No news yet on next steps

[magstherunner]

Hi All

I was expecting to see the oncologist on Tuesday with the results of the further test on cells for mutations but the results haven't come back yet - so more waiting. Hopefully the results will be available in the next week or two. I know that having a new mutation is a long shot (there weren't any 20 months ago when I was first diagnosed but apparently new mutations have been identified and that's why they are testing my cells again). If there are no mutations to target then I will need to consider a more aggressive form of chemotherapy as the chemo and immunotherapy I had been receiving has stopped working.

Unfortunately the pain in my right shoulder blade has worsened and I was advised by one of the lung nurses to try paracetamol 4 times a day and intersperse with ibuprofen 3 times. Unfortunately this has not been sufficient - although just about manageable during the day, night time and during the night has become difficult to manage so my GP has prescribed me oramorph for the night time, 5mls, which is much better. I don't know how long I'll be able to manage the pain with over the counter pain relief in the daytime though.

On a more positive note - I have celebrated another birthday - my second since diagnosis so that is great and we've just had a lovely weeks' holiday in Cornwall with walks, meals out and pub nights. Great to feel "normal" for a change!!

Take care all. Mags x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mags

Sorry to hear you are having pain, do let your GP know that you are not having full pain relief during the day, it is a priority that you are comfortable. Do not hold off asking for more pain relief if your pain continues or gets worse.

Hopefully they will detect some mutations that will give you the opportunity for treatments such as immunotherapy or targeted therapies.

They can take 2-3 weeks to have results from these tests.

Congratulations on your birthday and it is good you have enjoyed some normal life.

Let us know how it all goes for you and 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

[sassassas]

Happy birthday Mags 👏. Sounds like a wonderful way to spend your birthday and Cornwall is one of the best places for great walks and great pubs! I'm sorry to hear you're struggling with the pain. My husband used naproxen when he was in pain - it was prescribed as its long lasting and it helped him get through the night. He could take it with another painkiller but I can't remember which. I hope you get your test results soon so you can get on with the best treatment.

Sarah x

[magstherunner in reply to sassassas]

Hi Sarah. Thanks for your reply and information. I see the oncologist next Tuesday so will ask about that pain relief. We did have a lovely time in Cornwall near The Lizard where we stay in a fantastic national trust cottage with direct sea views and a great local pub. We live in Dorset which is also lovely, we are very lucky. Hope your husband continues to do well. Mags x

[sassassas in reply to magstherunner]

Same to you Mags. Do let us know how you get on with your oncologist. xx

[Red58]

Hi mags thinking of you my scan show a nodule start grow stillOn immunotherapy and chemo have wait till next scan to see if any change I hope things go ok for you thinkin of you xxx

[magstherunner in reply to Red58]

Thanks Margaret. I'm hoping for good news but being realistic. Hope ypur next scan is positive. Mags xx

[Red58 in reply to magstherunner]

Hi mags how are you x

[magstherunner in reply to Red58]

Hi Margaret. Well I decided not to have the more aggressive chemo when they told me that the pemetrexed and Pemulizimab had stopped working as I considered that, as there was no chance of it curing my cancer and would likely have more troubling side effects, I would just try to have some good times without my head being down the toilet all the time!! We are trying to get away, been to Cornwall for a week and off to Devon for a few days next week. I can tell that my stamina is deteriorating; can't jog/walk the Parkrun now but that's OK I can still have a good time watching my husband killing himself running the hills! I've had a couple of overnights in A&E being terribly sick as they try to find a pain control drug that doesn't make me ill. I get quite a bit of pain in my shoulder and take oramorph at night which works well. As a result of my A&E experiences, I've also been visited by the hospice nurse at home and she is going to help me find some medication to help with the pain which is my main concern. I'm still going for gentle walks and doing housework etc, just pacing myself and not trying to do too much. I've always been a bit of a live wire but learning to be more measured. I hope your treatment goes well and is successful. Keep me up to date. Lots of love, Mags xx

[Red58]

Also Happy birthday mags 👍

[Red58]

Hi mags I think you made right decision I hope pain relief gets sorted out for you you enjoy getting away send you my love keep me posted how you get on xxx