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

Romla
Member
8 years ago
Krill Oil is fish oil - the tiny fish whales eat is Krill. They are a stronger Omega 3 than fish oil tablets and are 2 strengths 1000 and 1500. Curcumin I also understand helps with arthritic problems too but check to see no conflicts on mskcc. Eg not during chemo.
kmakm
Member
8 years ago
Krill Oil purchased and first one ingesting now.
Kiwi_Angel
Member
8 years ago
@kmakm - u poor thing. I have arthritis in my hip and that aching can wake me up sometimes in the middle of the night. It sounds like your pain is pretty much constant. Was so hoping it wasn’t the drugs but looks like it could be. I’m just waiting at my oncologist for my final appointment for awhile and have my big list of questions - I’ll also find out what tablet she is putting me in. I’m also going to ask about fish oils etc. I used to take them for my arthritis and it would probably help my poor heart recover after the chemo too. Hopefully this is just your body getting used to the tablets and it does settle down xoxo
kmakm
Member
8 years ago
I've just had a really bad night with ankle pain, and it also started aching in my knees and hips as well. I was going to give it a month before I started on the Krill Oil but I don't think I can last that long. My ankles are so sore, 24/7. When I'm moving I don't notice as much.

I've checked out the mskcc website for krill oil and magnesium. For the latter it says small studies have shown it can prevent bone loss in post-menopausal women, and reduce hot flushes and fatigue in breast cancer patients.

For krill oil, which my oncologist has said I can take as some of her patients have found it useful, it says nothing, taking you to a page for Omega 3, and joint pain doesn't rate a mention. Still, so many of you here have recommended it I'm going to give it a go. I'd rather try supplements than take paracetemol permanently for the next six months or however long it takes for the side effects to settle down. Hopefully not for the entire 10 years...
melclarity
Member
8 years ago
Magnesium is absolutely great for cramps, though I take it daily...was hard to hear all Specialists say it wont help mine at all...as the damage from chemo shrunk the sheath over all the muscles and theres only so much that a supplement can do. My damage is irreversible, and suffer body cramping and I mean everywhere randomly.

I don't like taking medication really, but what I take I researched and is absolutely bare minimum. Unfortunately taking 1 thing leads to another problem lol. Im for simplicity when it comes to treating side effects now. :)
Romla
Member
8 years ago
@melclarity the mskcc website is worth a look and recommended by BCNA .They are a cancer hospital in NYC and part of their brief is ongoing research into natural supplements .

Here is the web address if you haven’t got it

www.mskcc.org/cancer-care/patient-education/herbal-remedies-and-treatment

It’s not just herbs but vitamins , minerals - very comprehensive and thorough .

I know from my pregnancies and sons sporting injuries magnesium is very good for muscle cramps having had it prescribed by our gps.

I’m not a fan of Dr Google unless an authoritative source like a govt sponsored health site or recognised medical journal. Scarey how much trust is placed in the health section of supermarkets these days - it’s such a huge unregulated industry.
melclarity
Member
8 years ago
Thanks @Romla Magnesium isn't for bone health perse, Magnesium services over 300 enzymes in the body at a cell level to assist with rejuvenation. So its like an all over base level vitamin for everyone to help rebuild. Ive never heard of magnesium interfering with antibiotics and my GP has never said so. Super super hard, not everything we read is 100% true, uuugh I currently have high blood pressure and Dr Google said....Vitamin D in prolonged use can cause high blood pressure....hmmm. The GP doesnt believe so. I honestly believe that my side effects are attributed more to chemo and that had I not had that the side effects of the AI would be so much less to be honest. Its the combination of it.

x M
kmakm
Member
8 years ago
@primek I worked it out!
primek
Member
8 years ago
And I hope you can decipher my spelling errors. My phone typing is getting worse.
Romla
Member
8 years ago
I think you’re right @primek chemo side effects on bones linger a bit but it will come good as you have shown just may take some time and determination to see I thru .

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