Very heavy bleeding with flooding and clots on zoladex and letrozole

[Faith50]

Thanks for your post and thanks for thinking of me. Yes, hasn't the weather been amazing this weekend? I hope you enjoyed it. We went to Norwich. We planned it some while ago and I Thought I wasn't going to be able to go but bleeding has stopped now. Only because I've stopped the letrozole I suspect. Still finding it difficult to see a way forward with this.

Best wishes

Faith

[Nolton9]

Thanks so much for the info and update.. I am just back from an almost tropical day on the southbank with kids and wondered how you had got along with scan, so good to see yr post. I think the radiographer sounds spot on.. definitely sums up my experiences with hormones...my body does the opposite to the expected on them too! CONTRARY!

Hope everything settles down, you should feel very proud  of yourself coping with all this lot... 

take care.

[Faith50]

Hi

Just adding this as an update in case it might help you Nolton? Had scan today and I said to radiographer I shouldn't be bleeding at all because I'm on zoladex. He said that fibroids don't always want to listen and that my fibroid is a complex one. Nothing else sinister seen although my fibroid tends to obscure a lot. Small piece of good news is that zoladex seems to have shrunk the fibroid a bit. Not enough to stop me bleeding though it seems!

Faith

[Faith50]

I saw the GP as soon as the bleeding started and I've taken tranexamic acid which has now stopped the bleeding. However, I've taken this drug in the past and my experience with it is also not straightforward. You shouldn't take it if you're not bleeding so when the bleeding stops I stop taking it but then after about 24 hours the bleeding starts up again so I take it again and so on and so forth. The problem comes if the bleeding continues after 4 days because you're not meant to take the drug for more than 4 days. The good news is I have Bupa cover so I have an appt for ultrasound tomorrow and will hopefully get appt with consultant soon. In the meantime I've stopped the letrozole with agreement from onc although he feels it's unlikely the letrozole has caused the issue.

I hope you reach a decision you feel comfortable with regarding the zoladex. Good luck whichever way you decide and I empathise fully as I know how hard this is when you have the added complication and worry of the gynae issues. For me at the moment this is almost the straw that broke the camels back as I really don't know how much more I can cope with just at the present moment. Hopefully I'll find a way forward. I hope you do too. Thanks for your posts.

Faith

[Nolton9]

I had DCIS and a micro invasion and 4 clear nodes, so I'm in a slightly odd position re all this,  pretty sure hormone therapy  isn't usually suggested after a DCIS diagnosis  unless there is a significant family history or you really feel anxious  but I've been bumped a stage because of a 1mm invasive component. It got even more 'off-usual' as due to gynae probs I can't take tamoxifen!!! so zoladex was all that was left I guess.

if I hadn't had the experience I had with HT previously and my gynae history I most likely would've given tamoxifen a good chance but bailed if SEs were too much but the risk of its more serious side effects versus benefit for me plus a previous emergency on a similar drug makes my decision much harder. Likewise a change in my diagnosis and pathology would've meant something different and zoladex would be less of a huge hammer .. In the end I just took the route that I found less scary....nowhere near ideal but the only way I could get any peace in my head!

If you are still bleeding tomorrow anything like that heavily I would  perhaps see yr GP just to check in, I think women can sometimes tough it out with gynae bleeding even when its very heavy. Best not to leave it.

hope things improve.

[Faith50]

Sorry I meant to ask you if you'd come to a decision about the zoladex? Will it just be zoladex that you have if you do decide to have hormone treatment? Is your oncologist not worried about oestrogen from other parts of the body?

Faith

[Faith50]

Thanks for your reply. I'm comforted that you said the heavy bleeding was terrifying because I find it terrifying too. I worry I'm going to bleed to death. Fortunately the gynae is going to see me hopefully on Friday and I'm getting a trans vag ultrasound on Thursday. In the meantime I've been allowed to stop the letrozole but presumably will have to start it again with possibly the same effect. I guess I must try to stay calm and see what the scan shows and what advice the gynae has for me. What you say about the lining of the womb makes sense. Interestingly my oncologist said the heavy bleeding is unlikely to be caused by the letrozole whereas the gynae says it's a known but rare side effect when starting letrozole. Ho hum.

Best wishes

Faith

[Nolton9]

Hi Faith50,

I think we've "talked" before re hormone therapy decisions. Very sorry to hear you're struggling, I had similar heavy bleeding two years ago,  on hormone treatment  for fibroids and it was terrifying. With hindsight!! I was a bit too passive in getting mine sorted as I think we can be with gynae stuff, hope you have a much better team.

I have a similar gynae background to you and did some research on zoladex and it seems that erratic bleeding can occur in the first few months for some. I read it was the effect of the lack of hormones on the lining, making it unstable and then prone to breaking down initially....for me I figure I have alot of womb lining due to endo... I stress this is just my take and I think its a rareish occurence..but sometimes just knowing a possibility helps.  So many not clear choices..

hope you get some help and advice soon.

[Faith50]

I was pre menopausal but put on zoladex and letrozole rather than tamoxifen due to pre existing endometreosis and a large and troublesome fibroid. I started letrozole on Friday and had my 4th zoladex injection this morning. This afternoon I started very heavy vaginal bleeding with flooding and clots and am soaking through super plus tampon and night time towel every half hour. I used to have episodes like this before the zoladex but can't understand why this is happening when I'm supposed to now be in menopause because of the zoladex. I don't know what to do. Should I stop the letrozole? My oncologist was adamant I mustn't take letrozole unless my ovaries were shut down. I've been to my GP and am trying to get in touch with both my gynae and the oncologist but in the meantime if anyone can help I'd be very grateful. Not sure I can take much more stress.