Be warned the Valerian tablets smell horrible, but it does help; not like a sleeping tablet and you will not feel hung over in the morning, but they help. If you drink the tea as well, you should have a good night's sleep. it's all natural stuff so no dangers. 

Your last line really resonated with me. It's what I've been saying ever since I had unbearable joint pain and had to change the brand of Letrozole. I am extremely glad and grateful to still be alive, but at what cost? I had no idea I had entered into some sort of Faustian bargain where I would exchange life for a host of other complaints, pain, and changed life. I cancel so many friends these days that I am in danger of losing them. I am in exactly the same position as you with the alcohol. I had to stop because I developed gastric reflux but like you, I will make the odd exception. We have to have some fun occasionally. Up until I began researching our condition, I assumed the reflux was a separate thing; just bad luck, but no. I have also had palpitations which can be caused by low oestrogen ( I am beginning to wonder what can't!) in a nutshell, it can affect the vagus nerve which in turn affects the stomach and acid production and Hey Ho, gastric reflux. So you're right, the oncologists are our saviours but we are blissfully unaware, when they hand us an AI, of the misery that awaits us. I've said this before somewhere on here, that Letrozole was approved nearly thirty years ago, high time they produced something less aggressive. I can imagine medical students in the future being astonished that women were given a drug that causes prolapse, splinted joints, thinning bones, high cholesterol (and if we take dailry products for our bones, up goes the cholesterol even more) vaginal atrophy and heaps more. It's medievaI.

I wrote on my profile that Florence Nighingale is remembered for saying 'hospitals should do no harm'. Awful isnt it?

Hi,

Yes those Valrian sound perfect.  That makes sense with the vagus nerve.  It is a strange old game the C club,  a dear friend met me in London for lunch, 3 months after my mastectomy, and said "you look so well" and that was it.  She did not know just how long it had taken me to A) be dressed and ready ie hours, and that b) I would be wiped out for a couple of days after.  3 years later, bless her she had bowel cancer, and she said "Can you believe someone said to me, 'you look so well'" she was so cross she said "well I had cancer in my bottom region so that is not on show!!! " She realised she had said the same thing to me and said she was mortified remembering that.  We just laughed at how so much changes post Cancer diagnosis.  I have made such friends and met such interesting people in my journey, with much laughter.  I did the Look Good Feel Great which was fun, but I decided to put everything on my face, enough blusher to be a traffic light!!! At the station I was more Look Scary Feel Shocked when I saw myself!!!

X

I don't want to worry you, but my GP emailed me this morning and has refused to give me vaginal oestogen, so you may find that yours may react in a simliar fashion. If you have no luck, do not give up, ask to be referred to a Urogynaecologist as I mentioned before. There is research to show that vaginal oestrogen does not cause serum (blood stream) oestrogen levels to rise and there have been no reported cases of breast cancer recurrence in any of the research I have read. You may find that you have to go through all the channels until someone helps. The other thing you can do is to get in touch with thebms.org.uk. It's the British Menopause Service and is approved by NICE. There will probably be a clinic in your area, just have a look at the website. Good luck with your GP.

Oh dear, that's not good.  I expect that my GP will say the same. I'd never heard of the BMS, but will check it out - thank you.  Good luck. 

Just keep going past the GP. it's really only the first port of call. Have a look at the menopause site, they are clinics countrywide I imagine. You may even find a phone call will give you some good advice. Good luck.

Thank you. I saw my GP, but she wouldn't give me the cream. Instead, she is writing to my oncologist to see if I can have it, so fingers crossed! 

When you see the Oncologist, you need to emphasise how desperate you are to get some relief for the unbearable symptoms you are experiencing. I have been extremely fortunate because my G.P. went to a lecture recently where the discussion concluded that if discomfort, pain and associated symptoms, like urinary tract infections or being unable to void completely, outweigh the perceived risks, then there is a case to prescribe vaginal oestrogen. I tend to view Oncologists with caution, the reson being that it is they who have caused us to be in the unhappy position we are in now. Someone recently wrote on this site, that their stance is very much a case of, "We saved your life, what more do you want?." They hand out the Aromatase Inhibitors partly to meet government targets and wash their hands of us. We are saved, but at what cost to our health. I hadn't realised until I began looking into the research, just how damaging to health this drug is. Rather like that particular lager, it reaches parts others cannot, but in a very detrimental way.

Push for what you need, I am now on day three of a course of Vagifem, which just to refresh your memory, is something my Consultant Gynaecologist cousin tells me is safe. So safe, that his mum uses it.  I am really rooting for you and praying that you have some success.

Hi all, I'm really sorry to hear of the debilitating side effects that some of you are experiencing. They sound really dreadful. I just wanted to add in a different perspective as someone else on an aromatase inhibitor (Anastrazole which I believe is in the same category as Letrozole for those of us  who are post-menopausal).

I was absolutely dreading starting on them nearly three months ago as I had read so many horror stories about the side effects.I have had a handful of brief hot flushes, and about five weeks in, for a week or two,  my knee and ankle joints felt stiff (which freaked me out in case I couldn't run any more) but that has gone now and I am feeling no side effects at all. I was also fortunate to not suffer from any fatigue from the radiotherapy, so I think there is a range of responses that people have to the treatments.

When I discussed it with the oncologist at my follow-up appointment she felt that my fitness and active lifestyle made a big difference to why I wasn't experiencing the side effects but I fully appreciate this is not necessarily possible or desirable for everyone. I definitely didn't feel like my oncologist was trying to palm me off or tick a box by putting me on the medication- she was really kind and compassionate and I felt that she had my best interests at heart as my cancer was 8/8 for oestrogen responsiveness.  I really don't like being on this drug for so long (five years) but I will do so to reduce the risk of recurrence.

I haven't walked in your shoes to know how hard it must be to manage with such tough symptoms to deal with so you have my sincere sympathies on that front. I just wanted to add my voice because it is usually only people posting about how awful the symptoms are (because it would certainly make me feel vocal!) and those of us who are not having side effects don't tend to say so.

I hope you find some relief or are able to get the support and help that you are seeking x

Thank you so much for responding. It was interesting to hear your story. I'm sure that it helped you being fit beforehand - I only wish that I had been, but sadly had been unwell a few years before I got the cancer.  My joints are very bad. I can only hope that I find some relief from some or all of the symptoms. I'm on a mission to get sorted, as I have just left it. I now realise that this will be my life unless I push the medics.  Best wishes to you, and take care. x

Hi [@bibacaron]‍ it sounds like you have had a lot stacked against you and I'm really sorry to hear how bad the joint pain is. That must make day to day life feel pretty unbearable. Good luck on your mission to get it sorted. Do push for what you need. On a totally unrelated front, in my 20s I was fobbed off by multiple GPs that my unbearable stomach and pelvic pain, digestion issues etc were due to IBS or even a wheat allergy - I gave up wheat for a year to no avail. This went on for eight long years where the quality of my life was so awful  It took a knowledgeable and empathetic gynaecologist (I was being treated for a second time for high grade cervical cell change due to HPV ) to tell me I most likely had endometriosis and not IBS. She turned out to be right and treatment for that turned my life around for the better for 10 years (still ended up having a hysterectomy at 39 when my pelvic pain returned with a vengeance). I appreciate this is a bit of an unrelated example but I was sharing it more in the spirit of showing how the right medic can make a difference. I did read somewhere that if the joint pain is really bad you can be asked for a referral to a specialist who focuses on that area to see if they can help. Might be worth asking? Best wishes to you too xx