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Post by Lloyd on Oct 20, 2017 14:42:22 GMT -6
Lumbar paraganglioma had bad back for 3 yrs finally had scan removed it but 10% left also the tumour had suspect cells? Any1 know prognosis ?
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dora
New Member
Posts: 1
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Post by dora on Jun 8, 2018 6:36:27 GMT -6
I have malignant ganglioma, diagnosed two years now, after several years of assumed hypochondria. I was 39. The primary was removed (on the front of the spine) with a follow up of MIBG (a year later due to NHS delay). Unfortunately MIBG had no effect even though it was taken up and the primary grew back. Now I have several tumours in my abdoman (largest about 12cm) and many in my lungs (largest about 5cm). Pain is a big problem hardly controlled with morphine, tiredness is another problem, partialy because I keep myself awake due to nightmares, where I wake from a bad dream to remember the real nightmare. the real problem is breathing and I am terrified of suffocating. i have been very fit my whole life but now can do nothing. I got married last year but then told my wife I hated her and wished she would leave. She did so and I am now without her. I do not know why I made her leave, I do not know what is wrong with me. I have never really even met anyone with cancer before (never felt the need) but I was looking at these posts when I saw the word 'paraganglioma' the word that haunts every minute. I am starting chemotherapy on thursday but I have been advised it will not work, what else can I do. I sat down on saturday afternoon and drank my oromorph supply ( rxpromocodes.com/pharmacies/drugs-1-com/) but ended up vomiting all over the carpet, it is sickly after the first glass full. I had a nice sleep but woke up to a lot of cleaning to do. I felt nothing when I woke up. I cannot tell the doctors because they would probably limit my access to morphine. A lot of people who die from cancer do not get the two years I have had. I am not complaining but life is not much fun at the moment. I do not know why I wrote this, maybe I felt like telling someone how i feel and need to be anonymous. Maybe I should not have written it.
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