QUERY RE: LUNG CANCER AND BRAIN METS

[Gymbuddie]

I am 59 years old and I was diagnosed on 01/03/2022 with Stage IV lung cancer (primary) with mets to my brain, upper back, spine, bones and liver. My cancer is ALK Positive and I have been on Brigatinab, (which is a targeted therapy treatment) tablet since about April 2022. I also have an infusion 1 x per month of Denosumab.

To date, I have responded positively to my prescription to the extent that the cancer has shrunk and in many places has disappeared. I feel healthy. I continue to work, do aerobic classess 4 x per week, travel and socialise frequently.

However, recently, I have noticed that I am suffering from mild headaches, like I did prior to being diagnosed with brain cancer. So I am now worried as I am wondering whether the headaches are a sign of cancer progression in my brain.

I have CT and MRI scans every three months. My next scans are in January 2023. I don't know whether I need to contact my MacMillan Nurse or await my consultation with my oncologist in January 2023.

I would be grateful for any advice that can be offered to me.

Many thanks.

[nlg1405]

Always contact them and share your concerns. Although January is only a few weeks away, I wouldnt wait. A matter of weeks can make a big difference. It sounds like you are responding really well to your treatment which is amazing so hopefully the headaches are just down to something simple. All the best x

[Gymbuddie in reply to nlg1405]

Thank you for your response. I am waiting for my nurse to get back to me as she is checking whether my appointment can be brought forward.

[Bow-19]

Hi I am on brigatinib too. If you are ALK positive it’s worth joining the ALK Positive Facebook group and posting on there too alkpositive.org.uk

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Gymbuddie,

Thanks for sharing your experience so far. Good to hear that you are feeling well and living life. Sorry to hear that you are experiencing headaches. That must naturally be very worrying.

Any new symptom should always be discussed with your medical team, so you have done the right thing contacting your Cancer Specialist Nurse and hopefully your appointment can be brought forward. In the meantime you are not alone, there are many support options available to you including this forum.

All our information booklets can be found on this link: roycastle.org/help-and-supp...

These range from diagnosis, staging of lung cancer, treatments and living with lung cancer.

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

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

Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/

This link from Cancer Care Map provides information on what support there may be locally for you: cancercaremap.org/

This may also be useful from Macmillan support: macmillan.org.uk/cancer-inf...

If there is anything else you would like to discuss 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

Wishing you all the very best

Roy Castle Support Team

[Bow-19]

Also worth joining alkpositive.org which is the worldwide group and has people from around the world in it.

I would say if you have any concerns it’s worth feedbacking to your Oncologist or Nurse to ask for their advice. They will be able to ask you more questions about your headaches etc.

Roy Castle Lung Cancer Foundation also have good booklets on their website about targeted therapies and also about brain mets. Definitely worth a read if you want to know more.

Xx

[Gymbuddie in reply to Bow-19]

Thank you. Your comments are helpful. I am already a member of the ALK Positive organisation which had been informative and inspirational. With much insistence I have managed to get my scan put forward by a week. I suppose it all helps!

[Bow-19 in reply to Gymbuddie]

Glad you have got your scan moved forward a week. Hope everything is ok xx

[Gymbuddie in reply to Bow-19]

Thank you