I don't know what "current study" you're referring to k6ristin, but to make everything clear: I personally am in no study at all, not in CARE-MSI, CARE-MSII or any "fertility study". I did the Campath thing off-label, because I wanted to have kids and I would have to promise not to try to get pregnant for several years if I would have participated. And I did not want to be a "false" drop-out, that would not be fair considering the importance of the results for all of us MS-sufferers.
ssmme, you are very right to say that it should be thought through very well. I personally have no disabilities whatsoever, so I'm not considering myself to be less equipped to care for a baby or toddler than any 'healthy' person. We also all know that anything can happen to anyone, healthy or not, no one has any guarantee that he or she will be there for his or her kids in the future...
As to taking the decision to make a baby after Campath, I couldn't find any foreseeable complications. CD52 is found on sperm cells, but not on eggs. Whether the DNA could get affected (or mitochondria in the egg) is not known, but the mechanism would be very obscure. How can an antibody get to the DNA?? Remember, Campath is an antibody, it is not "toxic".
Anyhow, we decided to do chorionic villous sampling to screen for any chromosomal abnormalities. There weren't any found, and our baby turned out to be normal too (genotype normal, phenotype normal). There were also numerous high level ultrasounds done at crucial developmental milestones. We had decided as a couple (with already an MS-patient) to do these extensive prenatal tests because we were sure to terminate the pregnancy if there would be a major birth defect. One person with a disability in one family was enough. Everyone has to decide this for themselves (if you would keep it anyway, it's no use to do the prenatal testing).
As for all other birth defects that can't be diagnosed before birth, we decided to keep faith. Birth defects occur with perfectly healthy parents too, nobody knows what caused it. If our baby would have anything wrong (or maybe there is already something wrong but it will manifest itself in the future...), who would say that it was due to Campath and not just bad luck?? You would need very large studies with years and years of follow-up to have any statistical value, but I'm living now and I had to take my decision now...
As for my kid the same question rises as with all parents: would it rather not exist at all, or would it prefer to live even with some major or minor defects??
As long as there is love....
Anyway, I have no idea whether the Genzyme people are interested in fertility for the moment. I suppose they're concentrating on the disease outcome now, not on other, personal aspects of patient's lives. For example, it is not known whether Campath gets into human breast milk. It's an IgG1 kappa, and other maternal IgG-antibodies are transferred. So one supposes that it gets transferred too, but they don't know. I myself have been breastfeeding up until the first infusion of the second round, and I have expressed my milk for several days afterwards. I offered Genzyme to provide them with my milk for research, but they don't seem interested. It doesn't matter to them...
But it does matter to me and to my kid, because breastfeeding is protective against MS for mother and child. Well yeah, there is no money in it for Genzyme I suppose...
BTW, bromley once wrote me this:
(
http://www.thisisms.com/ftopicp-37736-.html#37737)
bromley wrote:
JP,
Yes you should talk to your neuro. I know that at Cambridge there have been women who have had the two doses and then become mothers. I was at Cambridge recently when one of the Campath patients brought in her baby to show the nurses.
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