I’ve just come from my appointment seeing my oncologist having been told that I have run out of treatments, also been told a lymph node in my chest has grown and is now pressing on my laryngeal nerve causing my horrible voice!
Everything is now pinned on my appointment at Christies to see if there’s a clinical trial that I’m suitable for, if there isn’t then it seems that’s it. I feel so helpless and also that having five plus different treatment has penalised me from other treatment that might’ve helped.
I don’t know what to do,what to think, I’m just in a spin and can’t stop crying, but am so angry at the same time. I feel quite well considering but it seems so unfair.
I know how I sound but this is me sounding off and I will get my head round things I just feel like I’ve punched in the chest!..sorry
Hello amberkitten, I really don’t know what to say to you but couldn’t just read your post without replying to you. I hope being this time of year you don’t have to wait too long for your appointment at The Christie? It is a good hospital and I really hope they have something to offer you. Please keep in touch with the forum and let us know how you are, sending hugs and positive thoughts, Kate x
Sorry that you have been given such awful news. Hope you get hear from Christiies hospita soon. Does oncologist have to refer you to be put on a clinical trial? Just asking in case sometime in future I am in the same position as you.
You are quite entitled to be annoyed and frustrated after the news you have had. Please let us know how you get on.
As the other ladies have said I’m sorry to hear there are no options left available but do hope the Christie has a trial that will benefit you. A truly difficult time for you and no wonder you are sounding off but that’s what we’re here for.
Thankyou ladies for your kind words At the moment I’m in between bouts of crying, panicking and I have a knot of pure terror in my chest at what the future holds.
To try divert myself to something more posisitive I’ve been trying find out what trials Christies have at the moment,also Xmas wrapping,cake decorating,laundry etc. All on automatic and flitting from to other as I can’t concentrate on anything.
My cancer team are from Weston Park hospital in Sheffield but I feel so frustrated as I don’t believe they have exhausted every avenue and are just following set treatment protocols, and don’t challenge what drugs can be tried in different cancer scenarios because they are not licensed! Makes my blood boil ITS NOT THEIR LIVES! I feel that maybe not all oncology teams are striving to find new treatments and challenge NICE guidelines.
Okay it’s time to put away the soap box and get a grip on things, I’m just a person who needs to have something positive to cling to in order to function and a need to have an occasional rant at the universe…and a deep pillow to scream into!!!..Again thankyou ladies for listening? To my ranting x
Ask if there are any drugs not approved by NICE that you could try. If you need to, you could always set up a go fund me page. I’m not talking about snake oil, there are drugs not available to us down to cost or lack of UK trials.
The Christie hospital is fantastic. Have hope that they will be able to help. I hope your appointment comes through very quickly. X
Also, try posting on the American inspire.com website with a list of drugs you’ve already tried and ask if anyone is aware of others that may help. They are ahead of us in this area.
I agree with everything the others have said and it ain’t over yet! Look on Breast cancer.org community an American site I frequent a lot. The ladies on there usually list their treatments in chronological order ( something I think would also be useful on here) find a thread with your kind of cancer and look at what they had. Also some of the oncologists in the states seem ok about repeating a drug that worked on the patient at one time previously, so go back to it.
Keep fighting, put a rocket up your oncologist backside and refuse to leave until you get a new plan in place!!! You’ve got this girl… come on… we are all behind you.
Ladies you are brilliant thankyou so much for your words of support and advice, much more useful than tears (although they do break through occasionally ) it is truly heartwarming to read some of your messages. I am determined to try and enjoy Christmas and might even get a little tipsy…god help the turkey!
I wish everyone a Happy Christmas and a peaceful New Year…and many more to come!
This won’t help you but may just give you food for thought if you are offered a drug trial. I was diagnosed straight to Stage 4 in 2013. It mutated in 2016 and I was put on a drug trial at a big specialist hospital in central London, under an eminent Professor from the Institute of Cancer Research. The oncology team were delighted and pronounced the treatment a great success. This was because of the effect it had on the tumours. The effects on my day-to-day health were ignored but it has been a miserable time. Eventually, in August of this year, I had “the discussion” with my husband. I told him I wanted to give up treatment. I’ve posted about this elsewhere. At the time of the mutation I was like you - terrified and angry - but I really regret the drug trial. Yes, it may have prolonged my life but I had to decide if it was a life worth living. I’m in substantial chronic pain every day, I walk with a stick, I can’t breathe properly - all from treatment. Since my decision, life is better because I now have “comfort and care” from a hospice team and see fewer doctors. I don’t have to drag myself to various appointments when I am physically not up to it. Like most people, I don’t want to give up - I won’t see my grandchildren or get to travel with my husband but cancer treatment won’t cure me. But it does make daily living a struggle. My husband weeps when he sees me in so much pain so I try to hide it. He doesn’t want to lose me but he was exhausted from looking after me. At least now, free from the drugs, I can think clearly and we can have proper conversations which we’re really enjoying.
So while I understand wanting to get on a trial - the diagnosis is so terrible and frightening - do weigh up the options. It may be worth it. Only you can decide. But my advice would be to ask difficult questions, perhaps get some counselling and an informed opinion before you decide. You may also feel more in control. I found it was the lack of say over my own life which made me most angry. I’m much calmer now.
I’m so sorry you had a bad time on the trial and thankyou for giving me the ‘other side’ of the picture, it sounds from the tone of your post that you have made a decision that you’re at peace with and I hope I can have some of your strength and serenity when the time comes for me ( as I know it will).
I suppose that when the doctor told me I was out of treatment options and that the Christie referral was basically my last hope that I did panic and I never considered that there was a negative side to the trial option I just clung to any glimmer of positiveness
I agree that feeling you have no control over what is happening to you is one of the worst feelings about this whole horrible deal and one I find soooo frustrating, I despise feeling so helpless!
Again thankyou so much for taking the time to reply to my post and I really appreciate your honesty about the side of the clinical trials that dont always have a good outcome. Dawn
Em…? I thought I had only responded to Butterfly when I said I wish the same for you - meaning peace and comfort - whereas I realise it sounds like I think you should all join me in giving up treatment- which I most certainly don’t. Sorry! Dratted social media - I’m rubbish at it.
At the moment I’m in between bouts of crying, panicking and I have a knot of pure terror in my chest at what the future holds.