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

arpie
Member
8 years ago
Whay a Bugger about the hot flushes in particular, @kmakm, I hope they settle down for you soon. :(

Sending you some big virtual hugs ... cos a real one would make you too hot!! :(

So far that has avoided me - I’ve just got the increased aches and pains all over. ... I reckon all the hot flushes got sucked out of me during my 10 years of menopause that finished 10 years ago!? Tho I DO have a weird pain in behind my right rib just now (same side as my procedure)

@melclarity I am SO sorry you are in distress with the hot flushes in particular, compounded by your work as well, even tho you love working, ... I seriously can’t believe that there isn’t SOMETHING to control this condition! It is not like it is something ‘new’ FFS!!

Maybe BCNA could agitate for more funds to be put aside for SERIOUS research into this specific area of hot flushes, as it is so debilitating both physically and mentally! God knows it is needed .... and the research may also help women just going thru normal menopause as well!! I remember being a screaming wreck throughout my whole menopause period with the whole gamut ..... frequent tears, depression, hot flushes, unexplained anger/rage .... about the only thing I didn’t get was the heart palpitations! :(

take care xx
kmakm
Member
8 years ago
@kezmusc I hadn't really thought about pain medication to knock me out for sleep. I'm fine with codeine, though it does impact my bowel which is already struggling due to Letrozole. I'll give it a try.

The doona flapping is insane eh? 10 minutes a time (at least) I'm lying there naked and sweaty. It was 2° overnight here. And then all of a sudden I'm freezing!

I really want this website to have an eye roll emoji...
kezmusc
Member
8 years ago
I reckon my flushes are worse in winter than summer as well. It's been pretty cold this last week so I am cold, have a hot shower before bed and snuggle up. Within 10 mins serious overheating and kick all the blankets off and I'm laying there naked in 3 degrees sweating! 10mins later back down to freezing, back under the blankets then repeat. Seems there is no in between. Stinks when you can't regulate your own body temperature. Can you take codeine? Mersyndol seems to be the only thing I can rely on to knock me out after about 3 nights of next to no sleep. Obviously can't live on it and I don't take it more than twice a week, but it may help occasionally just so you can get some rest. Fingers crossed for you lovely that it backs off soon.

xoxoxoxo
kmakm
Member
8 years ago
My hot flushes, which post chemo had settled into a bearable half dozen a day of low to mid-strength with only the occasional big one, have now also revved up again. At precisely the same time as the joint pain got worse. Clearly with the oestrogen being leeched from my body I reached some kind of tipping pount round the three week mark. My last three nights sleep have been appalling. I've been woken four to six times a night with huge, sweaty, boiling flushes that go on for ages, much longer than before. I'm not sure I can sensibly function in any real capacity with such broken sleep. I'm desperately hoping that it will settle down at some point soon.

@melclarity I'm so sorry nothing really helps you. Sending you a big virtual hug. K xox
melclarity
Member
8 years ago
@kmakm yes this is my experience on Arimidex and Aromasin, it hasnt changed in 2.5yrs, exercising doesnt change it at all, makes me feel better mentally that's all. Having said that Im not taking osteo panadol everyday either, and I'm working 5 days a week....feeling I am struggling though with it to be honest. I really do have wondered though and I asked my Oncologist if it is the combination of chemo and then the meds, he said unfortunately yes. This is why his report to the Income Protection said I would never be rehabilitated enough for full time work as long as I am on meds. I have to work, I also want to as well for my sanity I suppose. It doesnt go away completely you are right but the osteo takes the edge off, Im on my feet all day so even strengthening my legs riding my bike doesnt help the ankle/feet pain I live with. What can you do? he said you can come off it anytime you like, up to me and that's the alternative. I have a very different mindset I think having already had a recurrence after doing 'all the right things' I CANNOT imagine how someone who also has done so, is now facing metastatic breast cancer. x
kmakm
Member
8 years ago
I'm sorry to say my ankle pain is getting worse and is creeping up my legs. My coccyx is worse and it's possible my wrists are starting. Fortunately at this stage osteo-paracetemol is helping. Doesn't get rid of it but definitely takes the edge off.
kmakm
Member
8 years ago
@kezmusc Noted. I'm feeling the urge to sleep with a pillow between my knees. I might play around with some cushions & see how I go. Thanks lovey.
kezmusc
Member
8 years ago
@kmakm, I have found that sleeping with a pillow (just a soft one that's not real high) under my knees and a boomerang pillow to lift my shoulders slightly really helps with the hip and lower back pain. I am normally a side sleeper but this works if I can't sleep on my side. If I do I will put the pillow under my left (sleep on my right side) that extra bit of support takes the weight of my hip and lower back. Might be worth a try.
kmakm
Member
8 years ago
I am 52 and did not have coccyx pain before this month. I will give that exercisec a go @Primek. The pain can be quite sharp when I try to move after it's locked up. Sharp enough to make me yelp.
Anonymous
Not applicable
8 years ago
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