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 The trial drug didn't do as well as the drug company had hoped so was withdrawn.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.
Ahhhh, yes, we are so very proud, both of the way our lass copes with her illness, and also with the fabulous contacts and concerts and gigs she manages to do, the teaching at a conservatoire she fits in, and also the writing and arranging of music she does too, some of which can be heard on Seal's newest CD!
we know that she will have yet more chemo in November 2010, and although she is (as are we too) dreading the thought, we all also hope she can go ahead for a Donor Bone Marrow Transplant. It now is her remaining chance of long life.
Well, it's high time I updated.....Caz has been having Gemcitabine since November 2010 and the scan in December showed it to be helping, the very resistant node in her chest had shrunk by almost a half, the one in her neck by about a third and her spleen is again clear. We were simply astounded that at last something seems to be sending her the right way!
So Prof has referred her for a donor transplant. We have now met the specialist Dr Bloor and he is already on the look out for a ten point match donor. We simply don't know how long it will take but assume she will need to continue treatment until transplant, if the Gemc stops working it will need to be SGN35 which her Prof has already got one patient on while waiting for transplant.
Poor Caz is dreading feeling so ill again as she did with her own SCT and is anxious to try anything to prevent that but knows she has to go through with it! At least during this last 5 years all treatments have improved, anti-nausea especially so.
Work has recently taken a back seat and she fears will continue to do so, she has kept 'clashes' in her diary rather than sort them out, knowing in her heart that a tour of South America for 3 weeks isn't really on the cards! So I'm afraid a disappointed girl will be the result next time she sees Prof Radford, but I suspect she will have already heard his reply in her mind anyway!
Latest news is that Prof has stopped the Gemcitabine, her bloods were too low to have the remaining doses of the fourth course, she will have a PET scan after 2 weeks off it, then she has been told she can indeed go to South america on tour with Seal for 3 weeks, and on her return she will start SGN35 to carry her through to when a match is found.
She is thrilled she can go on tour, has been hoping it might be possible but kept other things in her diary in case it couldn't happen....
Hi Helen - I'm sorry that C's bloods were too low for her to continue on the Gemcitabine... But I guess that her Exciting trip to South America is just Meant To Be!!!! She must feel soooo excited about that!!! It sounds like it will be a Fabulous tour with Seal!!!
Where will her SGN35 treatment occur?
What a roller coaster ride this has been, and continues to be. C is really an inspiration!!! Nothing stops her - or even slows her down. She is amazing!
