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

Sister
Member
8 years ago
Wonderful news @arpie
arpie
Member
8 years ago
@kmakm
I've chatted with her hubby just a couple of hours ago - he is stoked, given that he had thought it was a death sentence. Their 2 other kids flew in today and they will spend the rest of the week together & the one daughter attended the Onc meeting today with her Mum & Dad - I am guessing the hubby had passed on his thoughts that it was going to be 'worse' than they thought to the other kids, hence them flying in - but they are a strong, close knit family with the one daughter living locally, the others interstate.

Yes, they can go to Norfolk at the end of May with as clear a mind as they can ..... I can even give some tips on where to go & what to see! :)

The Onc (who I will be seeing tomorrow for my own treatment) was very positive of a prolonged treatment - so fingers crossed, that is so. I will be dropping in on them on Tues after the family has left.

Tomorrow, I also catch up with my fishing buddy with Met Bone Cancer & another 'marvel' who is still alive a decade after they thought he'd die - after both bladder & bowel cancer - bags for both - he is still with us & such an amazing brain! He's not been well in recent months - with massive infections in the stoma - but he keeps everyone on their toes. A wonderful man.

Whilst you are still here right now, there is not only hope - but an expectation to be here for WAY longer!! ;)

My thoughts & prayers going out to everyone doing it tough just now ..... hang in there.

xxxxxxx
kmakm
Member
8 years ago
@arpie Bloody brilliant! So their trip can go ahead do you think? Have you spoken to her, how's she doing?
arpie
Member
8 years ago
@kmakm ..... my buddy has seen the Onc today - and whilst her condition IS terminal - it hasn't impacted her lungs or liver. She'll be having a brain scan 'to be sure, to be sure'. At this point in time, she will have radiation & HI tabs (no chemo) - so given that we/I knew it would be terminal - I think this has been one of the best outcomes that we could hope for! WIN WIN!! Phew!!
kmakm
Member
8 years ago
@arpie French excused. This disease is a horror. I hope your friend travels well for a long time to come. K xox
arpie
Member
8 years ago
Damn! @kmakm ... She is SUCH a lovely lady - she was at our gigs today with her hubby, singing along with us ....... I think we need a :( button too! :( Life is a fricken bitch sometimes :( Hubby knows that the prognosis is not good - not sure that she does. I suggested last week that their daughter go along tomorrow for 'extra ears and support' and glad that she is. I met the daughter last week at the Mother's Day gig we did (with both Mum & Dad performing!) so feel they will have stronger support now - when the 'not so good' news is delivered tomorrow. :( Just a matter of them now finding out the battle plan ...

I am also catching up with a fellow fanatical Kayak fisho on THurs after I see my Onc Dr (tho this legend has landed 50 marlin from kayak!! and has Met Prostate cancer in most bones) .... He has just finished his final chemo treatment today - and hopes to still get out fishing at every opportunity for as long as he can - his wife was on Norfolk with me for the Uke Festival. They are booked for a Bali holiday soon too.

Excuse the French, but F*CK F*CK F*CK
kmakm
Member
8 years ago
@"Kiwi Angel" @Arpie My oncologist gives me the EviQ handouts for every medication we discuss.
Kiwi_Angel
Member
8 years ago
@arpie glad u had fun :). That site is good - it’s the one that the medical professionals use so u know it’s accurate.
kmakm
Member
8 years ago
@arpie That sounds unlikely at this stage, fingers crossed for her.
arpie
Member
8 years ago
We had a BALL today at our Nursing Home gigs - SO much fun! We finished off both gigs with "Let's Twist Again'' and some of the staff got up & did the twist - it was just great.

@Sister
@kmakm
WOW! I thought I was alone on the memory thing ... and I haven't even had chemo, so can't blame that!! DUH!

I am just blaming so much stuff going on (or pre-occupation! I can remember 'some stuff' as clear as day - just not 'other stuff'!) Maybe it is just 'life' telling me what is important?? I just tell my uke buddies to email or message me EVERYTHING ... or else I just know I will forget!! :(

@"Kiwi Angel"
I have printed off both the Letrozole & Tamoxifen pages from that link and will take it with me - thank you - it shows the major side effects from both .... it will be interesting to see which one is suggested for me.

My uke buddy's wife will be seeing my Onc the day before me - sadly, she has just been diagnosed with Met BC
and will be going on chemo almost immediately .... tho I hope they'll be able to go on a holiday to Norfolk Island before it starts, as it is already booked for the end of the month. :(

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It's Letrozole For Me

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