I hope you are all managing to keep well and are staying safe.
I had major debulking last year (June 2019) aged 49. I had started having intermittent hot flushes before I was diagnosed (stage 3c high grade) but after my op. the Menopause really really kicked in.
I'm really struggling with it, sleepless nights, the horrible fizzy tickling feeling in my hands and feet every hot flush and night sweat, restless legs syndrome at night, aching joints, my eyes feel like they are spinning when I have them closed and i have a hot flush in bed at night.
I was initially prescribed Venlafexine. I was told although usually prescribed for depression, they help with hot flushes. The first time I took it, it felt like hot chilli had been spread all over my body.. It gave me really long hot flushes which lasted for several minutes at a time as opposed to my usual hot flushes of a couple of minutes. This went on all day. It was awful, needless to say I did not take any more.
The next drug I tried was Gabapentin. I took one before bedtime. The next morning I had horrendous vertigo. I tried to make it to the bathroom and I was pretty much bouncing off he walls before I could make it to the bathroom to be sick. The vertigo lasted all day. I had to stay in bed.
And so, a year and 3 months on, I'm still suffering very badly with hot flushes, night sweats, aching joints. I sleep in a different bed from my partner and this makes us both feel very sad. Does anyone have any advice... I will call my GP to discuss further, but thought if anyone has found a solution that woks for them, maybe I could try it too.
Is HRT too big a risk - is it even an option for us that have OC, even if in remission..
I really need to find a solution. the thought of having to live like this and accept this for possibly years to come fills me with dread. All advice most welcomed.
thank you
Lisa x
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Meridian14
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Hi Lisa. I really feel for what you're going through. I've had many of the same experiences but was past menopause when I was diagnosed. I think HRT may depend on whether your tumor was estrogen receptor positive or not. Mine was but my oncologist still prescribed a vaginal pessary with estrogen. Also some of your symptoms sound like neuropathy--that's probably why they prescribed gabapentin. I couldn't tolerate it either. I get acupuncture. Originally it was for neuropathy and I don't think it worked for that but it definitely helps my overall sense of energy and well-being. I hope others can help with the HRT question. Hugs!
Hi sorry you are feeling so bad. I can’t really help with the menopausal symptoms but I was prescribed gabapentin for neuropathy which I could not tolerate so was changed to pre gabalin which is much more tolerable. Hope you get some relief soon. Sending hugs xxx
Thank you for your response Delia. Much appreciated. Can i ask; how long did your menopause last. I know it's different for everyone, but maybe I can get an idea of how long this may go on for. I will double check with my CNS or Oncologist about whether my tumour was estrogen receptor positive or not. Like you were, I have been prescribed Vagifem but am so paranoid about using them. Did you find that they helped generally with the menopause (with hot flushes) or was it more locally? I know it has only a small amount of estrogen in each applicator, but I still worry. I guess my first port of call is to find out whether my tissue was estrogen receptor positive or not.
Hi. When I went through menopause I was on low dose estrogen HRT until I was diagnosed with OC in 2018. I had had a hysterectomy when I was 33 so didn’t have to have progesterone with it. So I started having frequent hot flashes and still do but they seem related to either the cancer or the treatment as well. The vagifem seems to help a little bit overall but more locally.
Thank you for your response Delia. Much appreciated. Can i ask; how long did your menopause last. I know it's different for everyone, but maybe I can get an idea of how long this may go on for. I will double check with my CNS or Oncologist about whether my tumour was estrogen receptor positive or not. Like you were, I have been prescribed Vagifem but am so paranoid about using them. Did you find that they helped generally with the menopause (with hot flushes) or was it more locally? I know it has only a small amount of estrogen in each applicator, but I still worry. I guess my first port of call is to find out whether my tissue was estrogen receptor positive or not.
That all sounds pretty nasty. I had my ovaries out nearly 12 years ago (cancer prevention) and joyfully took HRT for many years until I got Primary Peritoneal Cancer 4 years ago. Then the menopause symptoms came back. I'm 51 now so similar age. Acupuncture helped enormously with neuropathy and hot flushes. Minimal alcohol. Plenty of water. I also take a good Vit B complex which helps. Magnesium salts in the bath can help with the leg pains, there's also magnesium gels which you can rub on your legs if the thought of a hot bath is too much heat!
It sounds like you have quite hardcore symptoms so don't know if any of that will help. There was a women's health clinic in London, near UCLH I believe, that looked at alternative (but not too wacky) ways of helping with menopause. I never looked into it, in case anything cross-matched badly with chemo/cancer etc.
Thank you for your reply Wonnie. So sorry to hear it got you, even after preventative surgery. I hope that Olaparib is working well for you? Presmambly you are BRCA positive? And sorry to hear that your menopause has come back... have you completely stopped with HRT now? Or have you continued with HRT?
I don't drink very much alcohol, a glass or two of wine a week, or a couple of beers on a Friday night. But I am aware that I need to drink more water. I was in a good habit of drinking a good 5 pints of water a day but i have let that slide a bit... although, I do drink a couple of glasses of freshly squeezed carrot, ginger and fresh turmeric most days, and a squeezed lime with hot water most mornings... as well as herbal teas.
I also use Magnesium salts. I'll look into magnesium gels too, thanks for that tip. I think I will also look into Acupuncture.
You are doing loads of good stuff already. Yes BRCA +ve and I stayed off HRT once I got cancer, my surgeon at the time said 'we don't know for sure, but you don't want to risk the HRT acting like fertiliser on any cancer cells'. Wishing you all the best xxx
I had debulking surgery in December 2019 aged 49 and went into immediate surgical menopause . Same symptoms plus anxiety, weight gain , loss of libido etc. I was diagnosed with a stage 1C borderline mucinous ovarian tumour. My tumour was not estrogen receptive.
Following a consultation with my gynaecologist at the Royal Marsden last month he prescribed HRT, oestrogen only in gel form . I understand this has less risk than oestrogen/progesterone HRT. Further, taking HRT in gel form does not affect the liver or increase your risk of a clot.
Nearly 3 weeks later my hot flushes have all but disappeared, night sweats greatly reduced, improved sleep , 90% reduction in body aches and pains and a general sense of wellbeing has prevailed.
I was anti HRT to be honest but following my descent into menopause, a surgical one at that and having listened to my gynaecologist who strongly recommended HRT I have changed my mind. It's about quality of life. Surgery, diagnosis, chemotherapy etc is enough to deal with without menopause too. Having a glass of wine every evening may possibly put you at more risk .
It's a personal choice and not for everyone but in my experience I think it's an avenue worth exploring.
Wow! this sounds absolutely AMAZING, Amanda. And to hear that it has helped reduce your aches and pains too... fantastic!
I'm contacting my CNS immediately to put me back in contact with the menopause clinic so I can ask about this. I actually cannot remember if my tumour tissue was estrogen receptor positive or negative. If it's negative I'll ask about using estrogen gel... oh my goodness, I'm so pleased you responded.
I got clarification that I am definitely (moderately) oestrogen receptor positive... so definitely HRT in any form is not recommended. I will look into this more though, find out about the risk verses benefits etc.
I would avoid HRT if that is the case then. Apparently Meg Matthews has written a good book about the menopause and she has a good website called megsmenopuse.com, which you may find helpful. X
Hi Amanda, I know you posted 3 years ago but I’m looking into the same HRT question you did wondering if HRT has any effect on a moderately ER positive tumor. Did you end up taking HRT and how are you doing? Have your symptoms gotten better? In my mind, it cannot be good for a body to function w absolutely no hormones - it’s not natural. While I understand the anxiety about the risk of estrogen “fertilizing” cancer cells, I’m thinking what about estrogen’s positive effect on the immune system which theoretically holds cancer at bay… It seems w HRT, fear prevails over the rational view of how hormones affect overall health. What a difficult question it seems… one thing’s for sure - either women shouldn’t be put into surgical menopause without a very good reason (i.e. lightly), or if they’re liberally put into such a situation, there should be HRT so their bodies don’t disintegrate from lack of hormones. Hormones are the most important fuel for a body’s functioning and the least understood and appreciated by medicine. Ugh
Bless your heart. You’re really going through the mill aren’t you?
I was diagnosed at 51 ( Feb 2018) & experienced a fair amount of what you’re describing. I was reluctant to take HRT too ( my oncologist prescribed it but, after reading the leaflet, decided not to take it).
July 2019 I was prescribed Fluoxetine ( Prozac). The first few weeks of this I felt very flat & not really ‘with it’.
Luckily, after this initial strange feeling, I started to feel more myself & the hot flushes eased off ( my GP said that the fluoxetine can help with menopausal symptoms too).
I think most of us get peripheral neuropathy to some degree - it’s a weird feeling but I have managed to do buttons up & walk so I’m happy not to have meds for this.
I really hope you find something that suits you so you can live a better life & get back in bed with your partner 🙏🏽
Thank you very much for your response, Lynne. I will bear Fluoxetine in mind and speak to my GP about whether she thinks it would be worth me trying.
I got clarification that I am definitely (moderately) oestrogen receptor positive... so definitely no chance of me having HRT in any form. I'll have to find another way.
Hi! I started using Relizen from Bonafide about six months ago at the advice of my oncologist and it helped my hot flashes tremendously. It takes about a month to work, but they just started to fade away. I still get them from time to time but it’s mostly food triggers, which I can avoid. Relizen is all natural, which is sort of amazing.
Hi Lisa, did you find anything to help with your menopausal symptoms? I’m in a very similar position to you in your original post. Age 49 and a year post debunking. Awful hot flushes all day, night sweats, fizzing arms and legs, terrible anxiety and really teary. My low grade OC was hormone receptor positive so can’t take Hrt. GP suggested venlafaxine or anti depressants. Having looked up venlafaxine the side effects sound awful. Hope you found something that helped.
I'm sorry to say that I never really found anything that helped entirely... i just used a lot of cool packs, a fan, a thin sheet instead of a duvet... you know, the obvious stuff.
My symptoms have calmed down a lot, I only have a few flushes per day/night, and sometimes I don't have any at all.. and although I still experience restless legs syndrome some nights, I do not get so many hot flushes or fizzing hands/feet. So, I'm thinking/hoping, that my menopause has either calmed right down and will stay calm, or it is coming to the end of it running its course.
I'm sorry I can't be of more help. I would say, try what the menopause clinic suggest. Not everyone has the same side effects. I'm particularly sensitive to meds. You may tolerate it better.
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