HRT after SCT

Hi HopefulMummy123 and it’s so good to hear from you again and your rambling is very welcome but oh how time has passed and we meet again in a changed world.

I obviously have no first hand experience that can help even scratch the surface of helping you so let’s look for those who can to come along,

Hi, 

I think you need to talk to either an experienced GP or a Gynaecologist as I think the knowledge is sadly lacking in far too many doctors about treating post-cancer.
Our lass had loads of treatments for HL and is now in her early 40’s. Had a return of periods after her auto in 2005 but not after her allo some years later in 2011. To protect both cardiac function and bone status her haematology specialist advised HRT. She had to try several before settling on one which I think is an oestrogen type only, since they decided she was in a definite menopause. She also has annual breast MRI’s due partly to that and also to the fact that radiotherapy caught the edge of one boob. 
Hope you get some sense out of someone soon, do persist, though Covid doesn’t help! Have they done hormone levels blood tests? I believe these take a few weeks to get results but might be worth you asking about them? 
Hugs xxx

Wow our stories are similar! I was diagnosed while pregnant in 2016. Didn't get into remission with chemo i had while pregnant. Very long story but I eventually had an allo transplant in June 2018. Have since relapsed but got back into remission with a few doses of Nivolumab. I'm sorry you've also had such a difficult time. 

Anyway I've had loads of problems with getting HRT right. I'm currently on 150mg oestrogen patches and 100mg utrogestan and things seem to be quite settled.  I'm under a gynaecologist at Southampton who is experienced with transplant patients but to be honest I've seen her twice in two years and haven't had a huge amount of advice from her. It's all been a bit of a struggle. I've had to try various products due to supply issues and it def takes a while to adapt each time. 

But it is a tricky one - after going through so many treatments, a transplant, a near death experience with Covid earlier this year and having two young children it's very difficult to work out the cause of different mental and physical problems sometimes 

So not much advice I'm afraid but plenty of empathy! 

Charlotte

Wow yes Charlotte, our stories sound very similar indeed!

I'm sorry you relapsed again but so pleased the nivolumab has been successful!

Thank you so much for sharing. It really is helpful! As you say, it can be hard to know what is mental and what is physical...

I was 'okay' on 100mg for a few months until I bled continuously for 3 weeks, so the GP upped it to 200mg while they pushed through an appointment with gynaecology, and it made me feel a bit unstable.

I was wired, very emotional and put simply, I really didn't like how out of control I felt. I have come off it for a blood test now, and feel so much better. 

I was thinking of asking about the patches when I restart. Though I think my gynaecologist feels that 1mg estrogen is high enough and doesn't want to increase it while I am having difficulty with the progesterone dose. I was hoping to try a higher dose as I know it can help with mood. 

Also, do you take the uterogestan orally? I have read that there may be less side effects if taken 'differently' (saving the blushes! Don't know why after 3 children lol) .. but that this method of prescribing would be off label and harder to monitor. 

Again, really appreciate your reply, thank you. 

Xx

Thanks so much Moomy. It does sound feasible that I may have had a slight ovarian recovery and that a recovery is possible, from what you say.

I have come off the tablets (advised by consultant) to have further bloods, so  that helps! - Yes I had a FSH test 6 months post transplant, but only the 1st of the 2. GP said the 2nd wasn't needed. I've asked if they can repeat these now I am 20 months post transplant and my body may have recovered further. 

Interesting you say your daughter is on estrogen only. I was told that I would definitely need a progesterone until I am 50ish when I would go into menapause naturally, so I may just run this question past my consultant. It's the progesterone I am really struggling with taking, so I would like to know at what point would they deem it not needed, if that makes sense!

Thanks so much 

Xx

I think they ran all the blood tests for daughter and yes, she had no ovarian recovery, so they felt that was best for her. She was awfully young to start so it is a worry but as I say, she is being carefully monitored. Plus having a mum who was on HRT for 10 years and eventually developed bc then she’s very aware, and will insist on regular testing!

Hugs xxx