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

Giovanna_BCNA
Member
7 years ago
Hello everyone,

@Kmakm makes a very good point to us about the need to agree to disagree in regards to the value of exercise.
Primek and Kmakm, also make a good point regarding this discussion that it has gone off topic. I will therefore close this post and any further conversations can be started in a new post.

The debate around exercise is an important discussion to have with your oncologist and to make your own decisions from there.
kmakm
Member
7 years ago
Please, this is a thread about Letrozole. I really don't want the fight about exercise to begin again, and not in this thread which I started to share and learn about Letrozole.

Some of us, including the BCNA, believe that exercise can reduce the chance of a recurrence. Not prevent it, but reduce it. Others do not believe this. How about we all agree to disagree and leave it at that. Please?! K xox
Anonymous
7 years ago
The user and all related content has been deleted.
primek
Member
7 years ago
Ok. And just one last thing. It probably should have its own thread. I just wanted to show the difference in life expectancy over the centuary.

What we know now is the longer you live the more likely you are to develop some disease and particularly cancers.

If you have a look at life expectancy in early 1900s many women didn't even make it past 50. So yes....everyone has the rare very old grandparents but they were the minority.

So this explains also why more are diagnosed as more remain alive. I hope that makes sense. Kath x

http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Main+Features10Mar+2011
Romla
Member
7 years ago
Just to add to @ primek comments above

of ttp://www.breastcancer.org/research-news/do-hormonal-contraceptives-increase-risk

I was on the pill but fleetingly as it did not agree with me. I did note the following -

“Still, research suggested that older forms of hormonal birth control that contained higher doses of hormones were linked to a higher risk of breast cancer. “

I did however spend afewyears on high dose HRT - 2x100 oestrogen patches initially in conjunction with progesterone tablets taken 2 weeks in the month.The progesterone after a year of monitoring was found to be causing major issues for me - some women and I was told have trouble.I then had the patches above alone for a couple of years. After that period I was required to accept a Mirena IUD as part of a clinical trial if I wished to continue with the patches.I lasted 3 + months as yet again the progesterone in the IUD caused major problems.I then used a phytoestrogen principally Remifemin

I often wonder if the high dose oestrogen patches contributed to my breast cancer although I accept what @ primek says about other risk factors.There is no history of breast cancer in my family.
melclarity
Member
7 years ago
Well my Oncologist completely refutes it all and its logical. If exercise reduced risk of recurrence pretty much stats would be next to zero lol. I guess each to their own its not just my Oncologist who has said thiis but many Specialists at Epworth all say its in yr duagnosis and genetics exercise will not change yr genetics lol. But hey ive exercised before both and after both diagnosis...didnt change anything lol and the Oncologist said it wont. Oh of course i must be in the small percent that does relapse hmmm nothing to do with my genetics lol. Silly me I must ask majority of people i know as they have relapsed too sadly inspite of exercise. @iserbrown @Aggie I must be mistaken. Lol
primek
Member
7 years ago
Ok lets look at the pill.
It has protective factors against ovarian cancer. Research has shown that.

Hundreds and thousands of woman take the pill but the cancer diagnosis doesn't correlate with that. If it was as simple as that...well it would have been sorted.

Increased numbers are due to screening programs picking up more and those at stage zero that possibly would not go on to develop invasive breast cancer.

IVF does have slightly increased risk factors due to extremely high doses ... but not in breast cancer. Yes they did studies.

All cancers are more prevelant after 50. This is the age cell division isn't going as well and our body isn't as effective in dealing with the changes. Look around the chemo rooms and take stock at the ages.
Menopause can be the turning point for women who have cell changes as it can also mean surges in hormone. ..which might contribute to providing extra nutrition for abnormal cells.
Young women commonly have breast cancer that isn't even related to hormones, as are women of all ages.
It isn't our hormones causing breast cancer it's our bodies failure to recognise it. Breast cancer cells ...due to their nature rely on hormones to help reproduce. Hense why the recommendation to stop the pill and HRT immediately as it may be providing nutrition for the cancer cells and we want to starve them.

So ladies lets not panic about oral contraception. It actually only mimics natural hormones we have when pregnant. That little worry would have been one of the 1st things those cancer researchers would have studied. It's the obvious thing to blame.

The reality is ...they don't know.

What they do know is less people who exercise and lose weight (not necessarily get into HWR just lose some) after getting breast cancer has a reduced risk of recurrence. Not zero. Just reduced. That's something we can realistically strive for. And they were not minority studies. It was recently put up by bcna about the study only a few weeks ago.

http://onlinenetwork.bcna.org.au/discussion/18577/exercise-and-breast-cancer/p1
kmakm
Member
7 years ago
@Brenda5 @arpie I was asked a series of these questions at BreastScreen when I was called back for the biopsy. Have you been on the pill? Have you had children? Did you breastfeed them? Do you drink alcohol? How much per week? Notes were jotted.
arpie
Member
7 years ago
I was on oral contraceptives from my early 20s to mid to late 30s when hubby finally had a vasectomy ....

"Have you ever been on oral or injected Contraceptives?"

I wonder if they've ever included that on the question list once you've been diagnosed ...... it wouldn't be difficult for a researcher to collate the info!

Cos - there definitely seems to be a HUGE increase in the number of women being diagnosed - and I guess those in the mid-late 60/early 70s were the 'guinea pigs' ...
Brenda5
Member
7 years ago
I had been on oral contraceptives all my adult life except for a few years in having children. At 53 in 2015 I was diagnosed and was still on the pill. The doc said get off em, the cancer is feeding on it. My periods stopped immediately and I only got one more period during chemo early 2016 and that was it. No spotting, no nothing. Full on menopause. Still having hot flushes while on Tamoxifen today. I am up for review in October and will probably be put on Femara then.