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hellyhead
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26-07-2014
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21-08-2017
11:32
What I put in the other thread was ...... Movetothecountry, hello, I wonder what you decided to do? I am meeting a trial researcher in Glasgow on Thurs to discuss entry to a trial as my first line of treatment for TN recurrence in a chest lymph node and lung. Exactly the same as you, it is delaying start of standard chemo which would be carboplatin and I could have been on it already.The trlal is for Pembrolizumab, which hasn't been approved for breast cancer yet but is used for lung cancer and melanoma. My tumour has been compressing my main vein to the heart, and I had a stent put in on Weds last week to protect the vein to give me time for any drug treatment to start working. I had 5 shots of radiotherapy to the tumour in June which helped for a few weeks but then the vein obstruction symptoms recurred hence the stent insertion. I'm pretty alarmed that I had this tumour diagnosed in June (although it's been there a lot longer!) and am still waiting to start any chemo/drug treatment - and worried by the length of time a trial drug might take to give me any tumour shrinkage - if it does at all! But of course there is no guarantee that the carboplatin or anything else will work either and the oncologist's feeling is that if I run through several chemos first then I might well be too ill or my disease too advanced for the trial, so they are recommending I give the trial a shot first. It's a really tricky one tho isn't it. The questions I want the answers to are whether the trial drug will give me longer survival and better quality of life than normal chemo.... but no one can answer that I guess and statistics are dangerous things! I hadn't heard of your trial drug Olaparib. I haven't as far as know been tested for the BRCA mutation. Be interesting to hear from anyone else in trials for TNBC or facing these choices. All the best, Helen
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21-08-2017
11:30
Hi, I have just posted about trials in the TNBC recurrences thread in Living with Secondary Breast Cancer since there had been a little discussion of trials there. Perhaps it would be more appropriate to put it here. It might be really useful to have a TNBC trials thread, there seem to be a few around and it would be great to hear other peoples' thoughts and experiences. I'm meeeting a trial director on Thursday - but would he know about other trials available or just push me onto the one he is running? How on earth do you make decisions about which would be the most appropriate one to go into? Helen
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21-08-2017
11:20
Well, have been browsing this thread and realised that it has only recently been resurrected from last year and there have only been 4 posts this year so not very busy but here goes anyway... Movetothecountry, hello, I wonder what you decided to do? I am meeting a trial researcher in Glasgow on Thurs to discuss entry to a trial as my first line of treatment for TN recurrence in a chest lymph node and lung. Exactly the same as you, it is delaying start of standard chemo which would be carboplatin and I could have been on it already.The trlal is for Pembrolizumab, which hasn't been approved for breast cancer yet but is used for lung cancer and melanoma. My tumour has been compressing my main vein to the heart, and I had a stent put in on Weds last week to protect the vein to give me time for any drug treatment to start working. I had 5 shots of radiotherapy to the tumour in June which helped for a few weeks but then the vein obstruction symptoms recurred hence the stent insertion. I'm pretty alarmed that I had this tumour diagnosed in June (although it's been there a lot longer!) and am still waiting to start any chemo/drug treatment - and worried by the length of time a trial drug might take to give me any tumour shrinkage - if it does at all! But of course there is no guarantee that the carboplatin or anything else will work either and the oncologist's feeling is that if I run through several chemos first then I might well be too ill or my disease too advanced for the trial, so they are recommending I give the trial a shot first. It's a really tricky one tho isn't it. The questions I want the answers to are whether the trial drug will give me longer survival and better quality of life than normal chemo.... but no one can answer that I guess and statistics are dangerous things! I hadn't heard of your trial drug Olaparib. I haven't as far as know been tested for the BRCA mutation. Be interesting to hear from anyone else in trials for TNBC or facing these choices. All the best, Helen
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11-08-2017
10:46
Seems quite an uncommon situation with breast cancer, more common with lung cancer, but I have a recurrence of TNBC in a lymph node underneath my ribs, to the right of my sternum. It's obstructing my main vein to the heart , superior vena cava, and causing uncomfortable symptoms of presssure in the head and neck. I had 5 shots of radiotherapy in mid June to shrink the tumour, which seemed to work for a few weeks, but the pressure is coming back again and now there is talk of inserting a stent to hold the vein open to buy me some time to get me started on some drug treatment, chemo or a trial. Currently just on dexamethasone to ease the swelling, but oh I how I hate being on steroids! Sore mouth, sore tummy, nausea, weak legs, awful side effects. Was feeling quite terrified at the thought of stent insertion but now I just want the pressure to ease and to get off the steroids..... Has anyone else ever had a stent? bit of a random question I know and I expect the answer to be a deafening silence!! Thanks Helen
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09-06-2017
10:08
Hi Bethy, wondering how you are and am hoping you got good news yesterday at your results appointment? Fingers crossed for you. Get my CT scan results on Tuesday... Helen x
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05-06-2017
09:07
Well, this thread is a couple of weeks old - and I hope you've got some answers by now Bethy - but I thought I'd add my two penn'orth anyway. I had a chest x-ray in Jan to investigate sternum pain, nothing seen. After increases in pain, which seemed to have spread to upper back, neck and skull I had a bone scan two weeks ago which showed a hot spot on my sternum. Now I'm having a CT scan to get a clearer picture of the spot which could be old injury or wear and tear? .... here's hoping! It seems from the other posts that a combination of the two scans is needed to give the full image. I didn't know this either and was a bit upset that I hadn't had a CT scan initially instead of the bone scan because I thought, like you, that that would give a definitive diagnosis. And of course the bone scan took a month, waiting for the scan appt and then results. So in some ways your post has made me feel a bit better that even if I'd had the CT scan first I might still not have got any answers sooner. It's a horrible time though isn't it, and I'm very on edge and short tempered with my poor demented dad. Wishing you all the best. Helen x
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01-05-2017
12:23
Hello Lou, I was just passing by - have never posted before but have been reading/lurking for a few years. Your post touched me and I just wanted to say that when I had taxotere/docetaxol the bone pain was very bad, and I think it is the same for most people if not all. Before BC I never took painkillers, but with the docetaxol I kept on top of it with regular medication, codeine and paracetamol. Ask for some relief when you go back to hospital. I hope you are a little bit reassured. It is horrible but the chemo pain will pass. I'm not diagnosed with secondaries but waiting for a bone scan to find out! So I know about the anxiety and mind games and consequent ups and downs.... One day I'm planning my funeral and the next I'm sure it's just a stiff neck. It's not much fun and hard to be positive. Take care, hope you are feeling a little better today. Helen
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