Adenocarcinoma lung cancer: Hi All... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

5,757 members3,458 posts

Adenocarcinoma lung cancer

SharonTan profile image
15 Replies

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!

Written by
SharonTan profile image
SharonTan
To view profiles and participate in discussions please or .
Read more about...
15 Replies
Manninmaid profile image
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 profile image
SharonTan in reply to Manninmaid

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

Elt79 profile image
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 profile image
SharonTan in reply to Elt79

thank you that’s so helpful!

Cockailschemocancer profile image
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 profile image
SharonTan

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

JanetteR57 profile image
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 profile image
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 profile image
SharonTan in reply to Cosmic54

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

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy 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 lungcancerconnect@roycastle.org. 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 lungcancerhelp@roycastle.org

Kind regards

The Roy Castle Support Team

SharonTan profile image
SharonTan

thanks!

Boo_Radley profile image
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 profile image
SharonTan

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

sassassas profile image
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 profile image
SharonTan

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

You may also like...

Adenocarcinoma lung cancer

hi my mum has just been diagnosed with possible stage3-4 Adenocarcinoma if the right lung and her...

Adenocarcinoma of Lung

My husband was diagnosed with metastatic adenocarcinoma of lung cancer (T4N3M1A) last month. He is...

Adenocarcinoma locally advanced in lungs with Pleural effusion - help?!

hi all,My mum has just been diagnosed with Adenocarcinoma locally advanced in lungs and lymph nodes...

NSC adenocarcinoma of the lung

have a positive diagnosis. NSC adenocarcinoma of the lung Stage IV. its advanced apparently but...

Adenocarcinoma Left lung

two suspicious nodules in the right lung. At my last appointment my consultant said a new shadow has