Fertility

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Fertility

Postby k6ristin » Tue Dec 29, 2009 2:52 pm

Anybody heard results on female fertility and campath? sorry if i've asked before. I'm not getting any younger! Thanks.
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CAMPATH

Postby leetz » Tue Dec 29, 2009 9:04 pm

NOT SURE ABOUT FERTILITY...did you get campath????I did like 4 months ago...i have NOT seen any change as of yet...

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Postby k6ristin » Wed Dec 30, 2009 10:16 am

2 treatments. my study was to include extra blood draws that also looked at fertility in men. i opted out of the extra blood draws, but am anxiously awaiting publication of the results. month 24 ends the study, but the blood draws will continue. from what i understand there will be an extension and i can get another dose, maybe. i don't think you'll notice anything, as the study requires birth control. but somebody somewhere might have had a mistake and had a baby, so i'm looking for those people :)
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WILL KEEP

Postby leetz » Wed Dec 30, 2009 6:05 pm

will keep my ears open...let you know if i hear anything...have you noticed any gooood changes since the infusions???

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Postby LittleLisa » Mon Jan 04, 2010 5:06 pm

I know there was a girl in the Campath trial, at my doctor office, that recently had to be pulled from the trial because she got pregnant. I don't know for sure, but I don't think that Campath dramatically changes fertility, but they made me sign a paper that said I would actively try not to get pregnant for 5 years (the 2 years of Campath and 3 more years after that). I think that there is concern that this drug could cause major birth defects, potentially for years after it is taken. I know that Campath does mutate sperm, so men have to agree to actively try not to get anyone pregnant, also.:?
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fertility

Postby k6ristin » Tue Jan 05, 2010 9:05 am

so can you bug your doc to see what happened to her? did she keep the baby, is it ok, etc...
i also agreed and signed not to get pregnant, but still....
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Postby LittleLisa » Tue Jan 05, 2010 3:43 pm

I believe that she only found out that she was pregnant at the end of November, so it will be a few more months until anyone knows if the baby is okay.

Have you talked with your doctor about all of this? It seems like that would be a good resource. Even if he or she does not agree, your doctor probably knows something about how the drug would affect your fertility and what they have seen related to birth defects. Most doctors talk to each other and share that kind of thing, especially doctors working in clinical trials.

I will ask at my doctor at my next appointment also. It is on 1/11/2010. I will let you know what she says.

Lisa
Last edited by LittleLisa on Wed Jan 06, 2010 11:50 pm, edited 1 time in total.
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fertility

Postby k6ristin » Wed Jan 06, 2010 8:49 am

of course. the response: no data on it yet. and the fierce reminder not to get pregnant. sounds scary! no data even on cancer patients. i did get word on the extension study--that i qualify and cannot get it sooner than month 24 (2 more months). having a flare up right now so i thought that might be an option, but genzyme says no.
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Postby JP » Thu Mar 11, 2010 6:40 am

Hi,

I'm typing with one hand now, holding my 2-month old sleeping baby in the other :D

I have decided to get Campath off-label because I wanted to have kids during the study time. I got my first round of Campath in 2008, conceived 13 months later (after blood was more-or-less ok, but did not conceive right away), and now I do have a perfectly healthy baby :D :D

Pregnancy was not without complications, I had CVS testing done, I went into premature labour because of a bladder infection, and in the end it was a breech position, but all of those things have got absolutely nothing to do with MS or Campath!

I just had my second round of Campath now, so far so good...
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fertility

Postby k6ristin » Thu Mar 11, 2010 10:11 am

thank you so much!!! without this website, we would have no idea on these things. i appreciate your input! my OB Gyn had no idea and did not offer any advice, helpful or otherwise. and to be in the campath study had to promise to not even try.....have to take birth control!!

thanks again!
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Postby ssmme » Fri Mar 12, 2010 10:58 am

Please, please think it through and weigh all options and "what if" outcomes. This is about your life, your health, and the life and health of a brand new human being. I don't know of anyone who has the answers for you because it seems that the campath people don't want to even approach this issue.

I am so glad you are asking questions though. I would send a letter or speak to someone at Genzyme to see if they have any stats about pregnancy outcomes from other campath patients whether ms or cancer. I know that the cancer patients get a much higher dose but the outcome may be from exposure and not necessarily from the dosage of exposure.

If you find anything out I would be interested in what they say.

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Postby k6ristin » Fri Mar 12, 2010 9:54 pm

it's clear to me i can't chase after any little ones right now. but fertility raises lots of questions: what if i find something and get better? at what cost? i'm venting that there has been no data on this; until now, this current study. i look forward to the results.
maybe i'm feeling a little guilty for opting out of the fertility part of this study.
why did they wait this long to look at this?? even with the B cell lymphoma patients.

i spent 2 hours this evening in the MRI machine for my month 24 check up.

Lots of different factors to consider before accepting the 3 rd dose. Thyroid sometimes low but still normal. Thoughts of "Grumpster" getting ITP. I'm not "disease free" like the study is going to say most are.

There is a new theory on the cause. Exciting times in MS. People doing things off label don't make it into the study data. The internet provides the missing link: anecdotal evidence. To be taken with a grain of salt :)

i'm hoping for more healthy baby stories, even those from cancer patients.
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Postby JP » Sun Mar 14, 2010 8:58 am

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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Postby ssmme » Sun Mar 14, 2010 10:48 am

JP,

I'm glad you did your research first. This is the type of info I wanted K6risten to find out. Who did you talk to to find out the biological aspects? This is info that all campath patients should have access to.

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Postby JP » Tue Mar 16, 2010 12:34 am

I've traced down and read all of the articles about the biological aspects of campath myself. I have also several medical doctors in my close surroundings, who I discussed my plans with extensively (some of them read a few articles for me too, so we had the same info to discuss).

I personally think you have to be on such a level to take decisions of that importance, certainly if you're going against the grain. I would not trust anecdotical "evidence" (although it's nice), and I would not fully rely on some companies representatives. A company will always play safe, they can't take bad publicity now.
But it's my life, I am not just a "case" contributing to their statistics. I want to fully live my life in the best possible circumstances (minimal disease progression) and with kids. I am a person, I'm not a number on a paper...
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