Looking for someone going through something similar to me! Metastatic lung cancer spread to lymph nodes and spine?

[Guddamc]

I’m 40 and have stage 4 lung cancer which has spread to my lymph nodes and spine. Anyone else in the same situation? I’m interested in what treatment you are getting or had that has proved successful? Thank you

Kate

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Guddamac,

Welcome to our forum, I am sorry to hear of your diagnosis, this will understandably be a time of great anxiety for you and the whole family. There are many here on this site who have been in a similar position to you and I am sure that they will share their experiences with you.

You should have a lung cancer nurse specialist she will be a great source of information as she will work closely with the team whose care you are under and will be able to answer any questions regarding investigations or treatment regimes.

You may have seen our information already, but in case not, here is the link to our booklets from diagnosis, through to treatment booklets and living with lung cancer

roycastle.org/help-and-supp...

There are many encouraging and inspiring accounts from those who have been where you are and can be found on this link:

roycastle.org/campaigns/lik...

As others have said do stay away from searching the internet, we would advise to only look at the approved research evidence based sites e.g.

roycastle.org/

cancerresearchuk.org/

macmillan.org.uk/

You may be interested to look at the lung cancer pathway from NICE (The National Institute of Health Care and Excellence). These are the guidelines in the UK that all oncologist use in the treatment options for any type of cancer. This link will take you directly to a flow chart, where if you click on the icon that looks like a mobile phone, this will open up the flow chart and you can click on the type of cancer that you have and the treatment recommendation

nice.org.uk/guidance/ng122

There is plenty support for you and if you would like to discuss anything you can either email the nurses 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

[sassassas]

Hello Kate,Welcome to the site - and sorry you've had to join us. There are a lot of lovely, supportive people here and I'm sure you find this too. There is another lady who has just posted who is recently diagnosed and is also 40. I hope she replies here.

For me, its actually my husband who has NSCLC - he's 54 ( we think we're young but we're a good bit older than you!). He was diagnosed in March '21 - stage 4 with extensive bone mets. He had 4 cycles of chemo (carboplatin and paclitaxel) with immunotherapy (avastin and tecentriq), and then dropped the chemo to have just the 2 immunos every 3 weeks. The treatment has been really successful so far. His bone mets are no longer visible (and weren't after just 2 cycles of the chemo). He still has a little activity in his lungs and lymph nodes but its stable. The chemo was tough but did a good job; the immunos he is able to tolerate really well, with really only a little fatigue as a side effect.

Do you know what you'll be offered or are you still waiting for test results?

Best wishes to you,

Sarah x

[MrsL40]

Hi Kate,

I’m so sorry to hear about your news. I’m in almost exactly the same position. I’m also 40, and was diagnosed with lung cancer just before Christmas. I have nsclc in the top of my right lung which has metastasized to my scapula, and is in my lymph nodes. Have you had your molecular profile done? Sadly, I’m not really a candidate for immunotherapy (my PD-L1 was negative), and my genetic driver is a rare type of EGFR (exon 20) which doesn’t respond well to targeted treatment. So I’ll be starting chemo and radical radiation next week. Or at least I should be… but I’ve just found out there is COVID in my daughter’s class, so not quite sure what will happen there. Fingers crossed we avoid it!!!

How are you holding up? Have you had treatment options discussed with you yet?

Gini x

[Ellejayb]

So sorry to hear about these diagnoses at such a young age. I was 59 when I was diagnosed with Stage 4 NSLC which had spread to the spine and lymph glands. That was in January 2019 so it’s my three year ‘cancerversary’ this month. I had an initial four cycle blast of carboplatin, permextred and pembrolizumab. I then continued with pembrolizumab and maintenance permextred at three weekly cycles for a year. I was pulled off permextred in March 2020 when Covid struck and continued with six weekly pembrolizumab which I still have now. (I was lucky to have private medical insurance and BUPA agreed to fund ongoing immunotherapy which I wanted to try even though going beyond two years is seen to have some risks.)

I live a full life and consider myself very lucky but in reality it’s the wonderful treatments now out there. There are lots of us who are very ‘lucky’ - many more than the horrid google stats would have us believe. In the three years since I was diagnosed, lots of new treatments will have come on board. You’re doing the right thing arming yourself with all the knowledge (and hope) you can.

All the best to you and please keep us posted because we can all learn so much from each other’s experiences.

[Straylian]

I was diagnosed with NSCLC in October 2019. Tumour to left lung, enlarged lymph nodes and mets to spine (2), hip and shoulder blade. I was put on permatrexted and cisplatin for 4 cycles the moved onto maintenance chemo and immunotherapy. I have had no side effects to any treatment and completed the course in August last year. My latest scan in January showed a 75% reduction in the tumour, lymph modes back to normal and only 1 bone met still visible. I wish you all the best.

[MrsL40]

Ellejayb Straylian do you mind me asking what your PD-L1 status was? My oncologist hasn’t said anything about immunotherapy… just wondering if I should be asking more about that for maintenance/second line treatment? (I’ll be starting permatrexed and cisplatin next week, I think… scary!!)

[Magsx123x in reply to MrsL40]

Hi MrsL40 so sad to hear of your cancer diagnosis my goodness so young . I was diagnosed just before xmas 2021 Nspcc in both lungs had surgery on both with chemo in between surgeries but now left with lymphovasciluar invasion which is worrying me so much have anyone here heard of this sorry for rambling on

[Straylian in reply to MrsL40]

HiMy PD-L1 was shown as <50%. I found it useful in the early stages to prepare for oncologist meetings by writing down all the questions I had. Not everyone will be suitable for immunotherapy but I certainly would ask your oncologist. I wish you all the best.

[Ellejayb in reply to MrsL40]

My PD L1 is about 93% which is incredibly high. Six-monthly scan on Wednesday so hopefully the Immuno is still doing it’s job! (Have a love/hate relationship with scans.)

[scraapi]

Hi, I am 54 and have stage 4 lung cancer (it is also in the lymph nodes(The first I knew of it was through pain in my back. The cancer has spread to my spine and my L5 bone has collapsed. We found all this out in June 2021. Neither can be cured. I had a week of radiotherapy on my back in June 2021 and am on 'targeted treatment' for my lung. I could not be offered chemotherapy so was glad to hear that my tumour has a mutation allowing 'targeted treatment' to be tried.

Am due a CT scan this month to see if this therapy is working xx

[MrsL40 in reply to scraapi]

Hi Scraapi

Did the radiation help with the pain? The pain in my shoulder blade is horrible-really hoping it will help!!

Wishing you positive news at your CT scan!!

Xx

[scraapi in reply to MrsL40]

Hi MrsL40It did not help too much with the pain but a lot of my pain is due to the collapsed L5 bone in my spine. I am hoping it has reduced the size of the tumours in my spine, due to find out, I hope, as well if it working on the cancer in my lung (which doesn't hurt at all).

I really hope if helps the pain in your shoulder blade, do you have to wait very long for treatment to start?

Best wishes

xx

[PLHLisa]

I'm in the US. I was 44 when I was dx 6 1/2 years ago EGFR exon 19 deletion with mets to both l lungs, spine at L5 and later lymph nodes.

My treatments have been targeted therapy, 1st line Tarceva and Iressa, radiation to right lung, lymph nodes and spine and iv chemo. I'm currently on 2nd line of targeted therapy, Tagrisso for almost 4 years.

I've heard of combining other treatments with immunotherapy for different EGFR lung cancers. Don't rule out out completely. Find EGFR Resisters on Facebook. There tons of info and EGFR survivors there.

--Lisa🙂

[MrsL40 in reply to PLHLisa]

Thanks Lisa-I’ll have a look at the EGFR Resisters site. Xx

[Manninmaid]

Hello KateI am so sorry to hear this news.

I too have lung cancer which travelled through lymph nodes into my spine and down on to my right femur. I was diagnosed in February 2016 having just turned 53. I had seven days’ emergency radiotherapy followed by four cycles of combined carboplatin and pemetrexed then five cycles of maintenance pemetrexed. I also had a pleurodesis operation to stop the build up of fluid between my lung and chest wall. The cancer responded positively to the chemo and reduced, but the chemo was becoming increasingly difficult to tolerate. Hence I had a break from treatment other than for denosumab injections to help protect my bones, which I have continued to receive since soon after diagnosis. It was a year before my cancer spread further into my neck and left pelvis. In November 2017 I had a further single blast of radiotherapy, then in December 2017 I commenced pembrolizumab immunotherapy. I am fortunate that, although I only have the PDL1 expression at 5%, it has kept my cancer stable so far. As I have BUPA health insurance I have been able to continue on this treatment beyond the two years for which the NHS funds it.

I try to have a reasonably healthy diet (with a few treats of course!😊) and have found Pilates classes very beneficial from both a breathing and mobility point of view, Our local hospice runs a singing for lung health group and exercise sessions to help with fatigue and breathlessness, which again are very beneficial. There may be similar in your area. Complementary therapies are also worth exploring not least from a relaxation perspective.

Sending best wishes and positive thoughts. xx

[Hidden]

Hi Kate I was diagnosed last September with NSCLC Stage 4. It had spread to my spine, lymph nodes, small area of brain, and liver.

I have had immunotherapy which didn't work, and now on chemo, 5th session next week.

I have had PET scan, Bronchoscopy, and REBUS procedure. Radiotherapy to brain which was done at Salford Royal, on a CT scan and a mask attached to my face which was rather traumatic. They said it had been successfully zapped!

I am quite confident in the treatment I am receiving, and what with drug trials there's always something more successful on the way.

Hope this helps.

Pam xxxx