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

Brenda5
Member
8 years ago
6 hours on the water, omg. I have to sort of roll out of the yak to hands and knees to stand up after only two hours. I haven't been lately as its cold now and I really do not want to get bronchitis again which took 2 months to get over this time. In answer to an earlier question on cramps, I do take high dose magnesium and D3 and still manage to get cramps if I don't take potassium or eat bananas. I have a few more months on Tamoxifen yet before it is likely I will be put on Femara. Not fussed if it means another one of those bone scans as they are terrifying for me. I hope your lumps turn out nothing. I have something similar and can only feel it in a certain position but according to scans a few months ago, it is nothing and it hasn't gotten bigger so it must just be a quirk.
arpie
Member
8 years ago
So Femara is the same as Letrozole (or just similar?) Just surprised it isn't named on the table on it's own (or in conjunction with Femara.)

Wouldn't you HATE to be the poor bugger who gets ALL the symptoms!! Obviously over the years, those side effects have been reported by thousands of women for them to be put ON the list .... and there are others that probably haven't MADE the list too, as it is such a personal thing - everyone reacts differently to different chemicals.

SO .... I've been on Letrozole now for 1 whole month & am definitely feeling a LOT more achey - specially my hands (which were already bad) and surprisingly, my shoulders as well! I've had aches down my side & around my lower back (I almost thought I may have a kidney infection! It has gone now.) Also general back ache - it must look hilarious as I try to get up off my kayak after 6hrs on the water ..... It take a few minutes for me to push myself off the yak to a standing position!

My FEET have been ridiculously sore too - as if all the bones have been affected. Previously, just my bunions would get super sore (I couldn't put any weight on that part of my foot - and it would dissipate after a few minutes.) But the whole foot ache - lasts MUCH longer. :(

Hopefully this is the worst of it .... only time will tell

I'm seeing my GP on Wed to double check my left boob now ..... I soaped up my hand yesterday (makes it MUCH easier to slide & glide) & had a little check in the shower & I found a couple of lumps .... so fingers crossed!! I've 'always' had 'lumpy boobs' (as well as dense ones) - so hopefully this is just what's always been there.

Interestingly - I couldn't feel them if my arm was by my side. I had to have my elbow pointing to the ceiling to feel them (as shown in my little Breast Check Guide that lives in the shower .....) on the lower part of the boob.
Kiwi_Angel
Member
8 years ago
@melclarity the website I use (the same one the professionals use does list it as a side effect.
melclarity
Member
8 years ago
@kiwi Angel yes thats what I was saying that its not listed for tamoxifen yet it happened. As did other side effects that arent listed for Arimidex or Aromasin so not very accurate for me.
Kiwi_Angel
Member
8 years ago
@melclarity I did see that eye issues can be a result of tamoxifen - hope I don’t get that, I’m already suffering from very watery eyes from chemo - I worry people think I’m crying all the time ;)
melclarity
Member
8 years ago
I do think they are under researched, my Oncologist said there is very little difference between Arimidex, Aromasin or Femara to take your pick, it's marginal and dependent on your genetic makeup which will cause the lesser symptoms. My vision problems came after being on Tamoxifen. Realistically too I think...it is very hard to know exactly what things are attributed to. the medication, chemo, age, menopause OR all of the above :)
kmakm
Member
8 years ago
@melclarity @Romla I am experiencing dry eye as well. Irritated eyes and a very dry mouth & thirst. Plus some constipation & intermittant nausea and a touch of dizziness. I hope my body adjusts and these all settle down.

As you say, some of these could be attributed to other things. But my hot flushes are sweatier than they used to be... It's so hard to know.
Romla
Member
8 years ago
It is indeed interesting @melclarity as I now have major eye pressure problems which has required quite a bit of surgery since starting Letrozole . I think the AIs are very underresearched as they are newish and we might all be part of a big clinical trial exploring them further to our cost and not just financial.
melclarity
Member
8 years ago
@Romla that was certainly interesting, I'm not sure I totally agree with it though LOL. As Ive been on 3 of those 6 and ended up with high cholesterol, I also got vision problems and dry eyes, maybe a little weight gain, increased sweating yet the ones Ive been on it isnt a side effect?
Romla
Member
8 years ago
Here it is @melclarity
http://www.breastcancer.org/treatment/hormonal/comp_chart

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It's Letrozole For Me

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