My Mum part 4

[Leccilats]

Hello

I have now found out the names of my mum’s treatment: chemotherapy drugs are carboplatin and pemetrexed, the immunotherapy is pebrolizumab.

This seems to be a ‘standard’ or ‘first line’ treatment for stage 3b LC. I was pinning my hopes on the fact that she had the type of cancer cells that would respond to immunotherapy, but from my reading it seems that it is a standard protocol for most. Have I got this right? Or does the fact she is having immunotherapy mean she has something in her cells that show she might respond positively to immunotherapy?

Many thanks for the wonderful support I have been getting on here

Sarah

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Leccilats

As you know all treatments are strictly based on evidence from research studies which must demonstrate their is a potential benefit for the individual.

There are standard protocols, guidance from the National Institute for Health and Care Excellence (NICE), which have a lung cancer pathway directing the recommended treatment. The lung cancer pathway can be found on this link:

pathways.nice.org.uk/pathwa...

This link explains the recommendation for the combination treatment that your Mum is on, which has been based on current data from an ongoing trial: nice.org.uk/guidance/ta557

Hope your Mum will be well on the therapy and if you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200.

Kind regards

The Roy Castle Support Team

[Leccilats in reply to RoyCastleHelpline]

Thank you for your reply.

Can you advise me on the difference between PD-1 below and above 50%?

Is this a question worth me knowing about my Mum’s LC?

Sarah

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Leccilats]

Dear Sarah

PD-1 attaches to the protein PD-L1, which I assume it is the PD-L1 in the percentage values query you have.

The PD-L1 are checkpoint proteins that normally detect abnormal cells and form part of the T- cells of the immune system, however cancer cells can trick these proteins not to react and hence the cancer multiplies and spreads.

In detecting biomarkers, the best predictor of the best outcome, measures the amount of staining of PD-L1 proteins which may be labelled as 50% or over or under 50% from biopsy tissue. The higher the percentage, the better the response from the immunotherapy.

You may find this link on Immunotherapies useful in explaining this from our website: roycastle.org/app/uploads/2...

If you are unsure what percentage your Mum has you can ask this from either the lung cancer nurse or specialist.

All the best

The Roy Castle Support Team

[JanetteR57]

Good that your mum is on combination therapy - pembrolizumab is an immunotherapy treatment and clinical trials have shown at the stage your mum's cancer is at, that a combination approach is most effective.

We don't have to understand all the science even if it sometimes feels that way.

The chemotherapy combination is a 'systemic anti cancer treatment' to blitz the cancer cells but will also affect other cells in your mum's body and the immunotherapy (pembro) is to trigger her own immune system to respond. Immunotherapy has only been added to this standard in recent years (dependent on PDL1 results) and as explained by RoyCastle helpline, this is the standard of care for this stage/type in the UK. NICE guidelines were only recently updated for lung cancer to take new trial results/treatments into consideration - previously only some patients had access to some of the treatments if taking part in clinical trials (which not all hospitals are part of).

Once results prove something is better than existing treatments and the cost effectiveness against NICE criteria calculated/negotiated with the pharma companies, these treatments are usually adopted into standard of care.

This is not some sort of inferior care - it is the best standard available based on her individual clinical results. hope this explains but you can always ask questions - especially if she has a lung cancer nurse - they are used to patients/relatives having questions after appointments. One question you can always ask is 'is there somebody I can contact after the appointment if I have any questions?' and get a telephone number from them. good luck.

[Leccilats in reply to JanetteR57]

Thank you for you help.

My Mum’s nurse has replied with this:

“PDL1 was less than 1%, ALK and ROS1 were negative as was EGFR. Without a strong expression of any of these markers, the way forward was with chemotherapy. That's not to say that immunotherapy can't be given in the future. Hope that's helpful.”

I’m confused by her comment that immunotherapy could be given in the future! She’s already receiving it. I feel upset about her PDL1 being less than 1%.

[JanetteR57 in reply to Leccilats]

don't be upset. at the time of my diagnosis the only targeted therapy was for EGFR and I tested negative for that but that was in Jan 2011. over the years there have been more targets with therapies in trial or standard care now so it's an evolving landscape all the time.

[Ina3 in reply to Leccilats]

My dads PDL1 was not strong either, it was weak positive but Keytruda did a great job.

[Leccilats in reply to Ina3]

Thank you. That gives me hope x

[Ina3]

Hi Sarah. My dad was diagnosed with NCSLC stage Iv 18 months ago and he did the same first line of treatment. He is PDL1 positive and thats why he has been taking pebrolizumab (keytruda) .He stopped chemo 7/8 months ago since he was doing so good and he stayed on Keytruda. This immuno has been doing a great job for him. No side effects, nothing. Unfortunately he has brain mets and recently we saw more mets showing up there. I wish we detected the disease earlier before it reaching the Brain , i know that with the treatments that they have now and with huge support from the groups like this, the disease can be beaten but brain mets complicates the situation a little bit but i still have a hope.

Good luck to you and your mom. Stay strong and positive. 🙏🏼

[Leccilats]

Thank you all so much for your help.

My mum’s nurse has said that she made an error in her email so that explains why it said she could have immunotherapy in the future.

I still don’t understand how she is able to have immunotherapy if her PDL1 was below 1%. Are they now giving immunotherapy whether they are positive or negative.

Sorry for all the questions

Sarah x

[JanetteR57]

Depends - is she on a clinical trial or standard care? some clinical trials compare immunotherapy in those who wouldn't normally be eligible with those who don't have it - I was part of a trial steering committee for PEPs2 - a trial for those PS (performance stage)2 patients who would ordinarily not be offered immunotherapy who were given pembrolizumab and most did better than the others. However for that group, it's not a standard of care. Always worth asking the clinicians dealing with the patients due to the specifics involved but I guess that's confused now with inaccurate information being given initially. hope you get some answers soon.

[Leccilats]

Hi Janette.

Mum isn’t part of any trial. We know that her PDL1 was “less than 1%” but she is still receiving the immunotherapy as well as the two chemo.

Maybe they decided to just give it a go if it’s had positive results in people who are PDL1 negative.

Sarah x