My brother

[Brianderrick12]

Hi everyone - we're just starting out on this journey & trying to stay calm. My brother is 61 - under investigation since January - in that time it just feels like every 2 weeks or so his situation gets worse. He has a 5 cms tumor in his left lung - his lung collapsed and that's how we found out he had cancer. We were told we were fortunate & that he could have surgery at Guys hospital - he now can't have surgery because of his lung function - he has COPD. We got a letter to say he was stage 3 - contained in one lung etc - that was before biopsy. He had a biopsy & his lung collapsed again - 9 days in hospital & his chemo delayed. We then got another letter - T4N0M0 - very upsetting - two weeks later we have another letter T4N0M1a - we are now a bit shell shocked & clueless as to how this seems to be happening so quickly. His chemo is scheduled for the 23rd May so nearly 5 months this has been going on - feels like a long time or is this normal with lung cancer ? He's having Pemetrexed and Carboplatin - he's having Pembrolizumab at the same time - finding it very difficult to stay positive at the moment but I never let him see - he suffers from anxiety & depression unfortunately - tough times - Thank you - grateful for any info received x

[Cockailschemocancer]

Oh gosh this is the worst time being diagnosed and before starting treatment. I would suggest anti anxiety meds to help and counselling to talk it through and read loads of stories on Roy Castle to give some inspiration. Hope his treatment goes well! Xx

[Brianderrick12 in reply to Cockailschemocancer]

Thankyou- he won’t talk about it at all - makes him feel sick - myself & my sister are doing all we can to support him & find information- maybe he’ll be better once we start the treatment- fingers crossed

[Cockailschemocancer in reply to Brianderrick12]

Oh gosh I hope so! It’s a hard place but find some encouraging stories to print out and share with him. I’m 2 years post diagnosis and my head is in a totally different place now to then! X

[Brianderrick12 in reply to Cockailschemocancer]

I try & drop case studies into the conversation if I can so he doesn’t feel as desolate- just hoping that when he starts treatment that things calm down - worried he’ll give up on the treatment if it starts to make him ill xx

[sassassas]

Hi Brianderrick12

I'm so sorry to hear about your brother. Cancer is a horrible disease, physically and mentally, and on this site, we all understand this only too well, whether you're the patient or those closest to them. He's lucky to have you and your sister there for him.

As Cockailschemocancer says, it is so hard when you're waiting for treatment to start. I'd say it's pretty normal to wait a few months from initial diagnosis to completion of all the tests & scans before you can start treatment, even if everything goes to plan.

All that said, you can have hope about the treatment! There have been incredible advances in drugs to treat lung cancer in the last couple of years. This is one of the reasons why it takes so long between the initial diagnosis and treatment - they can find out which drugs will work (and which won't) with biopsies, blood tests and genetic tests.

There are many people living well with lung cancer with these new drugs, even when their disease was diagnosed at the latest stages. My husband was diagnosed in Feb last year with massive lung tumours, lots of lymph nodes involved and tumours in his spine, ribs, hips and leg bones (one of these was 8cm long!). It was an utter shock and frankly, we weren't sure if he'd be around much longer. He started treatment in April (chemo & an immunotherapy like pembro). He went through the mill for the 1st 3 months with the chemo, but he is currently 'no evidence of disease' (used to be called remission) and is as fit and well as he ever was (he's 55 and a huge cyclist and now rides to the same level as before). He has his immuno every 3 weeks but with no real side effects so is living life normally.

Some other thoughts

- are you regularly in touch with your GP? They can help make sure things are progressing as they should and may also be able to help with your brother's mental health.

- The Roy Castle nurses here and Macmillan have amazing support lines. If you can get your brother to talk to them (phone, chat, or if you're near one of the Macmillan centres), they can be incredibly helpful. You can also talk to them as you'll need support too.

- has his tumour been tested for mutations? I suspect it has, given he's on pembro, but worth asking to confirm.

- don't bother looking at the stats for lung cancer prognosis - they are old stats and don't reflect these new treatment options

- Chemo is tough but it is manageable. Try to get your brother to do some exercise and eat well in these weeks before he starts. It does make it more manageable.

Best wishes to you all.

Sarah x

[Brianderrick12 in reply to sassassas]

Thankyou so much - I will tell him about your husband if that’s ok - it’s so hard - he’s not stable at the best of times & this has knocked him for 6 - he’s just got a new job & loved it - I’m going to give him the tel numbers - think it’s a good idea - don’t think he’d ever talk freely with us - I worry that he’ll give up on the treatment- he was horrific in hospital & to be honest he was just sat in bed with a vacuum machine - time will tell - he has genetic testing abbreviations on his results - EGRF & something like BRAF wild - I’m just hoping that it’s worse before it gets better & then we can all calm down a bit - Thankyou for your info x

[sassassas in reply to Brianderrick12]

My pleasure. Yes, please do share my husband's experience with him. At the beginning, we really didn't think there was much hope, but we have been proved very wrong!

Good to hear you have got the genetic testing done. It means he hasn't got any mutations that can be treated with a specific drug, but they must have looked at the PD1/PDL1 marker to see that he's suitable for the immunotherapy which is good news.I think your comment "worse before better" is spot on. I'm afraid you and he are currently in that tough time - the shock of the diagnosis and the waiting for treatment. Hopefully you'll start seeing some improvement in his symptoms within a month or so of his chemo starting 🤞.

Sarah x

[Brianderrick12]

Yes - on his letter he has EGFR - KRAS - BRAF wild type & PD - L1 < 1 percent - we’re hoping his treatment might help the tear in his lung etc - he’s struggling to shower with the tube in his chest - keeping him calm is proving difficult but hopefully he’ll settle into the regime & not be too ill x

[Ellejayb]

It's a horrible time and I really feel for you all. Another uplifting case story hopefully to add. I was diagnosed with Stage 4 NSCLC in Jan 2019 and put on the same combination of chemo and immunotherapy as your brother. Sure, I never take any day for granted - it's a privilege - but I'm doing fine and live a full and active normal life.

I hope it works out for your brother. As others have said, once you start the treatment it feels a lot better mentally.

[Brianderrick12 in reply to Ellejayb]

Thankyou so so much - I’m collecting stories for him - his mental health is fragile - anxiety depression etc - had a life changing head injury when he was 13 - we need him to start & stay on the treatment- he’s already said that he’s fed up & will take his chance - just praying he’s not too ill when he starts - Thankyou & take care x

[Ellejayb]

The first three months will be brutal but worth it.

I appreciate there are other challenges here with your brother so any sentence would sound glib. But it is doable.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Brianderrick12

Welcome to the forum, all be it under the news of your brothers cancer. Sorry to hear he has lung cancer and how distressing and challenging it is for you all.

This link will take you to our information booklets, which range from, diagnosis, the different treatments and living with lung cancer.

This link is 'Managing your lung cancer diagnosis' roycastle.org/app/uploads/2...

This link provides information on chemotherapy: roycastle.org/app/uploads/2...

The presence of EGFR, KRAS etc may provide more treatment options for him. Treatments like targeted therapy and immunotherapies are only effective if there are specific cell mutations/proteins present from the biopsy.

There is a clear , diagrammatic, explanation of lung cancer staging from Cancer Research UK that you can find on this link:cancerresearchuk.org/about-...

The family or carers can suffer just as much in a different way and there is plenty support available for your brother and yourselves. We offer a range of support services from one to one support to online group support through zoom. This link provides details of these: roycastle.org/help-and-supp... alternatively, you can email our support coordinator [e-mail] to discuss any support needs.

We offer a one off patient grant of up to £150 for your brother, you can access the patient grant form through this link: roycastle.org/patient-grant...

You may find that emotions come and go, can be quite intense then pass, these are all normal and this link from Macmillan support may be useful in helping your brother cope: macmillan.org.uk/cancer-inf...

Your brother should have a lung cancer nurse specialist allocated to him, they are a great source of advice, support and information. He can request this through his GP or oncologist.

If you are looking anything up online, we would advise you to keep to the following websites that provide accurate and up to date data, e.g

roycastle.org

cancerresearchuk.org

macmillan.org.uk

These links will take you to some encouraging and inspiring accounts from those who have been through the diagnosis and treatments: roycastle.org/campaigns/lik... and

roycastle.org/campaigns/sti... and roycastle.org/campaigns/fol...

If you would like to discuss anything you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Take care of yourself also.

Kind regards

The Roy Castle Support Team

[Brianderrick12 in reply to RoyCastleHelpline]

I can’t thank you enough for your information. I’m so glad I joined - I’ve received so much help from this forum in such a short time - feel much calmer & will be more help to my brother - on behalf of my family we’re grateful xx

[sassassas in reply to Brianderrick12]

That's lovely to hear Brianderrick12 - its a pretty rocky road to be on (can't deny that!) but there's every reason to believe it can be a long one x

[Brianderrick12 in reply to sassassas]

Thankyou- he’s having a meltdown- he went for a VitB12 injection yesterday & people were having their chemo - think it’s all becoming very real for him now & he’s petrified- on top of his health issues he has a needle phobia- makes him throw up - we just need to get him started & calm him down. Thankyou for your support xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

You are very welcome, and those on the forum provide such great support and encouragement.Kind regards

The Roy Castle Support Team