Adenocarcinoma lung cancer

[SharonTan]

Hi All thanks so much for the kind people who responded to my mothers diagnosis of Adenocarcinoma of the lungs. We’ve now had the oncology appointment and Mums PDL1 is 100% and immunotherapy is the recommended treatment. We are due to start pembroluzumab (keytruda) to start every 3 weeks in the next month. I know every is different but I’d love to hear how people have coped with side affects & if they have any hindsight recommendations that may help with side affects? Thanks in advance!

[Manninmaid]

With such a very high PDL1 expression your Mum sounds a very good candidate for pembrolizumab. I too have adenocarcinoma and my PDL1 expression is only 5% but pembrolizumab has kept my illness stable since December 2017. The main side effect I have experienced was an extensive very itchy rash when I first started the treatment. I tried a wide variety of emollient creams and a steroid cream but it was oral steroids that sorted it. I have occasionally had some skin irritation since but it has responded pretty well to Aveeno products.

Wishing your Mum well with her treatment.

Sending best wishes and positive thoughts xx 🌼🌸

[SharonTan in reply to Manninmaid]

So glad your treatment is progressing well. Thank you for responding & for your kind wishes!

[Elt79]

Hi - I was diagnosed stage IV NSCLC with brain and adrenal Mets in 2018. I had targeted radiation for my brain Mets. My PDL1 80% - started Pembrolizumab in November 2018 and completed the two years in 2020. I fortunately had mainly manageable side effects skin itching - no rash - and this has continued after treatment ended. Tiredness - more in the week following treatment and I did gain some weight. The worst for me was night sweats which I do still have. Compared to others I read about I have be lucky but as you said each individual will react differently to the medication. I wish your mum all the best and hope for a positive result.

[SharonTan in reply to Elt79]

thank you that’s so helpful!

[Cockailschemocancer]

Hi Sharon, I also has Pembrolizumab along with Chemotherapy and the Immunotherapy did a fantastic job on rebooting my immune system as I call it and reducing the cancer along with the chemotherapy. I did get a major side effect of Colitis which I just thought at first was bad diarrhoea then discovered Colitis, so I would say for your mum, don't try and be brave through any side effect, call the numbers on the card and they will monitor her for anything that is not normal for your mum, wishing her all the best xx

[SharonTan]

thank you that’s helpful & so delighted your treatment was successful

[JanetteR57]

Many have good response to immunotherapy - and although some experience side effects, this type of therapy has improved the treatment landscape no end for lung cancer patients in recent years.

This information may help answer any questions and hopefully those responding with personal experience of the treatment may help although as the treatment stimulates the patient's own immune system and none of us start from the same place on that, experiences can vary.

good luck. roycastle.org/app/uploads/2...

[Cosmic54]

hi Sharon I’ve been on immunotherapy (keytruda ) for nearly 2 years now (that’s as long as they let u have it for) as long as it suits you and you don’t get any nasty side effects it’s good stuff. All I get is tired, headache n feeling a bit sick in the AM they’re all sorted out with meds if needed.. my cancer has stabilised with the treatment. I’ve not lost any hair just make sure you drink plenty and maintain your weight. Good luck with everything pet 👍

[SharonTan in reply to Cosmic54]

that’s helpful to know & thank you for responding. Glad it’s working well for you

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello SharonTan,

As you can see from the previous replies, in general many people respond very well to immunotherapy treatment, with limited side effects. We have an information booklet on immunotherapy available you can download roycastle.org/app/uploads/2... or if you prefer you can request request a paper copy.

In the future we are planning a digital support group for people who are undergoing immunotherapy, if this is something that you are interested in contact [e-mail]. and someone will get in touch with you.

If you would like to discuss anything, you can call our free phone ask the nurse on 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

[SharonTan]

thanks!

[Boo_Radley]

Hi SharonTan, I'm on it at the minute. I've had a reasonable time of it, although they are monitoring my bloods for liver function at the moment (which may be a side effect, or may be down to the fact I've had a couple of rounds of antibiotics because of a nuisance infection to do with my biopsy). Other than that I've sailed through it. I've also had and completed chemo alongside it, again, done very well. Wishing your mum all the best - just tell her to be vigilant and report anything unusual for her to nip things in the bud, as and when they arise. They'll give her a card where she can call 24/7, it is there for reassurance and signposting in case she needs medical attention - tell her to use it and not ignore anything. And if you need to hear a positive, my last scan was all clear!

[SharonTan]

that’s amazing I’m so pleased for you! Thanks for responding

[sassassas]

Hi SharonTan

My husband's PDL1 expression was also very high (90 or 95% from memory) - he had chemo and immuno for 4 cycles and then just the immuno for 2 years now. He is no evidence of disease now and I hope your mum benefits similarly well.

He's really had very few side effects....perhaps a little more tired than he'd be otherwise and quite stiff and painful joints. Its difficult to know if these effects are due to the drugs. He manages this just with stretching and otherwise lives a very active life.

Best wishes to you both,

Sarah x

[SharonTan]

that’s wonderful I’m so glad his treatment is working well & thanks for the update on the side effects