Hi, I just recently joined, having been on the 'other side', the Macmillan Share site, for almost a year now. Our lass, C has had lymphoma now for over 4 years, diagnosed 20th October 2004. she has had a great deal of treatment, all the usual 'gold standard' stuff, ABVD, ESHAPP, BEAM, Radiotherapy, nothing killed this stuff off so she had a trial drug at the Christie hospital, a 12 week once weekly infusion which ended in September 2006. Miraculously, ever since then she seems to have been relatively 'stable'. she is checked every 3 months, scanned every 6 months so she doesn't add too much radiation to her system. The trial drug didn't do as well as the drug company had hoped so was withdrawn.
C is remarkably well, following her career which is also her hobby! She has put on a bit of weight, being a very slim young woman, so that was good to see. She says that her cancer, like her, is obstinate! She had such a tough time with the stem cell treatment, the BEAM,( wanting just to die, she felt so ill) and wishes she never ever has to face a donor transplant, so was pleased when she was told of further trials for refractory lymphoma like hers.
We carry on waiting and hoping that she will keep as well as she is now.
My lovely daughter wanted to do this, this year, signed up locally but the date clashed and sio she changed venue and I'm doing it with her in Crystal Palace on Sunday, we both hope that money we raise can be earmarked for Hodgkin's research.
She was so fit when younger and had already signed up for the Great North Run only just before she had to start chemo, needless to say she had to cancel....but her aim would have been to do the Marathon, and all money raised then would have gone to Cancer Research too, it is a charity she feels very strongly about, in the hope that Cancer can someday be totally eradicated.
We did the race for life together, and walked round as it was very hot and dusty, 52 minutes seems a good time for 5k! She coped so well she wants to do 10k next......
We are still waiting to hear about the next trial, her old biospy has gone off for tests, lets hope it proves she is suitable! It gave her an anti-CD 30 trial last time, this one is an anti-CD 25 trial. I really do hope it means she can get onto the trial, but I'm afraid she's at risk of feeling rubbish with a high dose of radiation in with the antibody drug. And it will mean a lead-lined room for anything up to 7 days, how will she cope without her computer and her phone?
Ah well, what will be.....why am I so resigned? I HATE the thought of losing our lovely girl!
We have a Lymphoma group in my area, and yesterday had a Doctor who explained the new trials coming on stream now, very well, especially the type of trial we are hoping our lass can get onto. i felt reassured, as did our daughter when i explained it to her last night.
We both got up at 'silly o'clock' and i drove her down to catch taxi and plane off onto her tour with Seal.
Recently she has had a couple of blips when she hadn't felt well, but it is mostly due to overwork or excess stress!
I remain so very proud of our dear daughter, she has kept going with a tremendous energy and is also so supportive to her friends (and family of course!) whenever they too have problems or scares with this wretched disease. She's a star!
Our lass is coming to the end of a busy tour with Seal, when last heard of (this morning) was swimming in a gorgeous pool in Monte Carlo!
She has had a phone call from a Doctor at the Royal Free hospital, where we understand the new trial is about to start, but as she was busy and of course, abroad, they agreed to talk on August 3rd, when daughter will be home again. I am keeping my fingers crossed that the trial will be available to her and also of course that it will help and push her into remission at last!
