My partner was diagnosed with Stage 4 NSCLC recently aged 30. He doesn’t like looking up anything on the internet, and prefers if I do it. I have so many questions and I was wondering if anybody could shed some insight? I feel like I am drowning in information!
- when he was diagnosed he had a large amount of fluid drained from his lung due to pleural effusion. A biopsy was done on this and found no mutations. We paid for a Guardant 360 liquid biopsy and this came back with an EGFR Exon 20 mutation. My question is, can mutations change over time? For example, is it possible for him to pick up a different mutation? If so, would it be worth getting another biopsy? And if so when?
- I have recently been looking up Photodynamic Therapy for lung cancer. Would this assist in treatment, and how would we go about getting this?
- at the moment he is on permextred and prembolizumab which he has every three weeks. Originally he was on carboplatin for the first 4 cycles. After his first CT scan showed that the main tumour had shrunk slightly, the oncologist stopped the Carboplatin. I see a lot of people being offered radiotherapy as well - is this something that could help? Or is radiotherapy something to consider further down the line?
- would he benefit from taking vitamin D supplements? Or are there any other supplements that could help?
I am so sorry for all of the questions. But any advice or information would be greatly appreciated! Thank you
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gg1408
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There is an excellent EGFR website and Facebook group you can join to get support information and advice. Diagnosis always comes as a great shock to us but you will find strategies to cope with living with cancer. Good luck.
Hi there, there are loads of people with EGRF on Instagram you could follow. From my little knowledge most who have EGRF are on a different treatment, but that’s not to say that the one he is on isn’t working (there are no quick fixes here - I had that treatment and I call it liquid gold) also I believe protocol is once have one treatment you can’t have it again, so stick with the one that is working then if it stops maybe look at the targeted therapy for EGRF. Best of luck to you both … it’s not all doom and gloom, promise! Xx
Hi There as below please join the EGFR positive UK group they are all really supportive and have helped me with regards to having the rare exon 18 mutation for which there isn’t at present any targeted therapy. There are a number of trials that might also be accessible and people on the group with exon 20 will be able to signpost you. There is another group called Egfr resisters based in America who again are helpful. Mutations do not change as they are linked re DNA, everyday there is new hopeTake Care x
Hello gg, very sorry for your husband. He is very young for lung cancer but egfr mutations do affect younger people. I also have the mutation which was picked up at the 2nd sample sent. Sometimes samples aren't good enough. I was on the same treatment as your husband and had radiotherapy (that can bring later side effects and in my case lung scarring) but the treatment work as after 4 cycles of the triplets the cancer is gone, at least for now, but it is very hopeful. There are drugs specially good at tarjetting egfr and exon such as tagrisso but really it is up to your oncologist and best discuss with them. Yes the EGFR face book is great for support and info. As for bit D I would ask oncologist or LC nurse as with chemo there are lots of supplements or herbal stuff that one cannot take. Good luck to both of you. Chanie
As said before worth joining both of these groups. I have a different mutation ALK but get my main support about ALK from the UK and worldwide sites. I would definitely recommend joining both of these groups and asking your questions there.
Roy Castle Lung Cancer Foundation also do a Targeted Therapies booklet which is worth reading too. Lots of reading and you will soon become an expert and have lots of questions to ask your boyfriends team. I know in the ALK group there have been people from age 17 upwards, which you don’t expect with lung cancer. Younger people are definitely being diagnosed. Joining these groups will also allow you a link to the research that is going on.
I wish your boyfriend the best response to his treatment. Thinking of you both xx
Welcome to the forum and so very sorry to hear about your boyfriend having lung cancer, it is a difficult and challenging time for you both, and there is lots of information and support available.
It can be quite overwhelming the amount of information you may be looking at, and it important to source information from accurate and up to date websites:
There have been good replies from others in the forum and do go to the EGFR website where there is a host of information specifically for those with the EGFR mutation: egfrpositive.org.uk/
Mutations, for some, can change over time, however, as others have said to go with the recommended treatment from the oncologist and the follow up CT scans will show what effect this is having on his cancer.
Treatments can be labelled, first, second or third line and these are based on their regulatory licensed use, e.g some targeted therapy drugs may only be used after first line treatment has been given i.e combination therapy of chemotherapy and Immunotherapy.
This link from NICE (The National Institute for Health and Care Excellence) details the recommended treatment options for lung cancer EGFR mutations, in the form of a flow chart: nice.org.uk/guidance/ng122/...
Unfortunately, any adults with lungs can get lung cancer; equally it must be a shock for you both as it is often viewed as those who are older.
We have many information books on the different treatments and living with lung cancer which can be found on this link: roycastle.org/help-and-supp...
As Chanie has said, it would be advisable to check with the oncologist before taking any supplements to ensure there would no interaction with his treatment.
As you find more information, it may generate more questions to discuss with the oncologist. Photodynamic therapy may be suitable for those whose cancer has grown into the airways, have difficulty breathing, bleeding or persistent coughing, so it can assist in reducing symptoms.
We have online support groups or one to one telephone support, if either of you are interested in this you can register through this link: roycastle.org/help-and-supp...
If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call the 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, as this must be quite emotionally exhausting for you.
There is an Exon 20 Group and the Director, Marcia Horn, is an amazing advocate. You can reach out to her and join group and it you can have a lot of your questions answered there. I called her the other day because I didn’t feel like my oncologist was taking a proactive approach and she was so helpful and informative.
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