Patient experience of Atezolizumab (T... - The Roy Castle Lu...

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Patient experience of Atezolizumab (Tecentriq)

NicF4 profile image
NicF4PartnerRoy Castle
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Atezolizumab (Tecentriq) will shortly be assessed by the Scottish Medicines Consortium (SMC) for use in NHSScotland, and we have been invited to provide a Patient Group Submission for the medicine.

We are therefore trying to gather some patient experience quotes. Maybe you have been taking this drug? Maybe it was an option but you have been put on a different treatment pathway? Maybe your family member or partner is taking it. Have you been taking it as Adjuvent treatment following resection?

If so please get in touch, no personal details are needed, but discussing it with you will help us put together the document on behalf of patients. Please either comment below or private message myself or lungcancerhelp. Alternatively you can phone the Roy Castle Ask the Nurse service on 0800 358 7200

You do not have to live in Scotland to comment, so please do get in touch.

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Seaspray298 profile image
Seaspray298

I live in the US so not sure you want to hear from me! Let me know if I can help. Had been on Tecentriq for over 1 year and went off treatment in March 2020 when Covid got so bad. I had been stable for quite some time. I started back on Tecentriq (had progression) early in March and having my 3rd treatment this week.

NicF4 profile image
NicF4PartnerRoy Castle in reply to Seaspray298

Thanks for replying, I will DM you some questions soon if that ok?

sassassas profile image
sassassas

Hi thereMy husband has Tecentriq and Avastin for NSCLC (stage 4) every 4 weeks. He's just over 1 year since diagnosis. It has worked brilliantly and is currently pretty much NED.

He'd be very happy to share his story with you.

Sarah

NicF4 profile image
NicF4PartnerRoy Castle in reply to sassassas

Thanks for replying so quickly, I will DM you soon with some questions if that is OK?

MacColl profile image
MacColl in reply to sassassas

So good to hear it worked so well - hope it does for me as my fist dose seems to have caused very few problems so far ...just more sleepy! Due my second 3 weekly dose of this Atezolizumab (Tecentriq) drug tomorrow - sensitive to drugs so on a reduced dose.

I had immunotherapy with Pembrolizumab in Autumn 2019 but it attacked my liver and then led to pneumonia.

Had chemotherapy in 2020 and then as it had spread to my brain, had Gamma Knife Surgery to brain tumour in another specialised unit some miles away followed by radiotherapy to lungs back at my local oncology centre. I then had another new drug, but it didn't agree, but after having a pericardial effusion followed by Covid, and recovered enough to begin the Atezolizumab 3 weeks ago.

Will report back as soon as I can, but due a second treatment for the fluid around my heart after the second Atezolizumab treatment this coming week.

sassassas profile image
sassassas in reply to MacColl

HI MacColl good to hear from you - really hope atezo is a good drug for you. It may be worth asking your oncologist about prescribing it with avastin - these 2 drugs work differently to each other in the way they target cancer cells, and recent trial data suggests they help eaxch other to work together in a very complimentary way.

There's also some emerging research looking at patients' gut health and how it can influence the effectiveness of immunotherapy drugs. My husband makes sure he eats a wide range of plant foods and lots of fibre. He eats beans on his treatment days!

Take care, Sarah x

MacColl profile image
MacColl in reply to sassassas

Thanks Sarah - had my second dose Thursday AM and as my breathing was getting worse, phoned the oncologists secretary after the nurse finished administering it and was admitted on Thursday evening. Had scans & X-ray Friday, and a doctor on nights came to tell me it wasn’t the fluid around the heart this time but a clot in one lung and another small one in my heart. Related to the radiotherapy/lung tumours though.Seemed like fairly decent ‘fixable’ news until the ward day consultant came and said how surprised she’d been at what it actually turned out to be …..then said she wasn’t sure they’d carry on with my new immunotherapy! No more than 28 days into the new treatment, and they usually wait up to 12 weeks before checking again. Surely too soon to be sure, and everyone is different.

For now I’m on oxygen and clot busting injections - still unable to walk more than a few steps without being unable to breathe and I had the ward sister send a sputum test to hospital lab this morning and was on antibiotics by lunch time. With luck I’ll be fit for home by Monday or Tuesday.

I’m a bit calmer now as the sister has just said to wait until I speak to my consultant when he’s back on Tuesday - think she’s right as he does tend to have a bit of a maverick attitude to these things and I did tell him to try anything and everything. After all, it is he that is my consultant! I’ll wait to see what he says next week - it’ll be a long few days!

sassassas profile image
sassassas in reply to MacColl

Sorry to hear all of this - that's a lot going on for you - and really hope you get home soon. At least you can speak to your consultant soon and hope he is helpful. Sarah x

Info911 profile image
Info911

My wife has extensive stage SCLC and has been on atezolizumab since January of this year. It was combined with chemo until April, and now just atezolizumab alone. She has tolerated both chemo and immuno very well. Her primary tumor reduced by about 50% on this regimen and is now stable. She receives the atezolizumab infusion every three weeks.

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