Saw my oncologist this morning. She is giving me two to three more weeks to heal from the BMX & reconstruction and then it's on to Letrozole for 7 - 10 years.She said it makes no difference which AI I start on and alternates with each patient! She said seven years but it may be 10 as there are three clinical trials due to mature in that time.She said that it will almost certainly give me stiff joints which I'll have to manage with exercise & supplements like krill oil. She reported that other women have had success with turmeric and other supplements. I will work through all recommendations in my own clinical trials. Suggestions welcome!As I'm only (ha!) 51 and was still menstruating when I was diagnosed, she'll monitor my ovaries with blood tests every three months to see if they show any signs of trying to get me to do so again. If they do it's a monthly injection of Zoladex into the belly. Oh joy...The exercise physiologist at the BCNA Life After Breast Cancer information night was very interesting and informative. So I'm starting to plan what my exercise regime is going to look like. I think maybe something like yoga once a week for stretching and stress management, weights twice a week for warding off the osteoporotic side effects of Letrozole and improving my metabolism, and walking for at least an hour six to seven days a week for cardio health, fat burning and joint stiffness. Does that sound about right? Apart from being a massive time and money soak that is...

Ladies my kids were 15, 17 and 25 at home they have come through this resilient and I know it was through the sharing of information as they needed it and also the cuddles and times for them ... THEY have a better understanding of what really matters in life... it caused my 15 to knuckle down into her studies she is now in 3rd yr uni to be psychologist etc. boys had some ups and downs with it but partially due to autism Love your kids and do what you are doing they will come out changed from this but with help and supports from you and others they will continue to blossom into beautiful young adults. Hugs girls

If I sit still for more than two hours I seize up. Yoga daily, stretches every couple of hours. Throwing things is good for cardiovascular fitness and stress. The term 'things' is the key, tantrums don't really count though they do get your heartrate up. Chunks of wood work for me; beat them with an axe, heave them around, save some for sculpture, just avoid contact with the windows.

I have on Letrozole 10 months and yes there have been some side effects more evident earlier on but manageable and now I think my body has adapted..I too was very nervous at the outset as I have osteoporosis and had has already an osteoporotic fracture before bc diagnosis.I recommend a bone density test at the outset so you have a baseline for comparison as all AIS thin bones.I was put on 6 monthly Prolia injections to counter this problem.I read Prolia has synergies with Letrozole further reducing recurrence risk.I also take Caltrate Bone and Muscle Health two daily - the calcium and vit D conforms to the standards set by the Australian Osteoporosis Society for my age and situation.It also contains Magnesium that many on here have found helpful though probably in a lesser amount than others take.I did initially also get joint stiffness/discomfort most noticeably in the morning. I found walking daily for 1 hour helped a lot with this as you can walk thru it after10 minutes.I also joined a gentle exercise class for 1 hour twice weeklyinvolving light weights. I am hoping the exercise also helps with osteoporosis.Weight bearing exercises are being researched by the Bone. Clinic and Griffith Uni in Qld.They have had remarkable results with their program reversing bone loss.I do have the occasional hot flush which can be both inconvenient and annoying but having that twice before it’s not too much of a problem,You may also find increased facial hair as well as hair thinning on the head as Letrozole aims to knock over any remaining oestrogen - these effects are usual side effects of menopause and manageable. The hair loss that upset me most was eyebrow thinning but eyebrows are big in the makeup world these days and there are better products on the market these days than the old eyebrow pencil that give a natural look - I use Modelco More Brows available from Woolies around $14..You can go for a permanent fix with eyebrow tattooing as some on here have done .My biggest concern is the more than doubling of my cholesterol . I take daily low dose aspirin and eat rolled oats for breakfast daily - the latter does reduce cholesterol.My oncologist suggested Krill Oil tablets if I had joint pain and it has the additional benefit of thinning blood as does aspirin.I think Letrozole plus Prolia is my best chance of preventing recurrence so persist and try to resolve any issues that crop up either with my onc , gp , people on this blog’s advice or just. common sense.I like natural supplements but always check with your doctor before starting as some may conflict with your treatment. Eg Curcumin is popular here for arthritic pain but not wise if on warfarin or chemotherapy.All the best - there are many on here who will step to help if you have any issues including me - just ask when you need helpPs There has been a lot on this topic the past 18 months or so - you can research past entries on the blog.

And so by dawn's early light the next ten years begin...Dramatic much?!

Ladies I hust wanted to let you know I had really really stiff ankles on ketrizole initially. I used to do rotation foot exercises in bed before attemoting to standing and initial steps I was waddling. I have an internal step heading to the loo and it was hell getting down that step first up. Thumb pain was an issue. But 6 months on...it settled. I was having fush oil and regaular panadol but with ibcreasing my exercise and dropping weight I need none of it now. I notice my ankles now when swimming....flippers make them ache more and if I try to use swimming gloves for extra resistance. But mostly....i can leap out of bed now...get yp and down steps with no issues and just swim without flippers. I'm 2 years since chemo and wonder now if some issues were taxol hangover stuff. Our body might well adapt too. Kath x

It's Letrozole For Me | BCNA Online Network

310 Replies

Romla
Member
8 years ago
Have a look at vitamin d3 on the Herbs app @kmakm and @arpie Am giving up Caltrate - never understood why I had osteoporosis when I was a dairy food junkie ie large intake of calcium but being very fair avoided the sun like the plague and D3 is the sunshine vitamin - very good for bones and also prevention of breast cancer I read.Not saying it is the be all and end all but very interesting in my circumstances esp osteoporosis.
arpie
Member
8 years ago
OMG! IF they want to take Letrozole to become a better athlete - I can't imagine HOW the aches & pains etc will help apart from conditioning themselves to continual pain! There are some dumb people out there, I reckon!

I have No coccyx pain, Kate - but I now have quite major foot pain on & off (in the ball of the foot as well as my bunions which is quite debilitating,) continued Shoulder pain, hands are still stuffed, and an ache behind my left side that has settled for now.

Sleep has been stuffed the last few nights ..... possibly a couple of small hot flushes sneaking in .... not entirely sure.

Hopefully I'll 'get used to it' soon

I hope that coccyx pain stops for you, Kate - that would be HORRIBLE! I actually broke mine in a snow skiing accident 40+ years ago & I can STILL remember how painful it was - for MONTHS! :(

FUN FUN FUN ....... NOT
kmakm
Member
8 years ago
@"Kiwi Angel" Extraordinary! Started yesterday, I shall let you know...
Kiwi_Angel
Member
8 years ago
How interesting - u will be toned as when u start your exercises ;)
kmakm
Member
8 years ago
:o :o :o

https://www.theage.com.au/sport/tennis/former-world-no5-sara-errani-blames-tortellini-for-failed-drug-test-20170808-gxrguo.html

Her ban was increased to 10 months yesterday. So if anyone out there is parenting an elite athlete, be careful...

If you're a body builder, have at it!!
kmakm
Member
8 years ago
Thank you @Glemmis. I'll see what happens over the next couple of weeks and take it from there. Can't have baths yet because of my suture abcesses... Now that it's winter and I have aching bones I really want one!

I Googled Letrozole and coccyx pain and got quite a few results. So it could be a thing. I don't see my oncologist for over a month. I should know for sure by then.
Glemmis
Member
8 years ago
Hi @Kmakm, I developed very bad lower back pain about 2 months after starting Letrozole & put up with it for some time worried it was something sinister. Eventually it went, that was 12 months ago & then recently developed it again although not as bad. I think cold weather aggravates it. Hot baths with magnesium help & heat packs. i wouldn't worry too much unless the pain is ongoing & bad enough for painkillers. My oncologist said if pain wakes you in the night or doesn't go away with rest there may be something to worry about & if you do enough research you will find other people have back pain too with Letrozole. Hope this helps.
melclarity
Member
8 years ago
Hmmm nope ive been on 3 different meds in 7yrs and none have caused that Kate. Must be something else going on i think.
Anonymous
Not applicable
8 years ago
The user and all related content has been deleted.
kmakm
Member
8 years ago
Has anyone taking Letrozole had coccyx pain? It's come on strong and hard in the last two days. It renders me momentarily completely immobile when I try to move from a sitting position I've been in for a while. It was very embarrassing at the plastic surgeon's today. I went to get up and couldn't. He and the nurse stood and watched as I mumbled excuses and persuaded my body to work. I think they were as shocked as I was.

I haven't read any mention of coccyx problems here. Is it the Letrozole or have I got something else going on?

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