First IVF Cycle Cancelled....Devasated

Hi everyone. This is my first time posting on BellyBelly (just registered today), but I have been following a number of threads for a while.

I had already started my first IVF down reg cycle (pill, synarel etc), and my egg pick up was supposed to be today. I had my ultrasound on Monday and we measured 18 follicles (between 10-15mm), which I was really excited about. I then had another blood test on Wednesday but when the nurse called me with the results, she told me that my progesterone was too high, indicating that I was already ovulating (or just about to), so the cycle had to be cancelled. I couldn't believe it. Her explanation was that even though I was using synarel to suppress ovulation, that synarel may not work for everyone, and I'm obviously one of those people. I honestly feel like the last month has been a complete waste. The nurse now has to consult the specialist to decide on a new plan of action, which is going to be specific just for me. I'm expecting her to call me over the weekend, so until then, I have no idea where we go from here.

Anyone else out there who has had cycles cancelled?

Hi Wishes, sorry to hear this news for you.

I almost had a cycle cancelled due to high Oestrogen levels and I was devestated. I cried when they were telling me. My near cancellation was for a different reason from yours but I'm sure the emotions would be the same.

It may not seem possible to look on the bright side for a little while yet, however keep in mind that the first cycle is pretty much a 'test' cycle where they work out what may and may not work for you. Obviously they have determined synarel may not be best for you.

We go into cycles with such high expections. It's just devestating when things don't go as we plan and dream.

I hope you get some answers over the weekend.

i was going to say similar to Cece - the first cycle is, unfortunately, a guinea pig cycle for each of us. my first two cycles were cancelled for failure to respond after Synarel so i lost almost four months of "trying" - it was absolutely devastating. my problem was an over-response to Synarel

what you will probably find is that they will put you on an antagonist cycle - what happens with that one is that, after several days on puregon, you'll have to start jabbing a second needle every 24 hours to stop you ovulating. this one can be done in conjunction with synarel or may be done as a stand alone type of cycle with no synarel used. i started using this type of cycle and from then on, i had the perfect "text book" response to the meds each time.

i understand your devastation completely hun, and wish i could say something profound to make it ok for you at this point. hope you get some answers from your clinic soon to put your mind at rest

take care and good luck

BG

Another one who's been there, done that with the first cycle cancelled. Mine was due to a complete lack of response to synarel. In the end, we started again, but used lucrin instead and things went ok from there.

The problem with IVF, as the others have said, is that it's all an experiment to try to figure out how your body works, but there's always something else they can try. I know it's upsetting, but try to think of it as a learning experience (for the doctors at least!). It is quite likely that things will go much more smoothly next time.

BW

do they tell people that there is the possibility of having to cancel the first cycle, or is it only through going through it that you find out?

take care,

kate

Kate - i think with anything, it should be explained that the cycle is experimental and may or may not progress. we were told "we will try this, if it doesn't work, we'll rethink our approach" - it sure as hell didn't take the sting out of it when the cycle was cancelled, but i also had a LOT of other stuff going on at the time (my nan passed away the day cycle was cancelled, and i found out the day before i needed major surgery) so i think i may have been more sensitive and was thinking less about what had been said in the past and more just about how it was impacting me right then...

Wishes, our first cycle was a bust. We got to egg pickup but... NO EGGS! It was pretty devastating. They guess I ovulated early or something, were never really clear about it.
Our second cycle was a complete success, however.
Like the other girls said, it's all a bit trial and error. I know it probably doesn't seem like it, but you are getting somewhere cause they've just learned something very important about how your respond to the drugs.
Good luck in future

Hi girls, thanks for the responses. I got a call from my nurse at the clinic this morning and she had spoken to one of the senior scientists about me yesterday (as my fertility specialist is away). The scientist's response was that it's just one of those things that happens (ie. synarel not working, and ovulating prior to EPU), but his opinion is that it would most likely be a one-off (not sure if I'm particularly thrilled with that "non-medical" explanation). Therefore, his suggestion is that I go back on another down reg cycle still using the same medications (synarel, gonal-f etc), but second time around, they will monitor me much more closely with blood tests (the nurse had said they'd start blood test monitoring from day 6 of FSH injections and every second day after that). If they see any rise in progesterone, they will give me another drug to inject to stop ovulation (maybe it's the same one Briggsy's Girl mentioned - the nurse told me the name but I can't remember). So I don't know if what I've just described is an antagonist cycle, or if it's just another down reg cycle. I don't really know what the difference is (still very new to this). However, if they monitor me and don't see any rise in progesterone, then apparently I'll just go along as normal like I did the first time. I"m just very worried that the same thing will happen again though. I am a complete control freak, and I hate not being able to control any of this.

The nurse also told me about Lucrin as an alternative to Synarel, but that it's very expensive ($700-$800). Is that about the same everywhere? I guess they're trying to do the right thing for me by not putting me onto Lucrin because of the cost, but I can't help but wonder if I'm going to have the same response to Synarel again, and ovulate before EPU.

The nurse had also mentioned the possibility of a Flare cycle, but said she would have to speak to my FS about that, who may or may not go for it. I will hopefully find that out on Monday when my FS is back at work. My FS is going on holidays for a couple of weeks at the start of July, so last EPU before she goes will be 26 June, and unless I can get in before then, the first one they'll do after she gets back won't be until 24th July. So if my FS doesn't let me do a Flare cycle, then I'll have to do the down reg cycle, and will have to wait til 24th July for EPU, which is another 10 weeks away.....which seems like forever. Otherwise, if I can do the Flare cycle, I should be able to start injections in a couple of weeks for EPU mid June.

The nurse had mentioned though, that they target certain types of patients for the Flare cycles, being women who are of older maternal age, and/or women who do not respond well to medications in a down reg cycle. I don't fit into either criteria though, as I am 30yo and I responded well to the meds in the down reg cycle. So I'm not going to hold my breath that my FS will let me do a flare cycle, but you never know I guess.

Anyone else got any advice on down reg cycles compared to other cycles - eg. flare, antagonist etc? Has anyone heard if the results of a flare cycle are significantly worse than a down reg cycle? And what is the difference between them?

Wishes xoxo

Hi wishes,
Welcome to BellyBelly.
I am very sorry your cycle was cancelled, I am currently in 2ww of my first cycle so ca'nt speak from experience of having a cycle cancelled but just wanted to say I can imagine how awful it would be to go through everything only to get almost to the end and have it cancelled :hug:
I hope that all goes well on your next cycle, take care

wishes - the antagonist drugs are either Orgalutron or Cetrotide - they basically stop any type of surge of luteinising hormone. they are taken every 24 hours until they're ready to trigger your ovulation, and cost around $100 a day (ball park) so it's an extra expense for you and one the doctor will probably try to avoid if possible

as to flare cycle - it's similar to a down reg cycle but they go off your natural AF - sometimes they can't get as much control over your hormones as they can't guarantee that your hormones are essentially "flat lined" before they start you on synarel...

antagonist cycle usually goes off your natural AF (well, for me that's what i was told) - they don't do any down reg at all (so no synarel, no pill) - for me, what they did was to try to force a bleed (i have no natural cycle) and when that didn't work (stubborn body!) the then did a blood test to make sure my hormones were essentially flat (similar to day one or two of AF), then started me injecting puregon (similar to gonal f). after 7 days, i was scanned for follicular growth, and either put on the antagonist meds for a few days to allow more growth (to get to optimal size) or, as it has been for a couple of my IUI cycles, we simply did two more days of jabs and then triggered ovulation. for IVF, i started cetrotide or orgalutron (can't remember which) on day 7 automatically, had scan on day 9 and BT on day 9, triggered ovulation day 11 for EPU day 13...

hope that helps - it can be very confusing when so many terms are being thrown at you from everyone and you're still in the dark - and given you were talking to the nurse on the phone, it's hard to say "hang on, give me more detail"!

Thanks BG.....Confusing is an understatement. Now that you mentioned the antagonist meds, I'm pretty sure my nurse said it would be cetrotide that they would give me to stop ovulation, if it looks like I could ovulate early. I'm wondering whether or not a flare cycle is the best way to go, if they have less control over hormones etc. like you said. But I guess that if my FS doesn't think it's a good idea, then she won't agree to it anyway, and I won't have to make the decision.

I really just want to get started on my first "proper" cycle (which results in an EPU and ET). I know everyone says that the first cycle is considered a trial run, but does that mean my cancelled cycle would be considered my first cycle, or will it be the next one, assuming I get all the way to end next time? It seems like this process takes forever, and I would love a crystal ball to see into the future to tell me when it will be my turn.

Cadence - thanks for your support. Good luck with your 2WW and I hope that you get a BFP at the end of it.

Wishes xoxo

most FS' are reluctant to use flare cycles unless you've proven unresponsive to a down reg cycle from what i can gather - so it may not happen for you unfortunately. i don't know for sure though - your response to the synarel not controlling ovulation may mean he tries to tweak things pretty strongly


even after 10 attempts (only one EPU due to using IUI a bit) i would still give anything for a crystal ball to know what is going to happen!

Well I'll find out Monday which cycle I'll be going with next.

So was your one EPU the one that you got your BFP? Or was it through IUI? I think I saw a previous signature block of yours that says you are pg? Hope I didn't get that wrong.

Wishes xoxo

Wishes, my second stim cycle was a regular down-reg cycle with lucrin, but I was given orgalutran on top of it as my E2 levels were getting way too high. It's not a "normal" thing to happen, but it's not unheard of. I was on it for a different reason to you, but I can certainly say that it has been done before.

I can't believe the price they are quoting for lucrin! I'd pay about $150 for it through my clinic, and it wasn't that long ago. Perhaps you could ring around a few pharmacies to see if you can get a better price? From memory the orgalutran and cetrotide are also pretty expensive, so it might just be worth costing things out in full to see which would be the better way.

In many ways, every single cycle you do is a bit of an experiment. Each time they learn a little more, and each time they do things a little bit differently. For me - we first had to learn that I don't respond to synarel. Then we had to learn that I don't respond to low doses of puregon... then that I respond too well to high doses of puregon... then it was a case of figuring out that it's still a problem if we start high and drop down quickly... finally we figured out that I need to start at a slightly higher dose of puregon and be monitored very closely as well as follow a very strict diet and take anti-fungal drugs in order to finally achieve success. Most people don't need to go through even half of that!

All you can do is hope that they have learned enough to get to EPU this time and that things will work from there. They may then learn that you need to grow your eggs a little longer than normal (or for a little less time than normal), but they tend to just go with averages and what works best for most, start there and vary where necessary. There's no way to know exactly what will happen until you get in there and try it.

I hope all of that makes sense and isn't too depressing.

BW

hi wishes... I too have just had a cycle cancelled, due to no response to synarel, and I also feel really down and disappointed! Last week when I was meant to start injections they said my oestrogen was too high, and to stay on the synarel an extra week (which is what happened in my first cycle, and I responded after the extra week)..but at the next blood test two days ago, my hormones had risen (doubled!) and it appeared I was close to ovulation, so the cycle was cancelled. And same as you, I have been told to simply wait for a period, then we'll go again, using the same approach. I am not too confident about simply repeating things. My nurse also said Lucrin was very expensive.
I can certainly relate to that feeling of being so close, after 5 weeks, on the pill, and sniffing synarel (not to mention the general ups and downs of the past year leading to this)..to then have the rug pulled out from under me, and right back at the start.
I really wish you all the best for your next go.

And thanks everyone who has responded..it also helps me!

BW - Thanks for the advice. I will definitely be questioning the Lucrin price, but I'm hoping I won't have to worry about it (and that the synarel works second time around). I'm also hoping that they're not going to treat me as an "average" because my fear is that if they do, I'll slip through the cracks again, and ovulate prematurely. I will definitely make sure that I keep them on their toes and that I'm being monitored regularly. If nothing else, it gives me a small sense of control in this uncontrollable situation.

Other than ovulating prematurely though, they seemed to be happy with my responses for everything else. E2 levels were good and I responded really well to the gonal-f too. It's just the fact of ovulating early that we need to fix. Here's hoping for next time....

Wishes xoxo

wishes my pg is from an IUI. we had to wait between IVF cycles as we are very regional and only have local clinic every 3-4 months. so we asked to do an IUI and had success. having said that, from three ivf transfers (one fresh, two frozen) we did get a positive as well, it just wasn't strong enough to hang around unfortunately.

as BW said - i think until they find THE formula that works for you and your body, every cycle is an experiment. by the cycle that we got the Gremlin's BFP, the FS was actually deferring to me in regard to treatment options (IUI number 7, plus IVF and two transfers) - he let me choose my drug dosage based on previous cycles. it's not normally like that, but after a while you do get to know your own body better than the FS (you're one of one with you, one of many with them) so it's nice to know they can and do respect your input...

Possums - I'm sorry to hear that your cycle was cancelled too. And I know what you mean about being so close yet so far. It felt like the whole previous month of pill, synarel, injections etc were a complete waste of time. I'm terrified the same thing is going to happen again. I don't really get it though, because I seemed to respond to synarel really well in the beginning. After taking synarel for 10 days, I did my down-reg blood test and my E2 result was "less than 50", which is apparently really good. My nurse said that when the level is below 50, they don't even specify what the actual level was. So I don't really know when went so wrong between then and just before EPU, and why the synarel didn't stop me from ovulating. Do you know when you'll be able to start another cycle? Will is be another down-reg or will you start injections when AF arrives?

BG - You must have been thrilled when you got the BFP from the IUI. It will be a strange thing if/when it happens for me, because I have no idea what it's like to have a positive pregnancy test. I usually resist the urge to do home pregnancy tests, because the way I see it, what's the point in spending money on the HPT, when all I have to do is wait for AF to arrive. In a way, until I get AF, I still have the hope that I might be pg.

Wishes xoxo

wishes, to be honest, til we seen the heartbeat a couple of weeks later i couldn't properly embrace this pg cos we'd lost five before hand - it kinda jades you kwim?

good luck hun

wishes- thanks, and it will be another down-reg for me (I have just posted another thread, as I am a bit 'woe is me' right now :redface:) ...I can imagine how you feel, having done the injections as well, and being so so close...plus having had the good result with the earlier BT. Fingers crossed next time our bodies respond as we want them too