it didn't work out this time. 

He is giving me a week to get my strength back after my hospital stay and will call me next week with all the details with a view to me beginning treatment in 3 weeks from now. I have some research to do I think but if you have any tips or can share your plan with me it may help me too. My cancer type is NSCLC - adenocarcinoma - PDL 100% I have an upper left lobe lung collapse which blocks my airway on that side, hence the collapse.

Sorry for the Essay.

Sally

Hi thereso sorry you ended up in hospital...that must have been horrid. I have to drain my chest everyday ...my husband now does it for me but I control the flow rate as it hurts when I'm 'empty'. Im still draining 200 MLS a day so I don't think the talc procedure has worked. ️

We do sound like cancer twins!!

I'm pd-l1 80-90% and had my first treatment on Friday., I'm also left lung.

Treatment was fine and no adverse effects so far. I cried as soon as I got there and probably for the first hour or so I was there. Everyone was so kind and caring though and I suppose the staff are used to seeing people upset. 

Ive got a follow up appointment in 3 weeks with the oncologist and next treatment is in October. 

I suppose all we can do is try and live life as normally as possible in-between treatments.

Juat rest up and get your strength back and let's hope we both have amazing results with Keytruda.

Its a crappy time but it's early days and let's hope we get the miracle we are both hoping for. Please keep in touch as we're both on the same path and it's nice to have some company on this rubbish journey xxx

Hi Elsie

Yes it does sound like we are cancer twins! 

From what you say, you evidently had the thoracoscopy that I escaped (for now) They drained over 400ml but think most had been there for quite a while.. at the very least April when I had the pain of the lung collapsing back in April.

Sorry to hear you think the talc hasn't worked for you. The hospital doctor told me that due the collapse it was unlikely the talc would work. He gave the analogy of the outer lung lining being a box and the inner lining a balloon because of the collapse. There would be places the balloon wouldn't be able to reach thereby reducing the effectiveness of the talc. He did say that the ability to drain as and when needed was the best outcome. Who knows, I may end up having it later on too. Has your lung collapsed too?

 You say it is hurts when you are empty, maybe that was the pain I got on Sunday... I had woken up on my back lying almost flat, I am usually propped up on pillows. The centre of my chest felt like I had been head butted there. 

I have already been through Chemotherapy (once weekly) and concurrent Radiotherapy (daily) for 6.5 weeks as my original plan required this was first. At me first Chemo I cried a lot too. I think it was a mixture of relief at finally beginning treatment and worrying about how it might affect me. The staff there were also very supportive. You could read my blog if you like (link below) as the first few I did put in a lot of my feelings and a few tips also. 

Is your treatment every 6 weeks? How long are you there for each time? Chemo for me was most of the day as I had to had support drugs, saline and 2 different chemo drugs. I hear this is 30 minutes for the Keytruda/ Pembrolizumab but know nothing of any other drugs you may need. 

Luckily, I am feeling much better and just need to get onto my build up diet that I have created recently. I add ground nuts and seeds to all sorts of foods, select high fat content everything and lots of protein and colours of fruit and veg. I got it from the Macmillan leaflet. I also need to get back in gentle exercise too, far too much laying around in a hospital bed this week! 

Good luck with your journey and I agree, it's good to have company through this awful time we are faced with. It is really important to be positive which I have been all the way through but it can be hard at times. 

Keep the faith and live the life you love and love the life you live! It is precious.  

Hi there ...the treatment only lasted 30 mins but I was there all morning as they had to do bloods, ecg etc before they started. My treatment is every 6 weeks, with blood tests every 3 weeks. 

Ive got mixed feelings about my chest tube ..part of me obviously wishes the talc had worked but the other part of me thinks at least with the tube there, and daily drains, I have no breathlessness and feel fine. I'm currently trying to ensure I do at least 6000 steps a day too. 

I read your blog and love how positive you are ..I need to be more like you. I have good days and bad, but I'm sure we're all like that.

On a happier note, you have an African grey...I'm assumming he/she talks? My dad had one called billy....he was so funny and chatted like mad... He used to sit there and just chant "billy, billy, billy, billy buggar" 

Anyway...I hope you have a great day and feel much better soon xxxx