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

tigerbeth
Member
8 years ago
@ arpie yes it was f*****g stupid thing to say .
I don't see him again for a few weeks , I'll see what unfolds at my next visit ,if he displays any more 'toolish ' behavior I'll look at seeing someone else .

I'm already resigned to the fact that I will have aching joints , as I already suffer with my hands & hips !! :#
arpie
Member
8 years ago
@tigerbeth. .... excuse the French, but that is a fucking STUPID thing for ANY Oncologist to say and sadly just shows how out of touch he is with Women’s health and his patient’s best interest. How DARE he tell you the here are NO side effects on either of them!

If you are VERY lucky, there MAY be no side effects. I think we will all find that MOST have ‘some’ side effects and only time will tell. 2 of my friends started off on Tamoxifen for 1 year, then put onto Letrozole after that. They were younger than me when they started it.

As with any health professional who has not gone thru the disease ... they are only parroting what they have either read or been told by other people, being their teachers/professors or patients they are treating .... they have no actual personal knowledge or proof of anything! I actually mentioned this to my Onc today - explaining why I prefer getting my direct knowledge and tips from this BCNA forum - for exactly that reason. I agree with @kmakm .... he IS an idiot. I think I would be seeing if there is someone else available to see? Maybe he is ‘very new’ to it?

Both my surgeon and Onc have said to try it for a reasonable time, but if it doesn’t suit, I can try something different - even if it is BEFORE my 6 week checkup!. Only time will tell.

The previous link I put up is a bit ‘old’ .... I haven’t read ALL of this yet .... but at least it Is more recent re Post Menopausal Women .... (4/18)
https://www.uptodate.com/contents/early-stage-breast-cancer-treatment-in-postmenopausal-women-beyond-the-basics
kmakm
Member
8 years ago
@tigerbeth I've read that about the coating as well and raised it with my oncologist last Friday. She said some of the coatings contained gluten which trouble those with intolerance/allergy in that area. Fascinating!

How on earth can he say no side effects?! I went to a BCNA information night last week. One woman spoke up about being on Letrozole and being unable to move her fingers without pain until late in the afternoon every day. Both my breast surgeon and oncologist have spoken to me about trying different AIs if I have trouble, and even Tamoxifen, as well as taking medication holidays. And as you say, so many people here. I'm sorry, but he sounds like an idiot.
Kiwi_Angel
Member
8 years ago
@tigerbeth - very confident in his assessment!! Maybe he should take tamoxifen for a while!! @arpie was just reading an article that said removing ovaries and then using tamoxifen for 5 years if u are premenopausal increases your off of it not coming back. It is xomething I was I’ll speak to my oncologist about. We r not having children and I must be close to menopause anyway. Don’t want this bloody thing coming back anywhere!!
tigerbeth
Member
8 years ago
@"Kiwi Angel" Had bloods done on Tuesday to help determine my menopause status too.
When I saw the oncologist he was comparing both & explaining the whys & where fors of both , then casually he pointed to one of them and stated "no side effects on this "

I felt like telling him to read this site & see how many people struggle!!! I do understand that many people are lucky enough not to suffer but really the confident way he said it was unbelievable !
Fingers crossed for us all ,that we are some of the lucky ones !! :)
arpie
Member
8 years ago
hahaha - yes, we can be Letrozole Sisters, @kmakm - I'll just be a few weeks ahead of you - so we can definitely compare notes!! It will be interesting to see how long it takes for the Hot Flushes etc to hit!! Hey - fingers crossed neither of us have horrible reactions ..... tho not holding my breath given the pain I am in already (that I usually only manage to ignore fully when either playing Uke or out fishing!! LOL)

How are you going, recovery wise - you've had such a big op ..... I hope you're keeping on top of it with your pain killers & all .....

@"Kiwi Angel" - all the best for your bloods & discussions with the Onc re which regime will work best for you ...... I actually forgot to ask WHY she reckoned Letrozole would be better than Tamoxifen (or vice versa!)..... I will ask in 6 weeks!!

Sadly, I am under no illusions that any of these treatments will prevent OTHER cancers from occurring at any point in time, as I have 6+ buddies who have succumbed to other cancers (& luckily had successful outcomes so far!) ranging from colon, liver, kidney, lung & metastatic BC ..... matter of fact, I only have 1 friend who HASN'T had other cancers within 15 years of the initial BC - but she is only 5 years post op/treatment ..... SO ... fingers crossed for ALL OF US!!! xxxx
kmakm
Member
8 years ago
@arpie No, not yet. My oncologist gave me two to three weeks more to get over my surgery. That was a week ago and I reckon I'll take the full three weeks thanks. So I'll start in two weeks.

Remember some people have no trouble at all, so fingers crossed girl!

I think we should keep this thread going my Letrozole sister, what do you reckon?!
Kiwi_Angel
Member
8 years ago
I’m getting bloods done tomorrow to check my menopausal state and decide which one I’m going on - my oncologist thinks side effect wise tamoxifen is the lesser of the 2 evils. Must be quite individual and I have read some ladies side effects can vary brand to brand depending on the coating on the tablet.
arpie
Member
8 years ago
@kmakm

And it's Letrozole for me too!!

Weird ..... Only Tamoxifen had been mentioned to me up til now ..... so I was sort of surprised - almost blindsided!! So we can now compare side effects as we go along - I got my first lot today & will start tonight!! I've got a bit of literature to read up on (from the chemist.) Mainly mentioning hot flushes & nausea .....

Hmmmm ... So now I'll have to do more research into Letrozole as I'd mainly concentrated on Tamoxifen!! This is a good one - Letrozole vs Tamoxifen!
https://www.nejm.org/doi/full/10.1056/NEJMoa052258

Given my age, cancer type, grade & surgery - I still have a 90% chance of surviving 5 years without recurrence & 82% @ 10 years - and the Onc today confirmed what my surgeon said back in Jan prior to surgery - that taking the tablets (whichever one!) - will only 'better my prospect' by 1% over 5 years & less than 1% over 10 years!!

SO ... time will tell - it is totally dependent on my toleration of the side effects - there is a chance I could swap to something else if needs be!

I have a Bone Density thingie to do before I see the Onc again in 6 weeks ......

Have you started your Letrozole yet? Will you continue posting 'as you go' here - or will you start a new thread?

FUN FUN FUN ..... NOT!!!

All the best .... xxx
kmakm
Member
8 years ago
What news on the AI @arpie? How did you go at the onc today?

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