my 58 y/o partner diagnosed with non small cell lung cancer in mediastinum with lymph node involvement and bone mets

[Ninjacat]

hi there. Not really sure what to ask as this is such a huge shock as it has been so quick. However, after much hassle and pushing for tests the above diagnosis was made. We were told they may not give chemo due to his deranged bloods and liver function tests. However, if they do decide it’s platinum and something? I just wondered if anyone has had experience of this treatment and what side effects Grant may have. I understand treatment is very individual, but would appreciate any advice or thoughts. Many thanks. Justine

[Cockailschemocancer]

Hi Ninjacat - treatment is so different for different people as they want to make sure the best outcomes - they may even offer radiotherapy at the same time due to the bone mets. There is so much info out there stick to the main websites though if you do go looking - Roy castle and Macmillan being the best. I hope all goes well 🤞🏼

[Ninjacat in reply to Cockailschemocancer]

thank you so much for your reply it’s very helpful

[Locket39]

hello, I have stage 4 non small cell too. I did have 3 rounds of chemo but sadly my kidney wouldn’t tolerate it. Ask the oncologist if the offer a blood test to see what gene Grant carries. It is not available in the NHS sadly and mine cost over £1000 but it showed that I able to have a targeted therapy which is tablets you take everyday. It certainly worth the ask. In regards to your question about chemo everyone is different. I felt ok just tired but I found walking really helped me. I understand that this is a scary time for you both but try to stay positive. Wishing you both well xxxxx

[Ninjacat in reply to Locket39]

thanks that great information

[JanetteR57]

Always a shock to receive a diagnosis - there are different types of non small cell lung cancer, different stages and different mutational drivers and the treatments therefore are more personalised/targeted dependent on the results.

even within platinum based chemotherapy there are two base agents - carboplatin or cisplatin and other agents plus or minus targeted agents, or immunotherapy or radiotherapy. Surgery is not usually done if it's spread beyond the lung but many are doing much better on combination therapies and newer agents if it's personalised.

The best sources of trusted information are Roy Castle lung cancer foundation which updates its information regularly and if it turns out to EGFR or ALK positive, both of these groups have extensive information on their UK pages too.

It's always most important to discuss with the clinical team as we all come into this with different health situations and given how different lung cancers behave, speaking to the clinician treating the patient directly - consultant or nurse will lead to much more accurate information.

systemic anti-cancer treatments are usually aiming to treat the mets wherever they've spread beyond the lung as well as in the lung and sometimes they also offer radiotherapy to zap spinal mets (SABR/SRS)

Roy Castle lung cancer foundation has detailed information online, downloadable and printed (order by post) and a nurse led helpline so once you know more detail about the treatment, rather than bombard yourself with too much information, delve into the information about the specifics on there.... in the meantime, this link to their treatment page may help you...do download the link at the bottom of the page for more information too.

good luck to you both roycastle.org/about-lung-ca...

[Ninjacat in reply to JanetteR57]

thanks that’s so helpful

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Justine

Welcome to the forum and so sorry to hear your partner has cancer, this is understandably a shock for you both and can be such a distressing and difficult time. please know that there is plenty support and information available for you both.

I have placed some links below on specific information booklets we have:

This link is on bone metastases and about the treatment options: roycastle.org/app/uploads/2...

JanetteR57 has provided excellent detailed information on which there is not much to add, but please find below links for both support and information available for you both.

This link is to our booklet on managing a lung cancer diagnosis:

roycastle.org/app/uploads/2...

We have a range of support services, from one to one support to online support groups through zoom , if you or Grant are interested in any of these you can register through this link: roycastle.org/help-and-supp...

We offer a one off grant of up to £150 for anyone with primary lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

To qualify for the patient grant, the lung cancer has to be a primary and it is means tested.

If you are looking anything up online, we would advise that you keep to the following websites, that provide accurate and up to date information:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

You can source local support services through this link from Cancer Care Map: cancercaremap.org/

Please do not hesitate to contact us 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

Kind regards

The Roy Castle Support Team

[Ninjacat in reply to RoyCastleHelpline]

thank you so much - incredible invaluable support so quickly . I will check the links 🙏

[VikingRoots]

I had basically the same diagnosis two years ago with stage 4 and am now clear.

The protocol was 3 months of combined chemo (Carboplatin and Paclitaxel) and immunotherapy, then ongoing immunotherapy (Atezolixumab and Bevacizumab) for two years).

The chemo wasn't a walk in the park, but wasn't as bad as I'd feared either. Side affects from the immuno aren't noticeable (poss a smidge less energy). I didn’t have liver function issues but did have a very high burden of disease at the start. Lungs, lymph, bones.

Important note: if any of the tumours can be biopsied you should get that done to check for targetable mutations. Targeted therapy should be the first port of call. This is available on the NHS I’m sure If biopsy not feasible there’s the option of bloody biopsy, but that may not be available on the NHS

They will also check for PD1/ PDL1 expression, which can make the cancer particularly responsive to immunotherapy.

[Ninjacat in reply to VikingRoots]

thank you. I think they said he won’t be responsive to immunotherapy as he didn’t have any ‘positive’ results. They are not positive re: his treatment and last week told him he only had a few months to live and max a year if he tolerates the treatment! I was appalled.

[VikingRoots]

Hi. I'm not an oncologist, so won't second guess those recommendations.

But it does sound like you need some clarity and given the stakes it's worth pushing for this. I know I was shocked and stunned post diagnosis, and suspect your Dad is similar. It was hugely helpful to have someone in my corner who could attend meetings and think rationally while I got my head right; in my case my wife. Clearly you're playing this role for your Dad - believe me when I say it's immensely valuable.

It's worth asking for a clear understanding/ explanation as to the diagnosis process to date, and what the findings where for:

1. Targeted therapy markers (EGFR, ALK, KRAS, ROS1), each of which have treatment options. I didn't have nay of these.

2. Immunotherapy marker: PDL1. I had a very high expression of this. But immunotherapy has shown positive results even for low expressions; it's given if >1% of tumour cells have PDL1 expression.

3. Bloods. If these are indicating your dad is not well enough for e.g. chemo, then specifically what and why, and whether there's anything that can be done to change.

And if you're not getting this information clearly, then I'd request a second opinion (your GP can help with this process if needed); you've every right to expect your Dad's team to respect your need to be part of the process, and hopefully this won't be a problem for you.

It's a rubbish time for you, I really hope this helps.