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Thank you for the positive messages. Ollie, realised we are already 'friends' on here. Thanks for such a lovely, positive post. I may pm you to see how you are doing if that's ok?
Sandra, my heart goes out to you. Just feel the despair in your post. Why did your GP tell you that? Did you ask? I certainly don;t want to know any stats/prognosis as we're all individual. I just feel for what you've been through and what is being thrown at you. it is terrifying. I have changed my diet to oestrogen free as being TN we can't have hormone treatment but a lot of that is to stop oestrogen so we can help ourselves a bit that way.
I'm surprised they have given you a timescale like they have considering you haven't even got your treatment plan. I was told there are lots of different treatments for us that they will try and that it's like a chronic illness that just needs ongoing treatment.
hearing things like you have are bound to scare the absolute sh** out of us and I know it's not great being TN BUT you do hear some positives and as someone said to me, you don't hear a lot of positives as people don't often post.
I can't believe I am being so rational today but I just feel so upset for you and I get fed up of Dr's and Onc's making us feel worse. We are human beings not a stat. Someone on another thread said they had read about TN ladies with secondaries doing well after 4,5,7,8 years so we just have to keep this in mind to not drive us mad. I am trying to focus on these things but have very down days too.
If you want to message me, feel free. I'm sure you will feel calmer once the shock has worn off and you feel more up for a fight :) Sending you lots of love and big hugs :) xxxxx
Have just read your post I am so sorry about you and your son, how unlucky is that, do hope he is doing ok.
Cannot believe the dr left you so long thank heavans you have had some chemo now, how awful for you at the same time as your poor son.
There is so much that can be done of today, I am sure they will be able to help you, there are alot of ladies who have had bc and lung secondaries and are still going strong, also cannot believe dr gave you a time scale that is very unusual as they just don't really know, but am sure you are going to be here for your sons for along while yet.
Not sure if you read my post, but I have secondary lung cancer from my bowel, I did feel it was the end at first but don't feel like that now, feel as if I have a chronic illness that they ca control.
Do keep coming on here for support, they are a great bunch of people on here.
Let us know how you get on.
Love P am x
Love the name , same as my little grandaughter.
Your welcome, like to keep positive as am sure it helps, you are welcome to pm me be lovely to hear from you too to see how you are doing.
Me and hubby had lovely time at our caravan, was a bit hot though.
Take care ,
Love Pam xxx
I am triple negative, too. Inflammatory breast cancer. Have had a course of a variety of chemos - weekly in the finish together with radiotherapy then mastectomy/lymph nodes in early June.
Yesterday morning I looked in the mirror and for the first time in a year I was able to look at myself and think 'hey, normality here'! My hair has changed totally but it has grown enough for me to look human again and my face has stopped being like a round pudding (after all the steroids??).
I've been determined to get back into my life and build my life back up again and to regain confidence and self-esteem - a good start made and I was giving myself a pat on the back for the determination producing results...only to be told I have raging lung cancer and that there had been a shadow a year ago on a CT scan which nobody had mentioned nor looked at since. If the chemo had any effect at all, once it stopped, the cancer raced away.
They had been very dismissive at the hospital when I explained a couple of months ago I could feel something travelling down into my lungs and making me wheezy -antibiotics, inhaler, that's you sorted and we don't need to see you again! I had to cough up blood (which was what was travelling around in my lungs) before anyone sat up and took notice. Even then I probably would have thought nothing further - to avoid the dismissive attitude again! - but I was in an environment where another doctor sensibly insisted that I at least request an Xray at the surgery.
I could tell that there was something more serious afoot after the CT scan - there were a couple of nurses lined up sitting directly opposite me on the couch as the surgeon began to speak. I said I could do without the audience!!!!! I wouldn't look at him while he was speaking - I said just that 'I'm listening'. It has been a shock. So unexpected and apparently not at all what they expected to be saying to me either. I've been so well since the surgery - and happy too. Now suddenly everything has become pointless again. I knew how to live with breast cancer. I don't know how to 'live' with this at all. Not that I've got much time to live. A year? Less without treatment. He wouldn't look me in the eye as he spoke so I know there was some lying going on!!!! ;-)
Most of the time I keep thinking : how can I do this to my son? I'm almost 60. My late 50s were taken up with elderly care, a very stressful time, but the last ten years have been stressful and unpleasant. I wonder why my life has to end on a downward spiral and my son (who has Aspergers) abandoned. I don't have friends where I live as I moved here not knowing anyone and the chemo started almost immediately - and who would want to befriend someone who is going to die??!
Generously, fate gave me a gift the day after the news in the guise of a lady who delivers my parcels! She knows something about lung cancer and gave me some hope.
I see the oncologist today.
Rosie i am sorry I didn't see this post until now. I was having chemo the day before it was posted (my daughter's 13th birthday) and I've been a bit under the weather since. I was told I had months to live on 29th September 2011, but I don't count that time, because I went on a trial and my tumors shrunk for a while. When that stopped working (May 2012) my prognosis was "before Christmas" (2012).
I've been feeling pretty down lately. I've made funeral arrangements, and also for my daughter to go live with her Father in France. Now it turns out he has had a scare too with an 8cm tumor on his kidney. They've removed the whole thing and they said there appears to be no spread, I really hope so.
I hope your parcel lady can help you. My friends are there for me.
Hi LesleyK - Thank you for replying. I've been told I can have chemo in tablet form this time but I have no idea whether it is worth it. I don't want to live the remainder of my life with chemo brain and feeling ill all the time. And looking awful. Stamp, stamp! ;-)
What was the trial??
It seems that the cancer has spread 'all over' I guess they mean all over my lungs. And if it's moving at such a rate then it is linked to the inflammatory breast cancer which didn't respond to chemo anyway. Thank God for radiotherapy tho I recognise they can't keep on using it They tell me that everything will just slowly shut down.
I wonder about Dignitas but I don't think I've got the nerve. Mind you Michael Winner in the papers today made me laugh. I've cut out what he said and I'm sticking it on the wall. I think a little black humour is what will get me through.
I'm so sorry about your daughter - the real pain I feel is about my son. I'm usually Mrs Blabbermouth but for once, I don't intend to tell him until much later. Let's have a bit of normality in our lives for a while.
Hi again, the trial was AZD 5363, it doesn't have a name yet. It was the first test to see what dose most people could tolerate. I believe nobody could take the initial dose, so we went down to half strength. I found both those doses helped me (because the cough was less), but as my intestines are sensitive now because of radiotherapy, I had to go on a lower dose again, which unfortunately did nothing, and the tumours grew larger. On a Trial once you have been lowered twice you are off. I was only lowered twice because of the initial shrinkage, which was totally unexpected. It happened to one other lady who had cervical cancer (also Squamous Cell Carcinoma like my anal cancer), so now I am being treated with chemo for cervical cancer to see if that works! (Confused? You will be.)
Do you have the cancer in your Mediastinal lymph nodes then? It sounds like it.
I don't know what Dignitas is, I'll have to Google.
Aaah Dignitas - I get it now.
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