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 The trial drug didn't do as well as the drug company had hoped so was withdrawn.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.
We went to see her Professor on Monday, and the news wasn't too good, there are 'changes' in liver and Spleen, although the nodes aren't very much bigger in neck and chest. So a PET scan and a bone marrow biopsy have already been arranged for the 19th, she might need a node biopsy, but Prof wants to re-stage her lymphoma. There are trials that she might be able to get onto, one using an antibody plus radiation, which needs a lead lined room for 5 or 6 days, the other is an antibody and a toxin. It depends on her type of cancer which would be possible, the one using a toxin would need her to have had a course of Gemcitabine first.
To say we are angry, sad, hurting, disappointed, and all the rest, is putting it mildly....we were all hoping for better news of course ( we are a very close family). She is getting over the shock but is still surprised at the speed of investigations being arranged!
We of course will support her all we can! The ticking bomb is ticking louder, though.....
Sorry to hear about the news, Helen. We always do whatever we can and we always hope for the best for our children that all it takes is just such news and we are plunged to the depths of despair. I've been told before that with cancer we never know how things will turn out but your daughter is blessed to have the constant support of her loving family- no matter what.
Rachel, thanks for the reply, I think I have to some extent got over the shock, not too sure about daughter, she is down south working at the moment again, she might call in for a night if she is tired, tomorrow late, but might just keep on driving home.
We all feel that we must just keep going, and hope for the best, there are stories of miracles, one young woman she has been talking to in Australia, was being prepared for the last-ditch procedure to try to give her one last chance, a Donor Bone marrow transplant, she had been so ill she needed steroids to build her up a bit, then astonishingly went into remission! So maybe.....( I still hope!)
I do gain a tiny bit of inner calm by typing all that's going on, somehow, not too sure how it works, maybe in writing it down I help clarify it in my own mind. But I still feel angry, hurt and disappointed that all the amazing treatments out there haven't sorted our lovely lass!
Our dear daughter had a couple of weeks, with a cancelled tour, she had wondered whether to have a last minute holiday, has looked at all sorts of possibilities, and decided that the Pyramids is one place she'd love to see in case.....well, there weren't too many last minute good holidays, and then her house-mate and good pal's Granddad became very ill with this wretched disease, and although her pal urged her still to think about going abroad, she has decided she'd rather stay somewhere near, ready to support her pal, so she's going camping as near as she can, instead, bless her!
It makes us feel so very proud of our lass!
We still have a wait for the results, she says she'd like to have gone to the Pyramids, but will keep the idea in her mind to help her get through 'whatever they throw at me!'
Well, she has spread of her cancer into her Spleen, but not Liver or bone marrow. I had a long chat with her Registrar, by phone today since I wasn't able to get to clinic this time. He feels that her cancer is resistant to most of the chemo, and so has hopes that he can get her onto a trial at the Royal Free, which is the antibody with radiation trial. He feels she might not need too many tests since she has had a lot recently, but she might need to have a further node biopsy. All depends on whether the Royal Free will 'play ball' I guess. Her thoughts are that 'let's get everything thrown at it while I'm well'. He thinks she has reached the best conclusion with this and has already emailed the Docs there, so we wait yet again!
Her 'adopted' Granda ( since she hadn't ever known her own, he agreed to be hers as well as her pal's, bless him!) lost his fight but she was able to see him a couple of times while he was still able to chat a wee bit. He had been lovingly nursed in hospital in Northumberland
