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 The trial drug didn't do as well as the drug company had hoped so was withdrawn.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.
FormerMember
What a ride you have all been on Helen.
Keeping fingers firmly crossed and sending you all some hugs,
Hi, Sisters....the SGN35 will begin at the start of April, when she will also find out how well the Gemcitabine has helped too.
I suspect the donor transplant will slow her down for maybe up to a year :( poor kid! But if it works, then as she says, in the greater scheme of things, what is a year?
Aaawwww Helen - Caz's Positive Thoughts will definitely help her again - as they've helped her so many times throughout this struggle. And it seems that nothing will slow her down. She is living her life to the fullest and experiencing more than most people experience in many lifetimes. AND she has a Brilliant Supportive Mom behind her, supporting her all the way!!!
SGN number 2 was yesterday, Caz feels fine, went straight off to the Trafford Centre for shopping and a ride on the dodgems! Her neck node and the tiny one next to it, feel sore and painful at times, but this is apparently ok, says her Prof.
My condolences to Linda, Kate and the rest of the family, Bob was a truly great man
Bless the girl (woman of course!) she is now in Estonia till Sunday, rehearsing with Seal again.....she will be flying home for the next treatment, flights already arranged, she now has chauffeured car to and from the airports (nice to be that well thought of, lol!) but will probably need to arrange another trip or two back for scan/treatment while on this 7 weeks of tour.
I took her to SGN number 3, she should have a scan sometime after it to see what the chest nodes are doing, we already know the neck nodes are going down.
The British Bandsman coming out now has her on the front cover, with a lovely interview by her old schoolfriend and pal who is temporarily the editor! Small world, the Brass one!
