I followed the link about the AIs and read all the posts. It was almost 3.00 am when I finished and now I’m tired and my anxiety is a lot higher than it was. With regards to the new predict tool for instance…I was sent mine from my breast cancer nurse a couple of months ago. We had a chat after I received it and she told me that it’s not that simple. Yes it looks like my percentage is low but it’s not the whole picture and she said the tool was mainly to help clinicians. I don’t understand any of it to be honest and eventually fell asleep with lots of percentages spinning around in my head and still no wiser. A certain person in my family keeps going on about quality of life and telling me to stop worrying and enjoy what I have. It’s easy for them to say, they’re not walking in my shoes. I’ve spent most of my life helping others and currently trying to come to terms with the sudden death of my daughter-in-law last year and being on high alert for my Son and Granddaughter through this terrible time because they need me. Those two are the only ones who don’t keep on at me to “stop worrying and get a life” because they see me as strong and capable when in fact I cry alone everyday for not just her (even the good memories can be painful) but for myself too. Yes I admit it, I’m scared. My husband has never had much empathy, it’s not his fault and his predictably drives me mad. He’s a creature of habit and I’m impulsive. I have now stopped reaching out to him and the the other family member because I feel feeble when I see their eyes roll and that “here she goes again look”. Yes the AIs may cause strokes and heart problems but I’m taking medication to prevent that happening. The risks are due to the fact that they raise blood pressure and cholesterol, I’m taking statins, BP medication and anti platelets drugs plus thyroxine. Anyway, I’ve moaned enough and will leave this post with something more light-hearted. I live inland near the Derbyshire Peak District but I love Devon and long to go again as soon as I get my appointments done with. Early hours of this morning, the sound of a solitary seagull calling. We’re nowhere near the sea and it brought a beautiful memory back to me. I was back with my Sons, Daughter-in-law, Granddaughter and Husband sitting on the beach in Devon. The call got louder and just I was about to close the thread on here, I saw Seagulls post about mad as a hatter, this made me smile. That’s what “getting a life” is about…making people smile, laugh and helping them get through their fears and tears. I’ve probably made everyone who sees this miserable and for that I apologise. By the way, if I hadn’t been told to take a break from letrozole until my symptoms have been investigated, I would still be on them and if I’m given the go ahead to carry on with them I will. Best Wishes to all especially Seagulls.
Hi @lori06 I don’t know Derbyshire so this might not be possible but I really think you would find a lot of benefit at a Maggie’s Centre. There is one in Nottingham and one in Leeds and one in Manchester. I don’t know how easy it would be to get to any of those (sorry, Londoner speaking) but you would get some wonderful face-to-face support that a) you don’t seem to be getting from your family and friends and b) would help you manage your own situation and, at the same time, get the strength to support you son and granddaughter following their immeasurable loss. You can find out more about them here https://www.maggies.org/. It really sounds as if you want to continue with your endocrine therapy for peace of mind, a mindset I completely understand. I hope the maelstrom in your head clears and you do the thing that is right for you. Consider yourself in a big old bear hug from yours truly.
Thankyou Tigress. I’m now feeling ashamed for calling my husband out like I did. He’s not a bad person he’s just more into practical things and maybe being a creature of habit gives him some sort of grounding. I have been losing my temper with him lately because he can be quite tactless and not just with me (I’m used to it) but let’s say he puts his big foot in it at times. There’s been many instances where is blunders have made us laugh but I’m not impressed with some recent ones. Yes I do want to go back to taking letrozole, I didn’t have many side effects from it, just the ones I’ve previously mentioned and I felt safe and was still quite active until I got the symptoms my GP is worried about. She was quick to act and the ECG came back normal yesterday. I’m still waiting for the other two referrals, the heart scan and the referral to an oncologist for a chat. I will go armed with a notebook with questions about everything I’ve learned and I will be firm when I get an appointment. I won’t go back on it if the risks are too high. Once again thankyou for taking the time to reply and the bear hug was much appreciated. 
Hugs back. X.
Hi. I talked to a breast clinic nurse today and she was helpful. She said she would ask a doctor if it was ok for me to to stop taking letrozole. To cut a long story short, the doctor said she couldn’t see any reason why I should stop. Well I could give her at least two reasons. So I explained my situation again with regards to why I’m reluctant to take it and the nurse more or less agreed with me because she’d looked it up and seen my notes. I did say the stroke team, if I was still in touch with them, would probably say no and the breast team say yes. Once again she agreed with me on that. Now I’m doubting myself and everyone involved in my treatment and the 6 weeks break ends on Tuesday. My appointments haven’t come through so I’m thinking of taking one every other day. I asked if that would be ok and once again I got a no I need to take them everyday. I did say well the half life of letrozole would indicate otherwise so why can’t I just try it? The answer I got was because it hasn’t had any clinical trials. I’m getting angry by this time and quite frustrated. On top of that my GP won’t refer me for a MRI scan even though the breast clinic suggested it. Apparently it’s up to the breast clinic to decide that I was told. My trust is rapidly evaporating. The reason I’m posting is to ask if anyone has has taken a longer break than six weeks because I would like to have had my heart scan and other tests before I decide whether to try one every other day. I was going to just stop taking letrozole but now I’m unsure. Doubts have been planted and I feel like I’ve taken many steps backwards.
Hi
I understand your dilemma.
I was told last year that I could take a 12 week break if the side effects were too severe. I persisted with the letrozole for a further 6 months until I was suffering from horrendous tinnitus and painful peripheral neuropathy in hands and toes. I could hardly walk.
I have taken a 10 week break and have informed the breast team that I will discontinue the AI and will not try exemestane which has a similar negative effect on the bone structure.
My vitamin D level plummeted and my cholesterol has been raised well over my previous reading.
The decisive factor for me was the result of two x-rays - one on my hands and the other on my pelvis. Both showed that osteoarthritis has set in and, for good measure , an extra bone has developed on the lower vertebra which is now linking with my pelvis! My four trigger fingers plus pain are making life very difficult.
I was given the usual warning about the possibity of secondary recurrence but eventually the breast nurse agreed that in my situation she would take the same decision.
In the end you will have to make a choice. I know that this will not be simple.
Best wishes
Rica
Hi Rica and thankyou so much for replying. I took the letrozole for just over two years before I had this break. I was fine at first and very lucky but the breathlessness, jaw pain and fatigue was frightening. I did get pains in my joints and back too. Today, I got up and felt like I did before I started letrozole. No breathlessness and jaw pain. Still had the joint pain but not as bad so I went for an early dog walking session because it was cool. I actually started jogging again, my husband was amazed. I felt great and almost cried because I felt like I could go on forever just like I used to before. It’s taken just under six weeks for me to feel normal again and I don’t want to lose it. I don’t understand what makes us all have so many different symptoms. Some more severe and debilitating than others. It’s a total mystery as to why some get relief after a few days after stopping, others maybe 10-14 days, me almost 6 weeks and sad to say to say some are left with chronic pain. I wish you all the best. I’m still thinking about what to do. I know there is a better cure out there and it’s on it’s way, I just hope it gets here soon for everyone who has a cancer diagnosis. Once again thankyou.
Thank you, Lori
I am 82 and had my lumpectomy, radiotherapy and complete axillary node clearance last May. I started taking letrozole in June and suffered different side effects straight away, including stomach cramps and acid reflux. I thought I would be able to tolerate the joint pain because I have fibromyalgia and have put up with this for many years. Unfortunately I am now almost crippled up with this dreadful painful peripheral neuropathy and recent osteoarthritis so I am constantly searching for adequate pain relief. Giving up letrozole will not resolve these conditions and I have decided that enough is enough!! I am now waiting for an appointment with the hospital orthopaedic department and hope that any suggested treatment might help - but I don’t have much confidence.
I think it was an error in my case that I was put on such a harsh drug but I was given no option because four cancerous lymph nodes were involved. The breast tumour was bigger than anticipated and the lymphatic spread worried the team. My pathology report indicates that I have a poor prognosis so the decision to stop the drug in favour of a better quality of life (?) wasn’t too difficult. My husband has suffered badly from his stomach cancer operation and is now a semi-invalid so my focus is on trying to look after him and standing upright!
I am so pleased that you are feeling so much better and can now enjoy life. I don’t envy you having to make a final decision but perhaps with frequent breaks you might be able to resume taking letrozole.
I agree that a better cure would put an end to our dilemma but I suspect that the medical establishment will not be eager to change what they already accept as the correct treatment.
Whatever you decide to do I wish you a long and healthy life.
Rica
Oh Rica, I feel so humble having read your post. You truly are a very kind person who has had so much to endure. I am so lucky compared to you and many others here and for you to take time for me is much appreciated. I don’t know what to say except that I hope you are getting the help you need. There is much kindness here on these forums. I have read them in the past when I was first diagnosed although I didn’t quite grasp how to post, I think I managed once maybe twice. I found a thread called Benchland and read it all. It made me sad and made me cry but also made me laugh. It also gave me insight into how brave and strong people are and how much support we can get here and how much support we can give to each other. I plucked up courage to post here for advice and I got more than advice…much more. Take care Rica and thankyou.
P.S. I just want to say, I have been taking ground flax seeds. I use it in my cereal and soups. I was scared to try it at first because it contains phytoestrogens but studies have shown that it’s safe so I’m giving it a go. I expect that some people here have already either tried it or use it. If you haven’t, look it up. I would put a link but I’m not sure how to do that yet. You only need a small amount mind. It does say how much to use. I just use a couple of desert spoons a day.
Hi
Thank you once again for your welcome messages.
I shall certainly explore the benefit of ground flax seed which I can buy from The Grape Tree where I source all my walnuts, dried apricots and raw cashews. I bought a bottle of triple omega gummies yesterday from H&B which contains flaxseed oil to boost my diet. I was advised two years ago by my GP to eat fish, which I dislike, after being a vegetarian for 45 years. I have a “punishment Saturday” meal of tinned sardines and loathe them, hence the gummies! I can tolerate tuna steak and small tins of salmon but now that I have the gummies I think I shall donate the tins of sardines to my neighbour’s cat!
I have been looking after my diet to ensure my cholesterol keeps within bounds but I assume that now the letrozole has left my system the reading should go down.
I am relying on my diet to keep me in good health but if I get a recurrence I shall have to deal with it but I might beat the odds and live to a grand old age like my father who managed 95 years!
At 82 I do not look to the future but try to manage each day, put on some makeup and totter out with my walking stick. I manage to trim my garden shrubs with battery hedge cutters with stick close by. My balance is not good but I take care not to fall.
I have the greatest sympathy for younger people who have to suffer this disease but at my age it seems less important.
Do keep healthy and enjoy your walks!
Best wishes
Rica
Hi Rica. I’m a vegetarian too. Been one for around 30 years. I completely forgot about getting the dried apricots. I haven’t bought any for ages so thanks for reminding me. I really do need to re-stock on quite a few things. I’ll do that on Monday. Take care and thankyou. X.
Thank you Lori for thinking of me when you are going through dark times with a predictable but unsympathetic hubby.
Love Seagulls
Hi Seagulls. Sorry for late reply. I’ve been looking at what may be causing the symptoms I’ve been getting. For instance, I was fine on Letrozole for 2 years, just the usual joint pain that eased after a walk or exercise. The jaw and chest pains started quite quickly as did the grey/blue tinge above my top lip (still waiting for the heart scan). Things seemed to settle down so I started the letrozole again but four days in I couldn’t tolerate the breathlessness and fear so I’m off it again. Then something in my head trickled back to me, a memory. I had the same symptoms before the stroke. After all the tests, my GP said, “oops we’ve been over medicating you with levothyroxine” So I looked up the symptoms of over medication and there it was, angina symptoms, anxiousness and almost all the symptoms I’ve been having. The problem is, getting the right GP at our health centre. We only have one who listens. If I can get get the correct balance with regards to levo and letrozole it would be a relief.
If you see this Tigress, I hope you’re ok. Also best wishes to everyone here. Take care. At the moment I’m praying for rain, a good downpour and not the short bursts of showers we’ve been getting. Autumn is my favourite season but not as soon as this. I’m worried about how the wildlife will cope.
Hi @lori06 it sounds like you’ve cracked the case! I am on 100mcg of levothyroxine per day myself. I still wonder if the simple blood test that they do (on which I’m usually within range but up the high end) is really sophisticated enough to get our levels spot on. We need less as we age apparently but I was put on 100mcg per day aged 40 and I’m still on it when I’m almost 70. I do hope you can get it balanced.
As for my kidney function eGFR, I had the results of the latest blood test yesterday and it has improved marginally but not enough for it to be pinned solely on Letrozole so I shall probably go back on it myself. Keep us updated.
I was taking 100mcg of thyroxine in my 40s. Then for some reason they upped it to 120mcg. In my late 50s I started having severe panic attacks and lost weight. I was put back on to 100mcg. Apparently it was too high. The problem was, in my opinion, they just looked at the T3. So after the stroke they dropped it to 75mcg. I was still uncomfortable but carried on because I was told that any lower would make my cholesterol higher. I’m going to lower it myself to 50mcg one day and 75mcg the next as I was told I could do this. I don’t recommend anyone else doing anything like this unless they have talked with their GP. Another thing I recently discovered about levothyoxine is that in older people it can cause osteoporosis and bone pain.
If the jaw, chest pain etc and the heart scan is normal, then I’ll go back to the letrozole. Maybe I’ll ask if my statin can be highered as they already highered my BP tablets. Oh and by the way, I was never prescribed vitamin D so I bought mine from the chemist. Apparently the dosage was way too high. Over twice the amount I should have been taking and too much vitamin D can also cause bone pain. I’m being sent for a kidney function blood test as a safety precaution because of my BP meds being altered to a higher dosage. Thankyou for replying and hope all goes well for you. X.