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

kmakm
Member
8 years ago
@melclarity I've got 518 weeks to go...
kmakm
Member
8 years ago
@tigerbeth Eat up on grapefruit in the next four weeks!
tigerbeth
Member
8 years ago
Well its Letrozole for me too!!!!
Bone density test results good
Vitamin D low - so need pills
Fatty liver needs ultrasound !! Ugh !

Not starting the letrozole for 4 weeks ,when the rads finish .
And so it goes on …….
melclarity
Member
8 years ago
Since I started Arimidex and now Aromasin symptoms are the same. So I have hip pain, lower back pain, neck pain and the dreaded constant ankle/feet pain and I didnt have that when I did the 6 week trial off it as per my Oncs instructions. I think just have to put up with it and every year closer to ditching it, though I think this time round I'll be stuck for 10 yrs lol so 7 to go woohoo NOT!
kmakm
Member
8 years ago
@kezmusc I get a little pain in my knees and hips but I usually only notice it when I'm still. The ankles are painful all the time. I know it's the Letrozole as I had ZERO issues two weeks ago. The only thing that ached was my lower back from a bulging disc (thanks giant overdue daughter!). That's under control with regular walking.
Romla
Member
8 years ago
@kezmusc Curcumin is an anti inflammatory like ibuprofen without the nasty side effects of long term use and must be ok as Indians eat a huge amount of it in their diet.Just a thought as have been hearing good reports about it.Curcumin is the refined part of the spice turmeric which seems to be trendy these days.Have a read on the Herbs app before trying maybe as there may be some reasons not to use it -I think using blood thinners like Warfrain is one.
Romla
Member
8 years ago
@Brenda5are the cramps just low potassium ? I know from one sonrecently who is a gym junkie that low magnesium brought on major cramping -. He was using a well known protein supplement heavily which caused the cramping and was put on magnesium tablets to address the problem and suggested he desist from the supplement.I also remember strong cramps when pregnant years ago and also was put on magnesium supplements. Just a thought.
kezmusc
Member
8 years ago
Hey @kmakm,

Even though it's a different drug I have the same issue with hips freezing up if I've been still for too long. Lower back is crap as well. It feels like my spine is compressed and I need to be stretched! don't know why it targets the hips but I've read many stories from others that have the same issue. It started about 2 weeks after I began the Tamox.
Of course, I thought it was something more horrible and ran off for a bone scan. But no, it's the drug.

You will know I have been on a variety of supplements. They gave me Tramedol as well but that doesn't do anything either, Panadol osteo will ease it for about and hour. Ibuprofen gives me a couple of hours but that is a nasty thing long term so am hesitant to take too much of it.
GRRRRRR.....
Brenda5
Member
8 years ago
I get cramps when my potassium levels are low. I am supposed to eat a banana a day to bring my levels up but eventually I get sick of bananas and have to get a pill supplement.
kmakm
Member
8 years ago
@"Kiwi Angel" Ridiculous eh? I agree.

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It's Letrozole For Me

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