AIs , walking , joint pain - small tip
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If you are already menopausal the AI won't make any difference as far as hot flushes etc are concerned.
Aches and pains, well, that's a different story. Mine wake me at night, my legs are my enemies in the predawn hours. I find hot water bottles help when I am in bed, but there is nothing like a hot bath to relax all those throbbing tendons and ligaments at the end of the day. I ended up building an outside 'bathroom' so I can soak in hot water without getting too overheated, which seems to happen inside2 -
@arpie Ihave been on Letrozole 8 plus months.
Yes it does like all Aromatase Inhibitors thin bones.I started with osteoporosis and had had an osteoporotic fracture so also have 6 monthly Prolia injections to counterthis effect.Mercifully the fracture meant I can access the PBS price of $38 and not pay the full price of $275. There is an alternative to Prolia called bisphosphonate tablets which I took briefly some years ago but I do not recommend - my teeth are not good and dental work like extractions and root canals are high risk on those tablets which stay in your system well beyond taking them.I had to have an extraction and found it very difficult to find a dentist who would help me - only Professor Goss here would after doing cross laps. This type of dental surgery whilst on bisphosphonates can cause osteonecrosis of the jaw.
Yes it causes joint pain so weight bearing exercises are critical .@Deanne has told us on here about the amazing work the Bone Clinicin Qld is doing building bone density with a weight program.
I walk daily for an hour -some days are harder than others but generally I have found I can walk thru joint pain and I really notice the difference if I miss a walk.I also do a gentle stretch and balance class twice weekly which includes a bit of light weights and again if I miss one I really notice the difference.
Before embarking on Letrozole I asked my medical oncologist what to take for joint pain and was told Krill Oil which I take daily along with 2 Caltrate Bone and Muscle Health as per the guidelines from the Australian Osteoporosis organisation available online.Krill Oil btw is a concentrated fish oil and Omega 3 which is good for the heart.
I should add I do get the occasional hot flush from Letrozole too. And also I think it brings on the blues but walking with its endorphin rush counters that.Letrozole may also create a bit of fatigue but then I need to slow down a bit but not the exercise.
Tamoxifen too has its side effects.Whilst you are waiting for someone else to blog use the search bar at the top of the page as there has been heaps online about Hormone Therapy these past months.
My view ? I too was very worried about Hormone Therapy at the outset.I am managing and will continue taking Letrozole as it is my best chance to avoid recurrence.1 -
Oops need to add I have not had chemo just lumpectomy and radiotherapy.It seems to me that people who have had chemo might have a bit more trouble with joint pain but that’s just my observation.0
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My experience has been that AI’s (I was on tamoxifen for 2 years before ovary removal and changing to Femara) caused an inflammatory reaction. I had a very painful big toe and a sharp increase in carpal tunnel issues. (Waking in pain and unable to even wind up my deodorant stick first thing in morning).
Things that have helped me are anti-inflammatory diet (lots of green leafy veges, reduced red meat, less sugar, salt and processed foods, limited or no caffeine and alcohol), weight-bearing but low impact exercise, curcumin, fish oil and magnesium. (Always check that any supplements are suitable for your individual circumstances).
For me, hormone therapy may make a large difference to my chance of staying cancer free (I was Stage 3 at diagnosis). Therefore it has been worth the effort to make changes that have given me improved quality of life while giving myself every chance of staying well. My carpal tunnel is almost non-existent now and big toe much more comfortable.
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@arpie one other side effects I have had from Letrozole as have others on here is a sharp spike in cholesterol.Hopefully Krill Oil and diet might help with that as am not keen on statins.My cholesterol both LDL and HDL has always been very low but apparently it’s the ratio between the two which is critical and mine was not good enough so I was put on statins.All was fine for about 4 months and then I started having trouble finding words when having a conversation and memory issues - I thought I had dementia.I read an article luckily in WW by Dr Kerryn Phelps and learned I was not alone many had experienced similar.They can change the type of statin to try and alleviate this side effect but I just came off them as was quite spooked. Very rapidly I returned to my normal self .I try to be careful with diet eg minimal cheese unless low fat , fish and chicken but minimal red meat etc and take Krill Oil tablets.@Deanne in my experience is correct diet does help with side effects but that said I am not perfect and do indulge but I try to watch my diet.Am su0
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@Zoffiel @Romla @Deanne
Thank you so much for all that - I will print off your answers & take them with me when I see the Onc Dr.
I will also do a search on AIs here & read up on it - for different individuals' reactions - so far, I've only read the BCNA booklet.
I had a lumpectomy (Stage 2) & radiation - no chemo - but like you, Deanne - the joint pain can be excruciating even BEFORE taking anything! I used to think my Aunt was being 'cute' 30+ years ago, by asking her husband to open bottles & things ....... now I understand fully, the pain that she was in!! I couldn't believe the pain in my big toe the other morning! I couldn't put any weight onto it at all! Luckily, I was going kayaking - and the coolness of the salt water when I was putting it in - soothed it down & so far, no more trouble!
At my initial consultation with my surgeon, knowing my shitty menopause & arthritis history - said to ''try the AIs - and if they aggravate my existing conditions 'too much' - just to stop taking them.'' From memory - he said it is an extra 1% 'insurance' on the cancer not coming back - which to me, doesn't seem 'that convincing an argument' if taking the meds makes your life miserable for 5 years??
Sadly tho - pretty well all of the women I know who started off with BC (bar one or two) have presented with another cancer within 8 years of surgery.
Colon, Lung, Kidney, Liver ..... which is absolutely NOTHING to do with BC ...... Luckily, They've all come thru that as well, which is very comforting!
Funny that you mention the statins Romla - my hubby is currently going thru 'dementia assessment' and a brain scan when I get back from Norfolk Island - and he is on 20mg a day & has been for some years now. He is very thin, always been a very fit triathlete - and NEVER eats the wrong stuff - so incredible that his cholesterol is always higher than mine (who sometimes DOES eat the wrong stuff! ;( ) I must bring this up with my GP next time about him - if going off them may help his mental state!!..... I have been on 10mg for a few years now - and went off them during my rads - and so far, stayed off them! I DO have some Krill Oil capsules so will start taking them again & already taking Turmeric for my arthritis.
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@arpie Curcumin is the refined version of turmeric and much stronger.However there are certain ailments this natural therapy is not recommended for eg if you take warfarin a blood thinner for heart issues.
I am a bit of a natural therapies fan esp garlic in winter but do be careful as they are not safe in all circumstances and some just make expensive wee. Here is a brilliant site @primek gave me and is recommended by BCNA that looks at loads of them and explains pluses and minuses in a non medical as well as medical practitioner option. It comes from a NYC hospital specialising in researching and treating all types of cancer - Memorial Sloan Kettering Cancer Centre . Well worth your time .
www.mskcc.org/cancer- care/patient-education/herbal-remedies-and- treatment2 -
PS @arpie there was a huge amount in the press in 2016 about side effects of statins you might be able to find it online. I am not suggesting going off them as I gather changing the type of statin can help.I did also read that they are the most heavily prescribed pill in Australia but maybe diet modification and exercise can also help.
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A friend's mum had the same as me at 65 - lumpectomy & tabs for 10 years (not sure about the radiation) and is now 95!! I like that (sort of! Not sure HOW I'll be at 95!!) A scary thought! LOL Her daughter can't really remember her having many side effects.
My sister in law has suggested I get a hormone 'test' done before I start - to see what my levels are now (which makes sense to me - cos if they are REALLY LOW .... do I even need to do the tablets?!) - and then get them checked yearly thru the process, to monitor the changes.
As I understand it, oestrogen is produced in the breast fat tissue & other 'fatty areas' in the body, even if your ovaries are removed?
So ... my question is - do 'larger' i.e. overweight women produce MORE oestrogen than smaller/slim women? Do larger women have worse side effects from the tablets? I wonder if any studies have been done on this?
I am off to Norfolk Island tomorrow to strum ukulele for a week or so ....I will not be home til the 24th .... so chances are, I may not have much internet access over there as their internet/wifi is very limited (they have their own network, and not tied in to Telstra or any of the others.) Any phone calls to or from the island can cost $20-30 EACH!!
Take care, ladies - give yourselves a BIG pat on the back for what you are going thru so bravely! And thank you for all your sage comments on all the forum topics. Great Stuff.1 -
Isn't it funny, just a new pair of shoes can make all the difference. I went in on the two for one sales and got two new pair so I am set for ages.
My hubby did the same and just went to BigW for the Dunlop wides in size 14. He lost one pair though. My son who usually has to pay nearly $300 for a good pair of shoes stole one of hubbys pair. At $39 that's a huge monetary difference and he said he can't say they are any different to the high cost ones. Just as good and 1/8th of the price is even better.1 -
@arpie I just remembered your husband was having a dementia assessment. I have been reading a lot lately about a woman called Wendy Mitchell who was assessed with early onset dementia at 58. She has just written a remarkable book called Somebody I Used To Know which many are talking about. I have bought a copy - you might like to read about it online.
https://youtu.be/Tlbw4Ci1Sho
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@arpie and anyone else who might be interested
About Somebody I Used to Know
THE SUNDAY TIMES BESTSELLER
A BBC RADIO 4 BOOK OF THE WEEK
Brave, illuminating and inspiring, Somebody I Used to Know gets to the very heart of what it means to be human.
What do you lose when you lose your memories? What do you value when this loss reframes how you've lived, and how you will live in the future? How do you conceive of love when you can no longer recognise those who are supposed to mean the most to you?
When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity. All at once, she had to say goodbye to the woman she used to be. Her demanding career in the NHS, her ability to drive, cook and run – the various shades of her independence – were suddenly gone.
Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know is both a heart-rending tribute to the woman Wendy once was, and a brave affirmation of the woman dementia has seen her become.Reviews
“A landmark book” – Financial Times
“Revelatory” – Guardian
“Usually the experience of someone living with dementia is lost; known only partially even to their loved ones. The miracle of this work is that it managed to capture the experience, and hold it up for the rest of us to see” – Telegraph
“Remarkable ... Mitchell gives such clear-eyed insight that anyone who knows a person living with dementia should read this book” – Siobhan Murphy, The Times
“The world could do with more Wendy Mitchells ... This is a book from which we can all learn” – Jackie Annesley, Sunday Times
“A lucid, candid and gallant portrayal of what the early stages of dementia feel like ... This memoir, with its humour and its sense of resilience, demonstrates how the diagnosis of dementia is not a clear line that a person crosses; they are no different than they were the day before” – Nicci Gerrard, Observer
“A brave and illuminating journey inside the mind, heart, and life of young-onset Alzheimer's disease” – Lisa Genova, neuroscientist and author of 'Still Alice',
“With humour, truth and grace, this book [gives] a unique insight into what it's like to live with Alzheimer's” – Spectator
“I am so impressed with Wendy Mitchell's attitude and ability to explain her experience - she is both an inspiration and a guide. I think this book will be extremely helpful to people who are trying to come to terms with dementia, in their own lives, or the lives of their family and friends” – Michael Palin,
“An absolutely compelling account of life with dementia ... A testimony to human spirit and ingenuity” – Jan R Oyebode, Professor of Dementia Care, University of Bradford,
“An extraordinary book about a little-understood disease. Awe-inspiring, courageous and insightful. I would recommend it to everyone” – Rosie Boycott, writer and activist,
“Nothing is more frightening than dementia, says Wendy - and yet, every day, she chooses to face her fears head on. By sharing her story Wendy challenges assumptions and ignorance about dementia. Read this amazing book. It will change a lot of people's minds about what it means to have the disease” – Professor Pat Sikes, University of Sheffield,
“This is an eloquent and poignant book. Those of us who have gone on the heartbreaking journey of losing a loved one to dementia have wondered what they were feeling. Wendy Mitchell's courageous and unflinching account lets us know” – Patti Davis, author of 'The Long
Wendy Mitchell spent twenty years as a non-clinical team leader in the NHS before being diagnosed with Young Onset Dementia in July 2014 at the age of fifty-eight. Shocked by the lack of awareness about... Read more
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