We have the results back, hubby has T1cN1M1c adenocarcinoma, EGFR mutation and positive for EXON 19 so without treatment 12 months to live, , with the treatment apparently 2/3 years to live on averages, I’m heartbroken 😢 I’ve been strong since this started at Christmas but it’s hit me really hard this week, the reality has dropped I’m making calls to people and having conversations I didn’t think I would have for a long time.
So eight sessions of chemo two drugs for four of them then one drug for four sessions three weeks apart then target therapy of Osimertinib and if needed he can have immunotherapy also bone strengthening meds.
Hi
Thank you for letting us join the forum. My husband was diagnosed with NSCLC adenocarcinomo yesterday. We found the secondary’s in his bones first then had to search for the primary which has took a few weeks. He will apparently be offered immunotherapy then chemotherapy.
We are still getting our heads around all this, he had got to have a brain CT scan, what should we be asking at his oncology appointment all I can think is will he die soon. Does the treatment sound right for what he has.
Thank you.
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So sorry to hear about your husband and how difficult this must be for you both. It can be a frightening and distressing time with such a lot of information to take in and you may find that after speaking to the doctors you still have a lot of questions or you only heard part of what is being said, which is not uncommon.
Your husband should have a lung cancer specialist nurse allocated to him, they are a great source of advice, information and support. If you do not have one this can be requested either through your GP or consultant.
Lung cancer treatments have improved over the last decade with new treatments such as Immunotherapies and Targeted Therapies. For many, this can provide extension of life.
This link is to our information booklet on 'Managing your lung cancer diagnosis' and on page 49 it provides some questions to ask the oncologist: roycastle.org/app/uploads/2...
As an example, you may wish to ask things like what will the treatment be like for your husband, the length of time with the treatment and what to expect.
It is encouraging that your husband has been offered treatment and I hope you hear from others in the forum about their experience with combined Immunotherapy and chemotherapy.
These range from diagnosis, staging of lung cancer, the different treatments and living with lung cancer.
If you would like any booklets posted out to you, please let us know.
We offer one to one phone support or online support groups through zoom, if you or your husband are interested in this you can view and register for these through this link: roycastle.org/help-and-supp... there is also a carers support group. Alternatively you can email our support coordinator Ellen Knapp at ellen.knapp@roycastle.org
You are very welcome to get in touch with our ask the nurse service here, you can call us on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
I’m so sorry for your husband’s diagnosis and all the worry it brings with it. I was diagnosed with the same as your husband in January 2019 - Stage IV NSCLC which had spread to the bones. I was put on immunotherapy and chemotherapy and, six years later, I can definitely vouch that it was the right treatment for me. And there have been all sorts of further advances over the past six years.
I just got the results of my latest scans yesterday and all still clear of cancer. I live a full life too. There is lots of hope and lots of brilliant medicine out there. My oncologist says there are many coming through like me. The future is not as bleak as it can feel in these first awful few days and months.
As for what questions to ask … if I don’t understand something I ask, if I’m worried about something, I ask.
I wish you and your husband well and hopefully things will feel better once you’ve started your treatment.
it's a scary time when given a diagnosis or one is suggested when waiting for other investigations and our tendency to google can be particularly frightening. So much has changed in lung cancer treatments since my diagnosis in jan 2011 and there are now many more treatments for some dependent on the mutations within a tumour, its location and health of the patient. More treatments have been introduced in the last 10 years for lung cancer than in the previous 30 and many people are given combination treatments to good effect. I became involved in lung cancer and health research in 2013 and met many patients who had far better outcomes than expected even if it had spread beyond the lung.
There is a lot of information out there - sometimes it's an overload so take things slowly - use the Roy Castle lung cancer website which has information on so many aspects including tests,
diagnosis, treatment types, and various aspects of living with cancer - like eating well, working, financial issues, travel and many others. There are support groups online and in person in some places in charities like Maggie's centres and similar.
Keep the hope and don't be afraid to ask questions - one of the most important being 'if we have questions when we have left the appointment, who can we contact for more information?' good luck.
So sorry to read this, there's a lot to take on board. It's like a bomb going off in your life, so be gentle with yourselves. It's different for everyone, I was diagnosed over 2 years ago, and I have had chemotherapy and immunotherapy as treatment. Here if you want a natter, I did Carboplatin and Pemetrexed for chemotherapy, and Pembrolizumab for immunotherapy. I tolerated it throughout, and at the minute I've got No Evidence of Disease.
In terms of asking questions, write them down before you go into hospital so you are prepared. Take one appointment at a time, and use your Specialist cancer nurse, they are as well informed as the oncologist, but more reachable.
Wishing you both strength. Try to take it one day at a time.🙂
Hope your husband responds well to his treatment. I find it useful to list the questions that I want to ask before an appointment and write the answers down too. As Roy Castle have suggested ask to have a lung nurse. It’s good to build up a relationship with them and ask them lots of questions. Lung cancer support groups are also useful. It’s worth checking if there is one in your area. I wouldn’t like to comment on your husbands treatment plan. There seem to be so many different types of lung cancer and so many different treatments too. I am no expert. Different people have different side effects and different responses to treatment too. I find it useful to know about the side effects and also to know who to contact when I get them. It’s hard but try to take one day at a time and do nice things when you can. Not sure this is what you asked but hope it’s useful in some way x
I joined this forum 4 years ago when my husband was diagnosed with Stage 4 NSCLC at the age of 54. It had spread to his bones and was diagnosed after a scan to find out what was causing pain in his hip (we thought he needed a steroid injection for a cycling injury!).
His tumour tissue was analysed for mutations and PDL1 status - his cancer had no mutations but high PDL1 status. He was advised to have chemo and immunotherapy - he had 4 cycles of chemo (carboplatin and paclitaxel) and then continued to have the immunotherapy for 3 years (he had atezo and avastin). The chemo was pretty brutal but he tolerated the immuno really well with practically no side effects.
Anyway, here we are now, he's been off all treatment for the last year and continues to be no evidence of disease. My husband worked all through his treatment and continues to exercise at quite a high level. I hope our story, along with those of other posters here, gives you a glimmer of hope at a time when it probably feels pretty hopeless.
You ask if the treatment sounds right. There are many treatments now for lung cancer, and the key is that the right treatment is used, as they don't all work on every lung cancer. If your team have said immuno and chemo, it suggests they have identified that there are no targetable mutations and that he has a positive PDL1 score. That said, it sounds like you're still waiting for the test results from the Marsden. If the cancer has a mutation (like EGFR, ALK, ROS1) for which there is a targeted therapy, its likely your husband will just have the targeted therapy only, at least to start with.
The Marsden is world class so please be reassured that they are looking at his samples and he'll be offered the best treatment for his exact cancer.
Best wishes to you both - I hope it gets a bit easier when all the tests are done and you have a plan.
Thank you so much for sharing your story it gives us some hope. Hopefully this week all the sample results should be back and in due course we will get some more results.
I am also sorry to hear about your husbands diagnosis, but as others have said, there is so much treatment now for Lung Cancer, that outcomes are way better then they have ever been. Don't look at the stats's they are outdated, stick to Roy Castle, Macmillan and CRUL for information (never google). I call Immunotherapy Liquid Gold, I only had 8 rounds due to side effects, but it kept working and I am now coming up to my 5th Year anniversary. Surround yourself with hope and all these stories from other thrivers. Wishing you both the best.
Thank you so much for your kind reply it’s so uplifting to read you are doing so well. I have been on google and frightened myself I’m staying away now.
It’s amazing how friends have been as well, some good one’s have gone silent, one even messaged me and said I’m not texting as I don’t know what to say, when all we want is just to be treated as normal x
Oh I am sorry to hear that, some close friends don't know how to cope and can do that, just focus on what you can control and take a breath and also factor in some lovely things together too ... x
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