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 The trial drug didn't do as well as the drug company had hoped so was withdrawn.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 had a tough time as she was thought to have swine flu, given Tamiflu and isolated in her hotel room, the rest of the tour went ahead with a gig without her, and then onto the tour bus off to the next venue, leaving her behind. It was reminiscent of her time in isolation after the SCT and she was so despondent, the hotel placed security guard outside her door, even! fortunately we both have the same type of computer and so were able to type free to each other for me to help keep her spirits up, she really had yet another rotten cough and a bit of a cold, the tamiflu is helping her cough 'loosen up', oddly enough. she has at last been released and is flying out now to re-join the tour.
So its been a long long weekend with me thinking of stuff to chat about to keep her spirits up, she gets 'down' quite easily if she feels lonely. am sooo glad she is now a bit better and able to get back to what she loves to do.
We duly went for an appointment at the Royal Free hospital (quite like down memory lane for me, as I spent 3 years training near there as an OT way back!) and were seen by the Specialist Lymphoma nurse, a lovely lady, who explained the procedure to us very well, and then by Dr Chris Macnamara, the clinical lead there in Lymphoma.
It seems the HL she has is indeed CD25 as well as CD30, whatever that means, and so may well respond to the latest drugs. the actual drug trial is between phase 1 and 2 but she could still have it, if the PCT is willing to fork out about £3,000 for it. They will immediately request that and hope that it will be agreed. It involves an antibody drug with a 'loading' of radiation which is intended to find the cancer cells and deliver the radiation to them. This will be administered as a 'one off' and then she will have to be isolated as she will be giving off radiation, harmful to others! There will be tests beforehand of course, one taken there and then, a blood test especially to preclude mouse allergy....and then PET and CT scans at 4, 8 and 12 weeks, with a weekly blood test.
There might be a need for transfusion if her blood counts get low, they have noted the most likely being platelets. the results so far indicate that out of the 40 patients, the best results are from the third who have slow growing cancer (includes our lass, so good!) the others show little to mild benefit, but of course this is a recent trial so longer term effects have not yet been found.
I have a contact with a scientist who says that this treatment looks very promising. He is happy to remain in email contact and is excellent at de-mystifying information! So, we continue hoping! she certainly looks well, improbably so!
We just heard today that her PCT has agreed funding so as and when she is ready and all the tests have been done, then the treatment at the Royal Free can go ahead! She hopes to fit it all round with the tour with Seal to Australia, which she can probably do, if all the dates are ok. she will need about 12 weeks in this country in case there is a need for any sort of transfusions, we all hope not but they have known a need for platelets with the 40 who have already had this treatment. Of course this might need some sort of Hickman or central line, hope not as there will then be a major problem, as that will stop her playing and working altogether! ( One cannot create any build up of pressure with a central line of any sort, so that will put brass playing out! )
We just heard today that her PCT has agreed funding so as and when she is ready and all the tests have been done, then the treatment at the Royal Free can go ahead! She hopes to fit it all round with the tour with Seal to Australia, which she can probably do, if all the dates are ok. she will need about 12 weeks in this country in case there is a need for any sort of transfusions, we all hope not but they have known a need for platelets with the 40 who have already had this treatment. Of course this might need some sort of Hickman or central line, hope not as there will then be a major problem, as that will stop her playing and working altogether! ( One cannot create any build up of pressure with a central line of any sort, so that will put brass playing out! )
We heard that the treatment can indeed begin after the Seal tour, as it is by now too late to get it done before....she will yet again need the usual battery of tests of course, but subject to those all being ok, the new treatment will start in November sometime.
