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Hi there,

I'm a 24 year old woman about to undergo cyclophosphamide treatment for my SLE/scleroderma that has been complicated by pulmonary arterial hypertension. I'm wondering if anyone has any experience with freezing eggs or embryos before treatment in order to be able to have children later on. I found one organization that helps patients that are undergoing chemotherapy to treat cancer, but I was wondering if there are any to help patients with other diseases. I'm also interested in knowing about anyone's experiences with fertility after cyclophosphamide treatment and if anyone has gone through the IVF process in order to preserve their fertility.

Thanks!
 

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Another option often offered to help preserve fertility is to use Lupron shots to put the ovaries into an inactive state, which usually spares to ovaries from the chemo shutting them down. It's not a guarantee though, so retrieving eggs now to save them for later would probably be a good idea since it sounds very important to you to keep the possibility of having children later available to you.

I cannot recall another user that had eggs saved/frozen for future use --- or IVF following chemo treatment; hopefully if there are any they will see your post and reply. Good luck to you and hope the chemo helps you and you'll successfully manage a way to have a baby later when you are well.
 

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I have no experience of this but I just wanted you to know I care about what you are going through. I really hope it all works out for you. I can fully see why you want to explore every option. I wish you Success!
x Lola
 

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Hey there!

I'm 23 years old and I've had quite a bit of cyclophosphamide during the past year and a half for my lupus and aps. At the beginning my rheumy mentioned I could freeze my eggs but we had no time to do it before the first dose as it was pretty urgent and from the first dose on there was a chance that the eggs would be mutated and thus non-viable at least for 6 months down the line. The doc had mentioned though that egg freezing isn't as successful as embryo freezing (if that's the right word for it) and that he normally recommends that his patients do the latter if possible before the start of treatment. Has your doc talked to you about that? Is that an option for you at the moment?

I was also meant to receive a type of fertility sparing injection (like lupron) every month for the duration of my treatment with cytoxan. Lupron and fertility sparing injections given during chemo basically tell one’s hypothalamus to tell the ovaries to stop producing estrogen. Thus one’s estrogen’s levels drop dramatically, the circle is disrupted and menopause-like symptoms arise. Now the theory behind this is that by lowering one’s oestrogen levels and causing the disruption in one’s circle one’s “immature” eggs that are still in the ovaries will remain relatively protected from the toxic effects of the chemo. As far as the mature eggs are concerned, you should keep in mind that cytoxan causes birth defects not just if you happen to get pregnant while you’re on it but for a period of 6-8 months after you stop taking it. That is because the mature eggs in your body that will be exposed to chemotherapy may have damage to their DNA after treatment.

I had very long discussions with my rheumy and with my gynaecologist about the lupron injections and I suggest that if lupron or a type of fertility saving injection becomes an option for you, that you do the same. My rheumatologist was adamant that I take the injections, but my gynaecologist was very much against them. I talked to both and understood that there is not yet sufficient evidence to prove ovarian suppression works in preserving the fertility of women undergoing chemotherapy. My gyn told me that he’s seen women get their periods back and go on to have kids after high dose chemo for cancer and that he’s also seen women not get their periods back and go through menopause that went through low dose chemo for a short period of time. Like many things in life I think what happens is somewhat not predictable.

My gyn said that he believed lupron for me would cause major "artificial" hormonal upheaval in a body that was already under attack from disease and from the chemo itself. He said that he thinks it's much better for one's body that menopause be allowed to come "naturally" from chemo by the destruction of one's eggs if that is what is meant to happen (i.e. judging by the number of mature and immature eggs one has, their age etc etc) or that the body be allowed to "fight" menopause itself and then recover from the effects of cytoxan by itself. The choice is an incredibly personal one. I chose to listen to my gyn and not take the shots or freeze any eggs, but that does not mean that that is the right choice generally; it was simply the right choice for me at the time.

Ah! By the way one factor here is very much in your favour. Because you are very young chances are you have tons of immature eggs in your ovaries so no matter how many eggs cytoxan damages, there is a very good chance that when you’re done with your treatment your ovaries will recover and begin producing viable eggs once more.

Here is a link to a website with a lot of information on chemotherapy and fertility (the main site is about breast cancer but the info is still very good as we get some of the same meds just lower doses really):

http://www.breastcancer.org/tips/fert_preg_adopt/fertility/chemotherapy.jsp

Do talk about this with your docs and if you’ve got some time before you have to start cytoxan, try and talk about it once more with them and talk to that organization you found so you can make an informed decision!

Hope everything works out very well for you and that your new treatment goes extra smoothly and helps you loads! :)

Zoi
 

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Cyclophosphamide can DEFINITELY cause premature menopause, it happened to me. So, take all the precautions you can in terms of protecting your fertility. I was lucky, and I had already had completed my family, so while the premature menopause (more correctly premature ovarian failure, or pof) what highly annoying and rather distressing at the time, it wasn't really the end of the world.

Definitely ask what can be done do protect your fertility if children may be in your future and seriously consider following the advice given. With men, they can just bank some sperm, which is a lot more simple. Unfortunately for us, our eggs don't survive thawing unless they are fertilized which is a much bigger thing to do.

If you do maintain your fertility, then personally I wouldn't bank on it lasting as long as other women who have not had the treatment. I know of women who have chemotherapy, didn't go into pof imediately, but then further down the track when into menopause much earlier than expected. I don't have any statistics to back this up, I just know a bunch of people this happened to.

Best of luck with it all - I had my first cytoxan in my early 30's, so at 24 you have a greater chance of protecting your fertility as the older you are reproductively the more likely you are to loose your fertility. In women in their late 30s the rate is pretty high, I was sort of in the middle zone, but as I say I had completed my family so it wasn't such a big issue for me.

I am so glad that you are thinking about this now - so many people don't even know that this is a possibility. Best of luck with it all

raglet

btw, my feeling is that cyclophosphamide itself causes major hormonal upheavals, so personally I wouldn't rule out lupron based on hormonal upheaval. Most women have major menstrual disruption while on cyclo (they stop menstruating) so what else is that but major hormonal upheaval ? Also, some women go into temporary menopause with cyclo (again major hormonal upheaval) which remits within one year, if it is going to. But then, getting your period back is not always the same thing as getting your fertility back. I got my period back after my first round of cyclo, and lost all my menopause symptoms but my fsh never dropped below 80. It needs to be 12 or below on day 3 for conception to occur.

cheers
r.
 

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Indeed you have a point Raglet! Cyclophosphamide causes huge hormonal upheaval by itself, and indeed some women lose their fertility on it and some women have cycle disruptions on it, some women become temporary infertile on it etc etc. I guess what I meant to say but probably didn't explain very well was the gyn's argument was that since the evidence is somewhat lacking and it's not really been proven that lupron does indeed preserve fertility during cytoxan why make your body go through another hormonal upheaval (on top of the chemo etc) and put it through an artificial menopause with menopause symptoms etc etc whilst by being on cyclo alone fertility and the cycle may not be damaged? He did show me studies etc for lupron and when I talked to my rheumy next he himself said that the use of lupron is indeed controversial during chemo as they don't have good results. On the whole I wasn't convinced lupron works in the slightest; that was the reason behind my not taking it. Though a month or two into cytoxan though I was diagnosed with aps, so couldn't have lupron even if I wanted to after that!

Zoi
 

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I too am undergoing cyclophosphamide treatment, nearly 30 years old. Taking the injections to protect my overies which have no felt side-effects. I was told that IVF is not an option for people with SLE as it involves too many hormones, freezing eggs was not an option as the treatment had to start quickly. Hope this helps! and statistically the younger you are the better your chances of maintaining fertilitly so you have time on your side!:)
 

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At 30 years of age I had my first round of cyclophosphamide in 2002 and required further cyc treatment in 2004. Like others, the first round was urgent and I was not really able to investigate any options in respect to protecting my fertility. I had investigated the effects and likelihood of cyc causing infertility and read that cumulative dosages under a certain level (I'm not sure exactly what it was, so won't put in a figure to avoid any confusion/inaccuracy) there was a 60% chance it would effect your fertility and a cumulative dosage over the specified amount was 100% in making you infertile. After the second round I refused any further cyc treatment, given it's effect on my fertility and the fact that it wasn't overwhelmingly successful the second time in controlling my nephritis. That was now 4 years ago and I am presently 33 weeks pregnant with my first child - a boy! I feel truly blessed, and completely astounded by falling pregnant and I fell pregnant the first time. When I saw your post I felt compelled to write of my experience as sometimes the positive stories aren't told! My pregnancy is going exceptionally well and the complete opposite of the advice I received - that kidney failure was my worst case scenario, given my hypertension and poor kidney function last year...

There are also other treatments available (well, in Australia anyway). I've been on Cellcept (Mycophenolate Mofetil) which was initially successful and also on Mabthera which was reasonably successful. Both, I believe, do not effect your fertility. Since being pregnant my kidney function has improved and my Lupus activity is negligible - my best results since being diagnosed in 2002! Go figure!?

Good luck with your treatment. It's not going to be easy, but just take each day as it comes and try and get lots of rest and be as positive as you can be! Things will get better...
 
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