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

kmakm
Member
8 years ago
@melclarity Yep
melclarity
Member
8 years ago
Aaah yes, I too was slammed into menopause due to chemo, its actually the case for alot of us and is why symptoms are usually more intense.
kmakm
Member
8 years ago
@melclarity The conversation about AI side effects for people like me who have had menopause caused by BC treatment, being the effects of a hard slam into menopause by the sudden removal of oestrogen from the body.
melclarity
Member
8 years ago
What conversation @kmakm ? that the side effects are actually not medication related? but no oestrogen in the body? He was really great, one of my better checkups, he discussed ALOT of things and blew lots of theories, especially in reducing risk of recurrence! x
kmakm
Member
8 years ago
@melclarity @Sister I had this very conversation with @Finch yesterday!
melclarity
Member
8 years ago
@Sister I totally agree, and he wanted to explain and make it really clear when I was talking of symptoms, side effects and medication. It was a really super informative meeting and the depth in which is discussed alot of things made complete sense and really confirmed his expertise in the area. :)
Sister
Member
8 years ago
That's a really interesting explanation @melclarity It sometimes seems that the answers are there - we just need to ask the right question to get the response which can be hard when you forget or don't know the right question in the first place. And I think for the doctors, it's often a situation of not realising that the patient doesn't know something or in some cases, doesn't want to know.
melclarity
Member
8 years ago
@arpie Exemestane is Aromasin and I have been on that since about April 2017, prior to that I was on Arimidex for a year and before that Tamoxifen for 4yrs. So you are right Letrozole, Arimidex and Exemestane/Aromasin are all in a similar family, just slightly different. The Oncologist said that they usually switch between these 3 as everyone reacts differently to them all and so may find you cope better on a different one. To be honest I haven't noticed any difference between Arimidex and Aromasin, the symptoms I have are still the same really.

An interesting conversation with my Oncologist yesterday when he explained about the drugs, Tamoxifen blocks the oestrogen and sits in all the organs but irritates different parts of the body or can due to sitting there in the hormone receptors. Ai's are very different they completely get rid of oestrogen and are used for post menopause, the symptoms that you suffer is not from the medication but due to having zero oestrogen in the body. I found that super interesting! So they are menopausal symptoms and usually brought on in an unnatural way so they are worse. Some womens bodies require alot of oestrogen to function, others need hardly any, theres no 2 the same. So the more severe symptoms are is due to the body not coping with NO oestrogen. In addition to regulating the menstrual cycle, oestrogen affects the reproductive tract, the urinary tract, the heart and blood vessels, bones, breasts, skin, hair, mucous membranes, pelvic muscles, and the brain.

Thought this was an interesting conversation into why I also suffer joint pain being the most I guess, apart from that I find all symptoms annoying but not debilitating to be honest. Ive done 2.5 years now on an AI and he will reassess in 2.5yrs. :)

All the best with it, Melinda xo
kmakm
Member
8 years ago
Interesting @arpie. I hope Exemestane works better for you. K xox
arpie
Member
8 years ago
OK!!! So I've been taken OFF Letrozole as of today - and have been put onto Exemestane tablets instead!! They are a 'cousin' of Letrozole, but may cut out my aches & pains - the main side effect that I've encountered. The rib pain that I had, subsided after a week ..... no worries now.

SO .... if you have general aches & pains as your main side effect (hips, hands, knees, shoulders, body!) - ask your Onc about Exemestane instead - in case it helps - maybe I'll duck back on the thread to let you know!!! ;)

So ... I had my onc appt today - and then my GP .... I've been stewing over the 'new found lump' in my other breast for a while now, since we (my GP & I) found it but it took 2-3 weeks to get the appointments organised up at Port Mac! :( ..... the good news on the lump - is that they think it is a cyst (after Mammogram & Ultrasound in Port Mac on Monday), so I will be keeping an eye on it with another MG & US in Nov/Dec. The tenderness in the right nipple that I've experienced over the last few weeks as well (where the surgery was) is a seroma (fluid buildup) which is also to be watched - as it is a tad sore when I turn over at night - so it will be checked also in Nov/Dec. I see my Onc Dr again in 2 months! She is Italian and a real sweetie!

Sadly tho, my wonderful GP is moving to Melbourne! :( I am bereft! She has just been wonderful for Keith & I over the last 2-3 years and it was her magic fingers that found my lump in Nov, when I didn't even know it was there! :( She also put me onto my wonderful surgeon (even if he DID cost an arm & a leg!) ..... I hope she comes back to Forster one day. It is too bloody cold in winter down there in Winter & too bloody hot in Summer! :( Forster's loss is Melbourne's gain! Her name is Dr Karina Harris. She is a rather stout looking Russian lady (always wears black) with a young daughter - but is LOVELY & I would recommend ANYONE to see her! You can even drop my name if you like!! Roberta from Forster!

SO ..... I might start a new thread on Exemestane instead! I'd never heard of it before today!! Anyone else on it that you know of??

All the best to those of you who continue on with Letrozole ...... I'll see how I go on the new stuff - you may see me back here, if it doesn't work out! xxx

Please, PLEASE ........ DON'T be afraid of Letrozole (or the other AIs or any other Meds or surgical procedures) ..... EVERYONE reacts differently from one drug or another - you may NOT get any or many of the listed side effects - and I hope you don't! They HAVE to list them, just in case you DO!

My hoodoo was really the aches & pains - but I already had them to start off with, so they just got a bit worse. So if you don't already HAVE aches & pains - they may not get them too badly!!!

Take care & I'll catch you on the other threads xxxx

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It's Letrozole For Me

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