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
@Zoffiel you have opened up with others an important discussion topic that we all need to know/think about. Any chance that this part of the thread could be under a separate thread of its own as I think there could be much interest in it ? Apologies to other members who contributed on Zoffiel’s topic just too late to type you all in hope is ok.
primek
Member
8 years ago
I had coccyx pain well before I started letrozole and it happens now after I have extended days sitting...like flying then a conference etc. Exercise is the best for it and stretches. Laying on your back knees up but feet on floor. Bring one leg up and rest ankke on thigh and press your knee outwards. It stretches the hip flexes. ..which if tight limit the coccyx. Repeat on other side. I have arthritis all through my spine which gives me no pain unless I sit around too much.

I took fish oil for around 8 months. Panadol osteo for around 4. I think the taxol contributed to my pain to be honest. I rarely need it now.
Anonymous
Not applicable
8 years ago
The user and all related content has been deleted.
melclarity
Member
8 years ago
@joannie exactly and thats what my oncologist put in a report to my insurance. The income protection has finished and i am now back working full time because i have no choice. He said whilst on meds i will not be full capacity and they asked for how long...he said probs 10yrs. What a joke we are nothing in the eyes of centrelink believe me but gee they support other arenas well dont they?
Anonymous
Not applicable
8 years ago
The user and all related content has been deleted.
Zoffiel
Member
8 years ago
Don't get upset about this @melclarity. BC is a constantly evolving feast.

In the past I've used my personal experience to advocate. I'm an old hand at making myself comfortable and waiting. I'm excruciatingly polite and come to medical appointments and other such inconveniences well prepared with diaries, books to read, boxes of records and wireless hotspot.

Documenting interviews changes the dynamics. I behave well even though it is not my default factory setting. It is not until some twitsack assumes that I'm passive that my horns start to grow.

None of this experience is wasted, shitfight as it might be. You can't demonstrate the options are shite until someone explains them to you.

The stew is brewing. I may be broken, but I'm not done yet.
melclarity
Member
8 years ago
@zoffiel I actually wish on our posts there was an angry button!!! Grrrrr absolute f wits! And this BCNA is the BS we have to deal with while just trying to manage this path. There are no words right now i am so incredibly angry...and upset
Sister
Member
8 years ago
Actually, @zoffiel, it sounds reportable. If someone was desperate enough and didn't understand the implications, that would be criminal.
Zoffiel
Member
8 years ago
There's more. During the discussion about finances, or lack there of, when I said it was getting difficult to pay things like insurance, genius #2 suggests if I can't insure the house it would be safer to sell it 'So you don't lose everything if there is a fire. Then you'd be able to get rent assistance.' Is that not means tested? Ah, yeah, it is.

Can you imagine what happens if anyone is dim witted enough to take their advice. Stop the meds and sell the house. We will get you a job through a DES that only pays you according to your capacity. You will have money to live on until you don't, but, hey, we helped. Phffft. It would be funny, except it isn't.
melclarity
Member
8 years ago
@Zoffiel exactly as I was saying just before what my Oncologist put in writing to my insurance company :/ whilst on medication symptoms will not dissipate and so capacity to work full time is doubtful. Yes I am doing it, because I have no choice but really? the GALL of Centrelink after you explained having meds or ceasing them could cause a rise in progression FFS!!!! ridiculous!!! xo

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It's Letrozole For Me

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