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
We're doing everything we can @Sister. Stay strong. K xox
Sister
Member
8 years ago
I feel the same @kmakm. I was 13 and home with my Dad when he died of a massive heart attack - screwed me up for years. I watched the effect that my sister's cancer had on her 2 kids as they were growing up. I never wanted this for mine which makes me more desperate to stay around and be there for them for many years. I hope it helps build empathy and resilience but without too much cost.
kmakm
Member
8 years ago
@iserbrown Yes indeed. I've seen behavioural changes in my niece and nephew but my daughter is a still waters run deep type person. I'm not surprised that she internalised the shock and stress. I have made sure that over the last six months we've had lots of cuddles as we normally do. My heart aches for her. For both my womb kids. From 2012 to 2016 they watched two aunts die slowly from cancer. They saw my sister-in-law just about every week of their lives. No one significant died in my life until I was in my late twenties. My hope is that it will help shape them into empathetic caring humans, but geeze, I wish this hadn't happened to them.
kmakm
Member
8 years ago
@Sister Rant away. It helps to let it out. The Great Ocean Road treetop walk & ziplining is fantastic. There's a dinosaur walk on the ground which the littlies particularly love. Great spot, and the ziplining is a sit down affair. Only an eight hour drive ;)
iserbrown
Member
8 years ago
Unexpected side effect your daughter being stressed and her hormonal health being affected
Sister
Member
8 years ago
@romla Just had a look at Jungle Surfing - I'd love to do that! There's some ziplining down on the Great Ocean Road, too!
Kiwi_Angel
Member
8 years ago
@Sister I’m guilty of getting sidetracked and going off on a rant as many of us do on here sometimes when the emotions get w little overwhelming.
Sister
Member
8 years ago
@romla I've never been to the Daintree - jungle surfing sounds great (as long as it doesn't need arm strength!).

@SoldierCrab You're right - I can't bear the thought of not being there for the kids. And the second quote is so apt.

@kmakm I've thrown some virtual plates, scared anyone reading my blog (that's where they see behind the mask), and spent an evening watching "Victoria & Abdul" with my eldest daughter and eating chocolate. But I do send hugs to your beautiful daughter.

And thank you to everyone for being so accepting when I digress and rant - it seems to make perfect sense as a comment at the time and I don't think I can help it.
kmakm
Member
8 years ago
Thank you @"Kiwi Angel", she is indeed the sweetest most captivating girl. It is most terribly hard to see her suffer.

@Romla Sensible words as always. I'm having a bad week, not just on the recovery front (three weeping lesions now and spotty flaps... and some people want to call this cosmetic surgery :#), but also on the kid front. I will keep plodding on, life is certainly better than the alternative. I just wish I could have a year or two of clear blue skies.

@iserbrown What was the unexpected side effect?

@SoldierCrab Thank you. You're right, I've thrown the kitchen sink at this so I can be here for my family. I feel the need to throw stuff quite a lot these days... Love the second quote you posted! K xox
iserbrown
Member
8 years ago
@kmakm now there's an unexpected side effect. TLC for you both
Take care

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