Thought I would just add how I was dealt with before I was allowed Letrozole.
I had already had a straight bone scan to check that there was no spread to my bones. Fortunately (or not!) all that one showed up was quite a large amount of arthritis. At 62 I already knew about some of it but some was a surprise.
I was then sent for a dexa scan which I understand checks the bone density. Although I was told that this also was OK the onc prescribed chewable calcium and vitamin D tablets which she said was to try and protect my bones. I did ask how often a dexa scan would be done if there is a danger of the letrozole affecting the bones and she said every 18 months to 2 years.
I was considering coming off HRT before being diagnosed with bc and so my GP organised a bone scan. When the oncologist was considering options, she said it would be helpful to see the results. Even though it was the same hospital, I had to go to the GP and get them printed off. Anyway, it said it was normal for my age and so it was not thought I needed any treatment - yet. I had been on HRT for a long time and so I suppose it had helped to protect my bones. I will ask my GP what he thinks about taking calcium, when I go for a ‘refill’. The hospital gave me one month’s supply of Femara. I presume I go to the GP thereafter. I shall also ask about future bone scans. By the way, the Spanish locum onc who I saw, let me choose which tablets to have - sort of DIY oncology! I had done some research prior to the appt and chose Letrozole. Hope it was the right choice.
As far as side effects go, I think I am just getting ones that I was having anyway, from stopping HRT - aches and pains, poor sleep and flushes. It is really too early for others (3 days). However, do any of you have a funny sort of tingling from the waist down, into the legs? It is hard to describe but the closest I can get is looking at the description for “restless legs’ syndrome”. If so, does it wear off? It is really weird.
Hi
Thanks for that Andie. I too had a bone scan before my op to check that there was nothing sinister there. I was just told that everything was OK, no mention of arthritis or anything.
I’ll ask about calcium and vitamin D when I have my check up I think.
Ann there is a post somewhere else about that tingling sensation. I haven’t had it but I do get fidgity legs when I’m tired. Don’t know what that’s called.
I’m not sure about the period of time for the side effects to start. My doc said I was wise not to start Letrozole until I got back from holiday because it might affect me temporarily. But I suppose we’re all different.
I’m not as achy today to maybe it’s wearing off. Hope so.
Hi all Im poking my nose in again,my(extremely honest)Mcmillan nurse told me that the bad side effects peak at 6months so dont think in days or weeks even yet,its early days for some of you,I remember AndieT posting about reduced mobility on Femara,think I was put on it the same time as you,my biggest problem has been it made my other boob sore,so much so I can`t lie on that side in bed. Had it checked out in July,had a routine mammogram on Monday,so far no
phone call or letter. On the plus side,my hair pre BC was my worst feature,good job I was a hairdresser,now its my crowning glory!
Love to all Mags x
Hi Mags
That’s interesting. Do the side effects ease off after they’ve peaked I wonder? I think you must be around the ‘peaking’ time now. It would be interesting to know your experience.
I hope your mammo results are clear.
I was interested to hear about your hair too. There’s another post which says Letrozole makes your hair go lank which concerned me a bit but I feel better after hearing your experience. It just shows how different we all are.
It’s good to know both sides of the story. I think the motto is ‘Be prepared for anything’ or hopefully nothing!!!
I had an interesting chat with the pharmacist today. I had rung to ask if there would be a problem getting hold of Femara, as I had read on here that some people could not get hold of it easily. She told me that they had already set up an account with the company direct and she could get it in a couple of days, by courier. Incidentally, she pronounced it Fe-ma-ra, whereas I had been pronouncing it Fem-er-a, if you see what I mean, never having heard anyone say it. I expect I was wrong.
Apart from taking calcium, she also recommended limiting carbonated drinks, as they cause calcium to leach from the bones, and doing load-bearing exercise. She suggested skipping (with a rope, not hopping along!) and I thought that was a good idea for the winter, as it can be done indoors with no-one looking! I find pharmacists are more useful than doctors, sometimes.
That is interesting. I think many of us under estimate pharmacists. I just got back from Italy where I had a poorly eye. I was advised to go to see the pharmacist. He was brilliant, gave me some drops which cleared my eye up in a couple of days and yet if it had happened here I would have gone to see my GP and I’m sure that our pharmacists are equally qualified and capable and the Italian ones.
My bone scan letter said about doing load bearing exercise but I’d no idea about the carbonated drinks. I don’t drink a lot but from now on I won’t be drinking any.
Thanks for the info
Went to the doctor the set up Letrozole prescriptions and he has given me Adcal-D3, a chewable calcium tablets. I downloaded a leaflet on it and it says to make sure your doctor is aware of any other medications you are taking. Well, I take thyroxine, which he should know about, although I don’t know if he noticed - that is one of the drugs it says to leave a 4 hour gap between them. Now, I shall have to remember to take the calcium at a different time of the day. This is getting complicated. I am torn between taking too little calcium and too much, as my Mum had kidney stones at one point in her life and crumbling bones later on!
I have had acid indigestion a couple of nights, although it was before taking the calcium. I hope that is a passing symptom, too.
Be careful with the skipping, ladies !
My friend recently took up this exercise at the age of 49, as her mum has had problems with osteoporosis etc. However, on her second or third session she damaged something in her ankle. This was back in the spring and she still has trouble with it now. She has found it is only comfortable if she wears high heeled shoes, which has been a little difficult as she was definitely a trainers or flip flops type of girl!
She also report that bouncing bosoms made skipping rather awkward and had to invest in a very supportive sports bra !! ( she’s about a 32/34D)
Hi Ann
It sounds like your medication needs a diary of it’s own. You’ll have to put a reminder on your mobile phone for the time each day you need to take what!!!
I think I might ring the doc and ask about calcium tablets.
I felt unwell yesterday and it was my daughter’s graduation. Anyway I managed the ceremony (very proud moment) and the family meal afterwards. I was a stiff as a board and had trouble getting up the steps out of the hall where the ceremony was. Mind you I had high heels on!!
I wasn’t as bad this morning and so I’ve been for a swim. I feel brilliant. No stiffness and my left foot which has been really stiff and painful is back to normal!!!
Anna - I took up indoor skipping a few years ago in one of my many, short lived keep fit phases and hooked the rope around the light fitting and fused all the electrics!!! I’m banned from keep fit inside now.
Before I was DX I used to do pilates from a CD every morning. It made me feel good and improved my posture. I’m thinking that I might try it again if I can find the CD. I only did the stretching exercises nothing complicated.
Hope you are all feeling well today.
Love Jan xx
