still Baffled

[Red58]

so as I’ve posted it spread from lungs to brain all my treatment stopped. Spoke oncologists yday say her about loose stools and stomach cramps she will give me buscopan and immodium and see how goes in a week she doesn’t want give me anything for dizziness at moment. She mentioned some marker from my biopsy last year she say if i have it they can start me on a pill which was used for other cancers but has shown shrunk lung cancer I can’t get radiotherapy for brain say wouldn’t work I’m not hold my breath has anyone heard of this pill don’t know name To be honest I just want all this to be over done with mabe just way feel with stomach pain I’m not scared to die I’m scared die in pain ❤️

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Red58

So sorry to hear how you are feeling overall. I hope your colon symptoms settle down with the medication.

It may be that the oncologist is thinking about targeted therapies, which can be in tablet form, I have placed two links below, one is on brain metastases and the other on targeted therapies.

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

and

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

Please be reassured that there are many medications that can provide comfort and pain relief at end of life. One of the very common end of life symptoms is extreme tiredness and the person continuously sleeps. There are specialist palliative care and pain management teams who provide this care, either at home or in a hospice. However, it is encouraging that your oncologist is still thinking of a possible treatment for you.

Hope you hear from others who have been on targeted therapies. When you are in pain or discomfort constantly, it can be wearisome and everything can seem overwhelming, be kind to yourself.

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... , alternatively you can email our support coordinator at [e-mail]

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

You are welcome to email ask the nurse, if you would like to discuss anything 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

All the best

The Roy Castle Support Team

[Locket39]

Hi Red58

Sounds like you are being very strong and brave. I think they are putting you on a targeted therapy which is what I am on. So many people have had great success using targeted therapy. My cancer has shrunk and remained stable for 8 months so far and I feel great. Good luck to you and if you have any questions please reach out.

💪 😀

[Sharkey1234567 in reply to Locket39]

Hi Locket39

So great to hear you are feeling great and 8 months on, do you mind me asking what kind of lung cancer you have? My mum has just been diagnosed and my head is a spin. Many thanks

[Locket39 in reply to Sharkey1234567]

Hi I was actually diagnosed in march 21 with stage 4 nsclc. I have had chemo, immunotherapy, stereotactic radio surgery to the brain and now on targeted therapy. Don’t get me wrong there have been some bumps on the road but I am still positive and determined not to let it take me down. I did the race for life in May which was great! I would recommend walking and remaining positive.

[Red58 in reply to Locket39]

Thankyou and wellDone I will

Keep you posted ❤️

[Sharkey1234567 in reply to Locket39]

Thank you for replying! You are an inspiration to be so upbeat…well done! And thank you

[Red58 in reply to Locket39]

They told me radiotherapies wouldn’t workOnly thing is check pathology to find out if my biopsy had a marker they might be able give me a pill but what about the lungs I’m now under palliative care nurses so depressed having stomach issues which not helping x

[Locket39 in reply to Red58]

Bless you. I know it’s difficult but try to keep your mind active. I find walking the best thing for me. I also still work full time. Just had an MRI so treated myself to a KFC on the way home lol. What about a good box set to watch or some gardening? I find gardening really helps. Stay strong x