Anyone on Letrozole?

[rubywoo24]

Hi everyone

I have been prescribed 3 cycles of Letrozole and I have just started AF after a very very long few months. So quite excited to finally getting things going!
We're currently away and I do have my medication with me but not the leaflet that came with it. So just want to double check that I am taking it correctly:

• do I count tomorrow as CD1 as AF only started at 9.30pm today
• is there a specific time that I have to take the tablets, I think night time is recommended?
• do I take both tablets together?

Any other help or advice would be much appreciated!

Yay @Rac3693 there's not many of us doing the same routine! So when to take it - I get confused about this every single month! You have to definitely be sure you've ovulated otherwise the cyclogest could prevent ovulation. This cycle I had the trigger 9.30pm on a Wednesday (cd13) and was told to use the cyclogest from the Friday evening onwards (CD15). She said I would have ovulated anywhere between 9.30pm Thursday - 9.30am Friday. (I think they say 24-36 hours?). Did they give you any idea when to start? I find it nerve wracking because I feel like I could mess it up! Also the whole front passage versus back passage debate... I go front passage and lie down for 20 mins for it to absorb. It does "leak" a bit sometimes but that's just the white wax coating and not the actual drug apparently. Also I get some minor cramps sometimes and they're nothing to worry about. They're common. What day are you on now? Maybe call them just to be safe about when to take it! Sorry for all the info! I had so many questions when I started it! Good luck xx

Yeah @TTCbabyONE that is hard and I think your instincts were probably right not to share what you're going through, even though talking to friends is a good idea usually. I've learnt that as lovely as people can be, some can struggle to say the right thing if they've been lucky with their own fertility. It feels so unfair how it comes so easily to some and not to us. Thinking of you. Oh by the way there's a book called The Waiting Line by Meg Keys which is aimed at friends of people TTC, telling them what's helpful and unhelpful to say. I'm too scared to share it with anyone but it is a good book. I think I got it free on Kindle and I found it helpful to read just to better understand why some comments get to me and other comments are more comforting. X

Ye thats what i was told! To start 2 days from the trigger, just hoping its not too early! So thought I’d check if you were told to do something similar! I’m now on cd 15! Took the trigger on cd 12 in the late evening! Have you started a new cycle yet?

Hope everyone is well. Enjoy the weekend.
@Sylva123 I haven't had the bloods yet- I'm CD13 today. Hopefully will ovulate within the next week 🤞🏼 and then will go for the blood test. X

Good luck @Rac3693. I hope it goes well! I've just had a negative so am waiting for a new cycle to start, then it's my last go before IVF. Although to be honest it's starting to look like IVF etc could be getting cancelled with the Corona virus. Looks like a weird few months ahead. Hope everyone is keeping well xxx

Hi all, know I’ve not posted in a long time but thought I’d let you know that I just had a call from my NHS clinic to say they’re stopping all treatment cycles for the next 3-4 weeks and advised me to stop taking the letrozole and not to try to conceive as although there’s no evidence of coronavirus affecting any babies conceived they can’t rule it out. Think they’re being over cautious about the not trying to conceive at all and got the impression that they didn’t think there was any harm in still trying naturally although obviously couldn’t say that. Not sure if different trusts will take different action but thought you should prepare yourself for the call.

I am due to start IVF this week (just waiting on AF) and my IVF clinic are still running as HFEA haven’t shut down IVF but suspect they won’t be far behind.

As if we all need another obstacle on our journeys to having a baby...! Stay safe and look after yourselves xx

@Sylva123 - just read your post from a while back and it really resonated with me, I know you don’t want to dwell on it but I just wanted to let you know that you’re truly not alone in feeling that way. I often feel like I’ve lost myself too - I’ve put on two stone in the last 18 months and often think that I don’t like the person I’ve become, both physically and mentally. I’ve always been outgoing, upbeat and fun to be around (and modest of course 😉) and I feel like the me I used to be has taken a real beating and now I’m just a poor imitation of that person. To be honest it’s part of the reason I stepped away from posting on here for a while, was desperately trying to get me back and have my entire life not revolve around my inability to make a baby. Once we’d made the decision to go for IVF I genuinely did feel a lot more at peace with and in control of the situation and my hubby said that I seemed a lot happier and like my old self but the fear of having it cancelled and now not being able to even do my letrozole cycles has really knocked me back. I hope you’re feeling ok and are getting some more support but we’ve all got each others’ backs here so you can always reach out and I bet you nothing you say will be anything one or all of us haven’t felt too. Stay strong, an even better you will come out the other side of this xx

@unknownscot just saw your question before about AMH. I got AMH blood tests as part of my NHS referral, think they cost about £60 privately if they don’t offer them. I found out I have low AMH (3.9) so have discussed this A LOT with various medical experts and one thing I would say is that the consultant at the IVF clinic told me that low AMH shouldn’t affect your ability to conceive naturally (or with letrozole etc) where you only need one egg per cycle - it’s only a factor if you have IVF where they try to recruit multiple eggs in one go. So, unless you’re considering IVF I wouldn’t get too hung up on it!

Hey @LongtermTTC sorry to hear that! I heard it differs from different area. One lady I follow on Instagram has mentioned different areas work with different database/systems but hers is a new one because we're out of the EU they can have direct contact with China and they have confirmed no possible effects on TTC and her a IVF is continuing (it's all so confusing). So frustrating though why they don't all just work the same.

What area are you x

@LongtermTTC thank you SO much for your message 💕. It means a lot to not feel so alone, although i wouldn't wish these feelings on anyone. The way that you described it feels like you've looked right inside my mind. How are you at the moment? What's going on with the IVF/letrozole? I haven't had a call from the clinic yet but I'm on cd2 today so need to decide whether I'm going to take the letrozole or not. It's my last round before IVF and like you say, I think our IVF will be very delayed now

Is everyone else planning to carry on or pause? X

I'm planning to completely carry on as normal and not let this stress me out 💓💓

Good luck @Carleyxo. I think someone from our little group is from Oxford? I saw someone on Instagram yesterday saying her letrozole treatment had been stopped in Oxford. I called my hospital yesterday - the woman on reception was so lovely, she said she felt terrified coming into work every day but she doesn't want to stop helping people. NHS staff are amazing in this crisis.
Anyway my clinic have cancelled all scans but she said to go ahead with the final round of letrozole and cyclogest without any monitoring. No trigger shot this time because I can't go in to get it cos of the risks, but otherwise they're telling people to continue. It's so sad seeing how many people have had their IVF cancelled half way through treatment. I think it could be some months before any of us can start IVF now, which is gutting cos we were due to start very soon. But I can see what strain they're under and apparently they need the anaesthetists all focused on Corona which makes sense. Sending everyone so much hope and health. I hope that regardless of what's going on out there you're all feeling okay xxx

Hi @sylva123 I’m based in oxford (there was someone else too) I have my follicle scan next week so will see what they say then and let you all know. It’s hasnt been cancelled... yet.

That’s good you can go ahead with your final round still. How are you feeling?

I am unsure what to do.. I’m 50/50 carry on as normal or wait until this has fixed down as we don’t know the risks. My OH thinks just carry on (dependant what the clinic says) xxx

I've been the same - really couldn't decide because getting a temperature in pregnancy is the same as the hot tub debacle. We're already self isolating which made me think that it should be ok because our risk is being managed that way. We're barely leaving the house. From what I've read on the HFEA website they're advising stopping treatment to ease the pressure on the NHS if something goes wrong, eg over stimulation of the ovaries. I'm doing this last one and then will take a break whilst everything settles and then do IVF. But imagine the waiting list when it all starts up again. I'm worried about my age too. How about you? What's your gut saying? And how are you feeling now? I hope you're able to go ahead with the follicle scanning. Xx

I don’t know tbh.. my heart says keep going but my gut can’t decide 😩

I just feel a bit out of sorts.. my routine is messed up and work is quiet. Usually I just take little steps like next AF/scan/TWW and find this helps with my anxiety and mental health. I’ll know more after my scan but just want to be mentally prepared if they say to cancel treatment for the time being. Hopefully if won’t be long until it goes back to normal so we can all get back on track @Sylva123

Really want to plan something nice for the weekend but obvs can’t go out so maybe a walk somewhere quiet will help xx

@TTCbabyONE are you at the John Radcliffe? I had a phone call earlier in the week from them today they’d cancelled all treatment for at least 3-4 weeks. But I’d already had my scan this cycle so maybe it’s only new cycles they’re cancelling...

• to say, not today

@Sylva123 I phoned up yesterday to start my IVF having been told on Tuesday that they were still going ahead but that any resulting embryos would be frozen for transfer later. Unfortunately the advice changed again only yesterday and I can no longer start. Feeling absolutely gutted. Just when I finally felt like I had some element of control I feel like the rug has been pulled out from under my feet. Starting to feel like maybe it’s just not meant to be and isn’t going to happen for us - maybe I’ll just get a puppy instead!

I managed to get a repeat prescription of letrozole just before they shut my NHS treatment down (as I suspected IVF might be cancelled and wanted to keep my options open). They gave me 6 months supply but think I’m going to take a break from it all for now - not because I’m worried about the effect of coronavirus but just because I feel like I need a break from it all after this latest setback.

There’s no evidence yet to suggest it affects unborn babies and they’re not telling other people not to conceive babies - I just don’t think the government appreciated the ramifications of saying that pregnant women were higher risk on fertility treatment and even HFEA haven’t come out with a definitive stance. So, if you’re taking reasonable steps to prevent infection anyway, your clinic is saying you can and you want to keep trying then I’d say go for it. Fingers crossed this is your cycle.

In the meantime, look after yourselves and stay safe everyone xx

@LongtermTTC I am so, so sorry. How heartbreaking to be all ready to go and have it all stopped. I'm so sorry.
I understand needing a break. It's really relentless and so hard. I'll be having a break after this month too - some time to catch my breath and wait for IVF to open back up. Absolutely gutting.

I agree re: the stance they're taking. I don't think it's about protecting unborn babies as the evidence doesn't show a risk, but it's to take the strain off the NHS and I guess we're an "easy" group to take out of the mix. I know they have to make hard decisions, but for us it's utterly utterly heartbreaking to have our last ounce of control and hope taken away. We just have to really look after ourselves over the coming weeks. Stay healthy and safe.

It feels like a grieving process for the bits of hope that we keep losing.

Good luck and I hope the break from it all helps, and that after all this we can bounce back and get back on track. Xx

Hi @LongtermTTC yeah I am at the JR. I’m fully expecting to be told treatment will be cancelled. I also thought they might cancel my scan but I think I’ll call on the day make sure it’s going ahead. Will let you know what happens.

So sorry to hear your IVF has been cancelled. It’s so hard and just a really shit situation, all this chaos on top of what we are dealing with. We just have to remain as positive as possible and try to look forward as best we can. I’m going to try to go out for long walks and do my best keep my mental health in check during this rubbish time. Make sure you take care of yourself 💕

Sending everyone positive vibes. Stay safe xxx

Hi everyone, how are you all doing?

Had my scan this morning, had 2 nice follicles. Been advised not to try and they are going to stop all treatment until further notice xx

@TTCbabyONE oh no sorry to hear that 😔 Hopefully this will all be over soon and we can get on with our lives x

@TTCbabyONE - are you still going to try this cycle anyway? I had a “we have to tell you not to try” with a distinct feeling of wink wink nudge nudge after my HyCoSy but clearly we’re living in different times these days and so much we don’t know.

Hope everyone’s doing ok in such stressful times xx

Oh no @TTCbabyONE I'm so sorry to read that. So sad after going to the scan and everything. How are you doing about it all? Are you feeling ok?

I called mine a few days back and they said all scans are cancelled but to go ahead anyway. Sounds like advice is changing quickly and most other places are saying to totally stop now.