I'm just starting out on immunotherapy and would like to share experiences with others on the same drug. - Pembrolizumab. I'm due my 2nd treatment tomorrow. For someone who avoids taking anything stronger than paracetamol, it's all a bit scary.
I haven't met anyone with lung cancer yet, and other people I know with cancer are on radio / chemo treatments.
How have others found immunotherapy.
x
Hello GingerGus
Welcome to the forum. So sorry to hear about your lung cancer, this must be a very difficult time for you and your loved ones. Support is available, so it is good that you have reached out.
All our information booklets can be found on this link: roycastle.org/help-and-supp...
These range from diagnosis, staging of lung cancer, treatments and living with lung cancer. This link takes you to the new diagnosis information P48 has suggestions on what to ask your medical team: roycastle.org/app/uploads/2...
This link takes you to our booklet on Immunotherapy:(roycastle.org)roycastle.org/app/uploads/2...
In addition to the support I hope you receive in this forum, we offer 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... Or by emailing Ellen.Knapp@roycastle.org
Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/
I hope some of this is helpful, but if there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
Kind Regards
The Roy Castle Support Team
Hi GingergusI was diagnosed with Stage 4 lung cancer with mets in September 2019. I was 57 at the time. Never been ill before the day that changed my life. Initially had 4 rounds of Cisplatin with Pembro over 12 weeks. The response was very good with a 70% reduction in the tumour and 3 out of 4 hotshots disappearing. I was then placed on maintenance chemo and pembro for the next 2 years and had 33 infusions. My treatment finished in August 2021 and I am currently on surveillance only, in remission and CT scanned every 6 months. I never suffered any side effects to any treatment including the immunotherapy. Everyone will react differently to immuno but it is a game changer and gives hope to those suffering from this dreadful disease. I wish you all the best on your journey.
Thank you ! All very encouraging. I'm going for my second Pembro this afternoon, so fingers crossed I will have a good experience too. I'm lucky in that I wasn't diagnosed until age 77 ( though of course it was devastating ) - I cant think what it must have been like at 57. I hope you continue to do well.
I was on immunotherapy as was diagnosed with lung cancer in 2015.Inoperable lung cancer. Had a couple of chemotherapy treatments then onto immunotherapy for two years on Nivolumab.
Side effects were mostly chest related. Had frequent Bronchitis and treated with Amoxicillin in fact I had them on my repeats medication.
Prior to two years treatments I had four weeks of radiotherapy.
I then tried an experimental drug trial at Beatson in Glasgow. Was successful but side effects were very unpleasant.
However I am free of lung cancer but it had spread to my lymph nodes im my neck.
I recently had surgery to remove them . Now in 2024.
So just remain Positive always.
I'm finding survival stories very helpful - I really thought I might not see the year out. It gives me hope. Thank you.
Hi Ginger's,
Sorry for you bad news. I was diagnosed in Oct 2019 with stage 4 lung cancer . Had 4 treatments of Pembrolizumab before 10 Of radiotherapy to reduce a tumour that back on to pembro. Due my 68 pembro his week. Very little if any side effects and easy to take. It has been brilliant at keeping my cancer stable. I hope the treatment works and all goes well for you.
Best of luck
IRL.
Thank you. I hope I will be as fortunate, and manage to get back to some sort of normality.
I’m also a five year plus survivor thanks to immunotherapy/Pembrolizumab. In fact, I’ve got to rewrite my will now because I didn’t think I’d still be here and did the thing of ‘putting my affairs in order’. I also did my bucket list and am a bit broke as a result. Hoping immunotherapy will work for you!
That's wonderful. I've started sorting through stuff too, and I have a list of things to do / places to visit. Better to do them and be broke I think ! I doubt I'll be here in 5 years, given my age already, but 2 would be great. I'd like to get to 80 . Thanks for replying. xx
Here’s to you being broke at 82 and having a great number of years ahead of you!
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