Pembroilzumab immunotherapy - help please

[Sharkey1234567]

Hello all, me again,

My mum has been diagnosed with locally advanced Adenocarcinoma in lungs, with pleural effusion and spread to local lymph nodes.

She has just been informed she will be given Pembroilzumab immunotherapy once every 21 days.

Also oncologist mentioned wants to start chemo also but immunotherapy only first - is immunotherapy done first and then chemo?

Can anyone share their experiences with this?

Side effects (she has said she wants to know to be ready for them).

Also the Oncologist has said she needs to make sure she doesn’t go out in large crowds or see anyone that is known to be I’ll as she will be high risk for catching infections etc…how does everyone manage this? Will there ever come a point she is able to see people? Do normal things?

Any info and help would be greatly appreciated I just want to have as much info and tips as possible to be able to support her.

Thank you in advance

[nlg1405]

Hi Sharkey1234567

My mum had chemo first when she was diagnosed with stage 4 lung cancer and unfortunately this didnt have much affect at all, however when she started the pembrolizumab trial her tumours shrunk by 80%. So from my experience I would say your mum is starting off on very good treatment. My mum didnt really go to lots of very crowded places regularly and wouldn't see friends if they were poorly obviously, but otherwise did everything she would normally do. She went on holiday, out for a meal etc. Making memories is so important, your mum doesnt want to stop doing that. She still needs friends, family and plenty of laughter to make this journey easier, not to be isolated and alone.

Wishing her all the best with this treatment x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI Sharkey1234567

So sorry to hear your Mum has lung cancer and how emotionally challenging this must be for you all.

This link will take you directly to our booklet on Immunotherapy: roycastle.org/app/uploads/2...

Everyone can respond differently to Pembrolizumab, for some, it can be tolerated well and if there are any side effects or new or worsening symptoms, it is best to report these early so it can be managed well.

This link from Cancer Research UK provides information on Pembrolizumab:cancerresearchuk.org/about-...

You may find this link from Macmillan support useful in how to avoid infection during cancer treatment: macmillan.org.uk/cancer-inf...

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...

Hope you continue to hear from others in the forum and if you would like to discuss anything, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Take good care of yourself also.

The Roy Castle Support Team

[sassassas]

Hi Sharkey1234567

My husband had chemo + immuno therapy together for the 1st 4 cycles, then dropped the chemo and now just has the immuno every three weeks - he's 18 months into his treatment. Sometimes immunotherapy is used after chemo, sometime before chemo and sometimes both together. You could ask your oncologist why he or she is recommending IO only 1st.

My husband has very few side effects from his immunotherapy. Only a little stiffness in his joints - he does lots of stretching and yoga, he doesn't need any drugs for this. Some people do have more side effects but generally these drugs are felt to be less severe.

I can't lie - chemo does tend to bring a fair few side effects. That said, no-one gets all the side effects that you'll read about. The worst thing for him was the constipation - we're not talking your average constipation here! We were unprepared for it and that's a shame because it could have been managed and he might have avoided some complications. I'd really recommend the Macmillan website which has some fantastic information about all the drugs when you know which drugs your mum will have.

In terms of managing infection, for my husband, he was only advised to be super careful when he was on chemo because of the effect on white blood cells (avoiding people with colds, covid obviously, foods that might cause infection like raw cheese and shellfish, washing hands, cleaning cuts well etc etc). Now, he doesn't have to take any special measures.

Hope that is helpful to you both and best wishes to you and your mum.

Sarah x x