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

SoldierCrab
Member
8 years ago

@kmakm
@Sister

2 precious ladies who have the strength to fight this bloody disease and all it brings with it....

HUGS and energy to get through this ....

Will you get thru this ... ? YES you will.... Why do I know that because like me YOU are both determined to be here for your families.

One to tell you its ok not to be ok and one to make you smile .... the Bitch (BC) picked the wrong women when it picked on us....
Romla
Member
8 years ago
PS @Sister try jungle surfing in the Daintree you’ll love it !
Romla
Member
8 years ago
Dear @kmakm and @sister there are crappy times because of breast cancer as well as just plain crappy times.Vent when you need to where it is safe to do so - on here , on paper and burn it or with a special person who cares and can handle it. Then as @SoldierCrab says time to put on the big girl panties again - you can and will do this .No doubt you will stumble again but then as Warrior Queens up you will get again - that’s life for all of us. There is no way I can see either of you doing otherwise. Whilst breast cancer has made you take a step or two backwards it will not stay that way - possibly it has also made you think more deeply about your life and what matters.You will do mad fun things with your kids again @Sister and your daughter’s health will get back on track @kmakm.Life ain’t over and it is good even thru shitty moments.xoxo
Sister
Member
8 years ago
Wild Ropes does sound "interesting" doesn't it @arpie? It's actually an aerial obstacle course over the animal enclosures at Taronga Zoo. I managed most of 2 courses when we were there 18 mths ago but baulked at the very last obstacle - a trapeze. I just froze and spent the next 20 minutes with everyone shouting out instructions and "encouragement". It wasn't until I told everyone to let me be that I was able to focus and get over it. Actually both an embarrassing moment and a moment of personal triumph.
Kiwi_Angel
Member
8 years ago
@kmakm. Your daughter sounds like such a sensitive soul and such a sweet girl - all of you have been through so much as a family and I can’t believe how strong u continue to be.

@Sister when I got diagnosed one of the things I thought was that it could be the one time being a stubborn bitch comes in handy. It sounds like I have that trait too. It’s thwt kind of strength and stubbornness they will get u back to where u want to be.
kmakm
Member
8 years ago
@Sister I think our moods are in sync. I have been getting progressively angrier and grumpier all week. I'm now stomping round with a face like thunder. I'm furious at this f******g life derailment.

I am now furious that you've been left feeling robbed of an identity that is so deeply valued and treasured. You're fighting hard to be there for those who love you the most but it SUCKS ARSE that you have to give up so much of yourself to do it.

I love your dogged gumption and I love the RAGE that bursts out of you from time to time. The Force is strong in this one! Sounds like a boxing class might be just the thing when the time comes.

This morning I took my 15yo daughter to the doctor. Two issues, bad periods and unusual hair loss. The best solution for her period problems is to go on the Pill. But guess what? She can't because of the family history of breast cancer.

The GP then asked her if there'd been any stress in her life. Bless her, she said no. I then interjected, pulled off my cap and said, actually six months ago I was diagnosed etc, and gave a potted history of the last few years of cancer and upheaval as a result of cancer. The GP explained that stress can sync the natural life cycle of you hair follicles, so that instead of falling out at random, a couplecof months later they all fall out together. This fits the timelime of my poor, sensitive, darling daughter's hair problems perfectly.

It devastates me, cuts me to the very quick. I know it's not my 'fault' but it's made me feel so desperately sad and so deeply angry. Why does she have to suffer? Is it not enough that I have??

Thank you for your side effect free wishes. I know you're not into hugs so I'm smashing virtual plates into the ground for you. K
arpie
Member
8 years ago
I just Wish I could be there to give you some hugs @Sister. .... don’t forget that ‘cancer’ IS just a word, not a sentence.

God Willing (or who/whatever else you believe in ....) you WILL get that adventurous side back into play .... with your kids tagging along .... Maybe your energy levels are just a bit slower in coming back ... eat what you fancy .... do what you love and are able to ....

DO tell us a bit more about the Wild Ropes!! My mind is in free fall just thinking about it! LOL
iserbrown
Member
8 years ago
@Sister - a rant that you needed to do - I hope it helps clear your head. We can't get back the last few months but hopefully this experience is making us stronger and more alert

Here's to many more days doing what you love sandboarding, skateboarding, or walking the dog or working or just smiling at those around you

Take care
Sister
Member
8 years ago
I am officially losing it - the previous post has been sitting there since the start of this discussion!

May your side effects be non-existent.
Sister
Member
8 years ago
One step at a time @kmakm - remember! It's hard, though. A colleague of mine was on Letrozole last year and going full steam ahead - I was shocked when I found out she was Stage 4.
I was just through menopause (which was annoying rather than difficult) and thought that was it. Now, I'm trying to adjust to a new reality and I'm so resentful and angry about what this has taken from me. I was always the Mum that would give things a go - sandboarding, skateboarding, wild ropes (blotted my copybook on that one, a bit). I can't see myself ever getting back to that level and I thought that I would be able to still be up for that stuff until the kids moved on. And that this is going to take the better part of a year of my kids' childhoods. [Insert scream of rage here] But I do intend to be here for them if I can do anything about it. And hopefully, I will find a way to live life as big as possible for myself with the limitations that bc has/will bring.

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It's Letrozole For Me

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