Stage 4 nsclc advanced to adrenal gland

[555Violet555]

Hi,

I'm recently diagnosed with the above, awaiting treatment plan (which will probably involve carboplatin,paclitaxel and pembrolizumab.

I'm not yet 40, never smoked.

I've been feeling exhausted on some days, some dizziness even. I'm wondering if I should attribute this to the metastasis -has anyone had similar story, and if so, what helped to stay "ok" at least?

Thanks!

[beesgood]

hi

Snap - also have stage 4 with mets to the adrenal gland. I started treatment with pembro about 10 days or so…

I didn’t feel too tired, but there is a lot of stuff our bodies are dealing with. Luckily we do have 2 adrenal glands so that may help…. prior to treatment I did concentrate a lot on food and nutrition which really helped get my body in better shape and also made sure I did some light exercise daily…

I did start going to bed earlier - mainly as I wanted to do some breathing and meditation exercises…being relaxed, I fall asleep very quickly

But it’s also fair to say that my mind has worked overtime in the last few months prior to treatment and I know that’s taken it’s toll on me too…so do feel tired generally…and I’ve definitely been happy to take a rest or cheeky nap when I’ve needed

I’d speak to your drs/nurses if you’re getting dizzy a lot as that may need looking at.

Good luck and sending positive thoughts

[555Violet555 in reply to beesgood]

Hi! Many thanks for your reply! Can you elaborate about how you concentrated on your food and nutrition prior to the treatment? I've been thinking about that too and wasn't sure where to start...

[beesgood in reply to 555Violet555]

hi I found a dietician that specialises in oncology. We’ve primarily been working on improving the gut micro biome so eating a wide variety of vegetables, fermented foods, and foods to help promote a heathy micro biome. We cut back on red meat, processed food and increased foods that are high in good helpful nutrients (eg broccoli, wide variety of green leafy veg, blueberries, kafir yoghurt, whole grains instead of processed grains, lean meats like chicken and turkey etc etc). Also been drinking a lot of good quality green tea too and lots of water…I think it really helped reset my body prior to treatment. Prior to treatment I was overweight and I wanted to lose some of that so that my body had less to deal with…now I’m in treatment I want to keep my weight stable.

I felt really good as I started treatment - probably the best I had for a few years. Now I’ve started Pembro, im being less strict and eating what I feel like when I feel like it if that makes sense

Hope that helps and I did tell my drs what I was doing

[sassassas in reply to beesgood]

Hi there beesgood

That's really interesting...that's exactly what my husband is doing!

He was diagnosed with Stage 4 NSCLC two years ago and is doing really well on immunotherapy (no evidence of disease).

We keep reading research (being done by excellent cancer centres like MD Anderson in the US) into how the microbiome influences how well immunotherapy can work, so he too works really hard on his diet, exactly as you have described.

555Violet555 best wishes for your treatment. There are some excellent drugs available for lung cancer now, and many more will be available in the coming years.

Sarah

[beesgood in reply to sassassas]

thanks so much for sharing and great to see the NED status I’ve learned so much about diet and the micro biome recently- it’d be great to have learned that earlier and I’m so glad to see it may have helped someone else too😂

[Elt79]

Hi - sorry to hear about your diagnosis. I was diagnosed in 2018 stage IV NSCLC with Mets to adrenal and brain. Have to say I never experienced any dizziness prior to treatment - probably worth mentioning to your team? Despite my poor prognosis I have done well - first line treatment for me was Pembrolizumab with stereotactic radio surgery for brain Mets. I finished treatment in 2020 and still NED so positive result so far! Wishing you all the best with your treatment x

[555Violet555 in reply to Elt79]

Thanks, I am so happy reading your reply, I was desperately looking for some positive outcomes! I'll definitely mention the dizziness to the team...

[JanetteR57]

it's very scary at the start and our minds take time to process what we're hearing whilst our bodies are doing their best to cope with treatments for the condition.

I'm a member of a UK Facebook group for lung cancer patients and the lady who set it up thought she was at stage 2 and had surgery some years ago then learnt during the pandemic it had spread to her adrenal glands. Initially she hadn't had follow on treatment only surveillance but then found out the adrenal mets had been there all along so she had been stage 4. She's now on treatment for that and updates members regularly - she's older than you and has COPD but remains motivated and chipper most of the time.

Regarding diet/exercise/keeping active - it's quite a minefield with much information not proven or evidenced except in small numbers.

However a couple of books I found helpful when diagnosed in Jan 2011 (52 also a never smoker )were 'cancer is a word not a sentence' by Dr Rob Buckman and ''anticancer - a new way of life' by Dr Servan Schreiber which is both a personal cancer journey but also many recommendations about improving life holistically after a cancer diagnosis.

Good luck with your treatments.

[Bow-19]

Definitely worth mentioning the dizziness to your Oncologist or Nurse. Also wondered if you have been tested for mutations since being diagnosed?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello 555Violet555

There is some very helpful information and advice above. As others have said it is best to let your team know about the fatigue and dizziness, they like to be kept informed of any changes.

We have information booklets on Chemotherapy and Immunotherapy you can view them on the links below, if you prefer you can request a paper copy.

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

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

In the future we are planning a digital support group for people who are undergoing immunotherapy, if this is something that you are interested in contact [e-mail]. and someone will get in touch with you.

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

Kind regards

The Roy Castle Support Team