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
Thanks for that, @kmakm - I wonder which one my Onc will suggest as the most suitable one for me? .... yep, uke sure does keep me busy - thank god! I can't think of anything worse than sitting at home stewing over what is going on! Mind you, my sleep has gone out the window for the last 3-4 nights already - awake from about 3am on .... grrrrr

Both groups we played for today had a blast, singing their little hearts out & we got to act a bit silly too with some of the songs - all good fun! Tomorrow, two of our girls will be doing Hawaiian Hula for one of the groups .... it should be SO MUCH FUN!

Hoping your FIL starts improving soon! Decent Sleep is such an important part of recovery - and is also Nature's way of playing 'catch up'!

Hi @Eastmum .... That's Great that 2 of your kids play uke too - do you?? ... AND the Guitarlele!! Both my brothers & my sister now have ukuleles now too - we jam when we get together! :) I am up the Mid North Coast Way .... we are on Vimeo .... https://vimeo.com/user12132699 .... I haven't loaded any new ones since Xmas since my lumps were found .... I love doing 12th Street Rag - I am the short arse next to the big fella (Nov 2016 at Riverwood Downs.)

Which group does your friend play with in Sydney? There are SO many nowadays!! I just love it. Leading the group has really helped keep me sane & motivated after I was diagnosed on Jan 5 - they have just been SO supportive.

Sadly, One of my Uke guy's wife has just been diagnosed BC in her left boob (15 years after her first procedure on the other) & it may be metastatic as it was found via a rib biopsy as she'd been having pain for some time - we'll find out more details very soon :( Life is SUCH A BITCH sometimes! :(

All the best to those starting out on AIs ..... (or currently going thru it) - may the benefits be HUGE & the side effects SMALL! ;)
Eastmum
Member
8 years ago
@kmakm - sorry to hear that your FIL had a bad day - it's just another thing for you to worry about - you sound like you're full on back into doing everything around the house! When do you go to see your 'interesting' plastic surgeon? I had my PS appointment today - he told me I'd have to wait at least 6 months after my last radiation for a DIEP or 12 months for implants, so by my calculations that puts me at least a year away from now. Think I'll be damn good friends with my expanders until then - think I'll name them too @nikkid - but not Brenda, I know too many Brendas! - I hope they stand up to all the pounding they're going to get!

@arpie do you have any videos of your uke-ing? I have a very good friend who plays in a uke group - are you in Sydney? How funny if it were the same one! Two of my kids are uke players - we even have a guitarlele :smile:
kmakm
Member
8 years ago
Other way round @arpie. Though Tamoxifen can be taken by post-menopausal women if they can't manage the AIs. At 51 I am the average age for menopause in Australia but wasn't there yet. Chemo pushed me into it and my oncologist tested my FSH and LSH levels (the ovulating hormones) and they are currently very low, so I am currently medically menopausal. My onc said I could take either but Letrozole got the nod as she said AIs are better than Tamoxifen. She'll keep an eye on those hormone levels with three monthly blood tests and suppress them if required.

If you are going onto an AI you definitely should have a bone density test, a DEXA. You should also get a your cholesterol checked regularly as Letrozole can make it go up. Heart problems are not listed as a side effect.

Sorry to hear about your aches and pains. I am joint pain free so am trying to enjoy possibly my last weeks of this :/

Yep, it never stops in my family. My poor father-in-law had a rotten day yesterday. He slept for most of it, and seemed to revive a bit in the evening thank goodness.

Happy ukeing! It sure keeps you busy :) K xox
Kiwi_Angel
Member
8 years ago
Thanks @arpie. I have heard that tamoxifen is either for ore or post menopausal and the other one u have to have been through menopause. My oncologist said something to me about testing after chemo to see if I have gone through menopause as I don’t know. Was on the mini pill so didn’t have a period for 2 years before this. She also mentioned removing ovaries as an option. Have a good day. I’m sure you will be a ray of sunshine for the oldies today xoxo
arpie
Member
8 years ago
Thinking of you as you start taking the Letrozole, @kmakm .... and hoping that your pain & discomfort is lessening with each day too.

I am just wondering if Tamoxifen was discussed as well?

Is Letrozole more for pre menopausal women & Tamoxifen for post menopausal?

I had my Vit D checked on Fri (along with everything else) in readiness for my Onc appointment on Thurs ..... I didn't even think about a bone density test tho!! Makes sense!! Will see if the Onc will recommend one. That's great news that you have good density!

My GP also said that the heart can be affected as well ...... just something else to keep an eye on!

This cold snap has exacerbated my 'already' arthritic aches & pains .....

Take care - I hope your FIL is recovering from his surgery too! OMG SO much going on in your household! :(

@"Kiwi Angel" - hoping that you are feeling better after a big day yesterday! Have fun with your yoga .... take it easy initially tho .. work back up to it slowly. ;)

Hugs all round - I am about to head off to my uke gigs at Old Folks homes - 2 x today & 2 x tomorrow! (And it is RAINING! :( )
Kiwi_Angel
Member
8 years ago
@kmakm - glad to hear u are doing well - I’m feeling better today - out for Mother’s Day lunch - did too much this morning so stuffed now. I’m pretty excited only one more to go!!
kmakm
Member
8 years ago
@"Kiwi Angel" Thanks Steph. Recovering OK (I think! Nothing to compare it to... Looking forward to seeing the surgeons thiscweek to hear what they say). I can't say I've noticed it getting easier this week. In fact because I'm moving round more than when I was in hospital it's quite sore, particularly later in the day. And the glue is making me itch like crazy! Never mind, I'll get there. Onwards and upwards.

You're coming out of the fog a bit today I hope? One more to go. I didn't feel joyous when I was where you are, but boy, does it feel good now to have it behind me. K xox
Kiwi_Angel
Member
8 years ago
@kmakm. Hope u r continuing to recover well from your surgery. I probably have about 2 months before the dreaded tamoxifen starts. Big hugs xoxox
kmakm
Member
8 years ago
@Eastmum So good to do it through chemo, helps with those pesky side effects :)
Eastmum
Member
8 years ago
I'm actually exhausted already just reading this post @kmakm I'm in awe of your ambitious plan of action! Hope all is well with your FIL - kidney stones can be incredibly painful I believe.
I've gotta stop putting off that exercise!

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