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 The trial drug didn't do as well as the drug company had hoped so was withdrawn.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.
Time for an update I think.....SGN number 6 done, scan after 4 shows almost complete result! Yay!
We have now had appointment number 2 with Dr Adrian Bloor, they were looking for a 10 out of 10 point donor match, they have found her a 12 point match! A 43 year old German man, they like men as they have no antibodies from child bearing. Caz is trying to make up a name for him, Gerhard, Klaus or Wolfgang!
So we are looking, scarily, at admission first or second week of September......maybe planning a few days away on holiday, she certainly is!
Two years-plus ago, our daughter had that donor bone marrow transplant. It meant about a month in hospital, the last few days due to a complication as she developed an access from her syringe driver of anti-nausea med!
I stayed in her house so that each day I drove in and was able to help by being her 'advocate' and sitting with her in her isolation room.
After that a slow recovery followed with re-admission three weeks later after she caught a bug actually in outpatients! However she gradually gained strength although this went rapidly down every three weeks or so, due to low red cell counts. In the end she got to know immediately her count dropped below 9!
The Christie were very quick to act if ever she was unwell, had a temperature or needed anything extra, our only problems were with their pharmacy, like everywhere it seems, they were and still are, slow! She had an overnight stay a after a year, again due to a nasty virus which could so easily and swiftly have got much worse, the wait on her discharge was 5 hours purely waiting for take home pharmacy drugs!
Her work duly had to be arranged around her blood levels, which the Christie team began to find a little puzzling. Normally red cells recover quite quickly after white and platelets! She had a few treatments, nothing terribly invasive except for some Rituximab.
Then suddenly after yet another bone marrow biopsy came her clinic appointment in November 2013 to say she had red cell colonies!
So now there will be a wait, then a reduction of her iron levels needed to reduce possible problems. She cannot take the medication to reduce this as she had bad reactions to it. So they will wait till her red cells are happily being produced after a few months and then do a series of 'bleeding' so that her liver shouldn't have any damage due to the iron stores there.
Hoping that this blog might in time help someone else who is facing an allogeneic transplant. Good wishes!
We send a birthday card each year, of course, and it always has us stopping for a bit, thinking back and marvelling at how much she has come through in this long illness.
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Heartfelt thanks of course, go to Thomas who gave her a 'copy' of his immune system (bone marrow stem cells harvested from the blood flowing through his veins, a result of injections to make that happen) to meld with her and ensure that her cancer never reappears.
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Huge thanks too, to all the staff and especially Professor John Radford at Manchester's Christie Hospital, who never, ever, gave up on her.
