Lung cancer and Keytruda

[KipperKate]

I was diagnosed with adenicarcinoma Stage 4, T1B, N3, M1B in January 2023 and offered Pembrolizumab (Keytruda) having a PD-LI expression of 50%. I have had 4 6-weekly cycles so far , with a CT scan after the first 2 sessions and I am due to have another in a couple of weeks - before I have cycle 5. My first scan was showing progression, which the oncologist thought was probably pseudo progression, however, I am concerned about my next scan. I am feeling quite well and have no side effects other than tiredness, but my cough has not seemed to have eased at all. It has never been severe, but bothers me in the mornings when I get up, and seems to returns sometimes when I change position from standing to sitting, for example. Is this normal in my situation, or should I, if the Keytruda is effective, be feeling that my symptoms, such as they are, are subsiding? I know that I am impatient and that I do not have long to wait, but I hate the uncertainty. I would welcome any advice about how others have fared.

[sassassas]

hi KipperKate

I’m sorry to read about your understandable worries. Obviously none of us are doctors on here, but I would take comfort in a few things you’ve written - your high pdl1 status, the fact that your oncologist thought it was pseudo progression and the fact that you are feeling well. If it’s about 6 months since diagnosis and you’re feeling well, that feels very positive.

I read some research a while ago about the time it takes for immunotherapy to take effect and it is quite variable, sometimes many months.

My husband had chemo initially alongside his immuno and I think it was the chemo that kicked it back quickly, with the immuno coming in later to control it.

Best wishes and take care x

[KipperKate in reply to sassassas]

Thanks for your reply. I know that I should be concentrating on the positives, but I am afraid to expect too much, I suppose. It is good to hear from others who are experiencing the same journey. I hope your husband is continuing to do well.

[sassassas in reply to KipperKate]

I know! Its so hard not to expect the worst. I hope you can take some comfort from the various people on this forum who are benefitting from the many new drugs & living well with their cancer. My husband is 2 and a 1/2 years on from a pretty grim diagnosis (stage 4 NSCLC with extensive bone mets and lymph involvement) and living his 'normal' life - working, being a dad to teenagers, holidays, sport etc. Scan results don't get any easier though!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi KipperKate

Welcome to the forum and sorry to hear you have lung cancer. The most effective way to measure if you re having a good response with the immunotherapy is a CT scan, rather than an improvement in symptoms.

The Pseudo Progression, as you may know, is the initial appearance of the cancer getting worse, when actually it shows shrinkage in the follow up scans.

It is encouraging to hear that you are keeping well, despite your cough, which you have probably already discussed this with your oncology team.

This link is to our booklet on Immunotherapy: roycastle.org/app/uploads/2...

It is understandable wanting to see results and an improvement in symptoms, and everyone is different in their response and reaction. Thankfully the Immunotherapy is licensed for use for 2 years and has been such an advancement in lung cancer treatment for many.

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

You are welcome to contact us if you would like to discuss anything, our ask the nurse helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

Kind regards

The Roy Castle Support Team

[KipperKate in reply to RoyCastleHelpline]

Thanks for your reply. I have a number of your booklets, including the one on Immunotherapy, much thumbed, and have found them very helpful and encouraging. My husband has been wonderfully supportive and that is a huge bonus, but there are concerns and worries which I tend to keep to myself and so I may make use of your helpline. It’s good to know that the option is there. I may well be in touch.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi KipperKate

It is good to hear that the booklets have been helpful for you. You are welcome anytime to make use of our ask the nurse services, or any of our support services, which you can find detailed below:

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

We offer a one off grant of up to £150 for anyone with primary lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

To qualify for the patient grant, the lung cancer has to be a primary and it is means tested.

Our contact details are 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, our ask the nurse email is [e-mail]

Kind regards

The Roy Castle Support Team