I had mylan as a brand for tamoxifen and found it great no side effects. I was of the understanding that for anastrozole the brand difference didn’t matter. Am seeing my oncologist on Tuesday so will ask.
Thank you that is really helpful. I would be grateful to hear what they say. X
Writing for my wife… had lobular breast cancer 5.5 years ago – surgery and short-term radiation were successful. Mammograms all good for 5 years.
Was told to take Anastrozole even though at 67 y.o. the risks were low for reoccurrence. At the 3.5 year mark, she stopped the Anastrozole due to bad side effects… bone and muscle pain, pelvis distress, etc. After stopping for 2 months those side effects went away, but then she began having a 24/7 “adrenaline rush” feeling throughout her whole body. It’s like her metabolism is turned on all the time. This has gotten worse over the past 2 years and three months.
Multiple doctors, specialists, tests, scans, trial meds, unexplained loss of weight (30+ lbs.) even though she is taking in enough nutrients (less than in the past, but certainly enough not to see this kind of weight loss). She cannot sleep, she cannot nap. Having severe sleep deprivation which of course affects everything else. She even saw a psychiatrist for due diligence, but he sees no psychiatric diagnosis – he too sees a “metabolic” component. He prescribed a drug for sleep (after numerous med trials) and only one helps, but only for about 4 hours per night, and it is now losing effectiveness.
We still have no diagnosis or treatment and she is getting worse. My wife’s Primary Care Physician is at a loss, and is not spearheading, advising or guiding us. So we are on our own. No providers are thinking out of the box. They stay in their silos, and only look at bloodwork (“within normal”), not the whole patient.
My wife has always been a strong active person (e.g., she and a friend hiked over 2,000 miles the first year of Covid); she does yoga, works out at the gym, takes 5-10 mile walks in stride. Now she spends much of the day resting in bed. She gets up to do some household things, a little laundry, etc., attempts a short easy at-home yoga routine, but can’t really do much, is not outside walking and now she is experiencing being triggered by the slightest stimulus – TV, bright lights, not to mention meds.
The Anastrozole after-effects have not been formally diagnosed, but it is a big “red flag."
We cannot find any research about the potential for this drug to cause these types of symptoms. We have heard through a friend of ours who knows a doctor who said that there is a ”quiet controversy” about Anastrozole, but no one wants to speak up because the pharmaceutical companies are so powerful.
We don’t know where to turn.
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Oh my - I’m so sorry to hear this. I have a friend who has very up and down health since BC treatment, but she’d had chemotherapy in the mix so has been blaming that. She did take hormone therapy but had such bad side effects she eventually gave them up despite her doctors disapproving her decision. Perhaps her recurring bad health is down to the hormone therapy she took? She has flare-ups of different physical problems and she can’t predict when she will be feeling bad so it’s impossible to book anything. When she’s bad, she can’t do anything much but totter around the house. She does have spells when she can function OK though. She found a more sympathetic doctor and has found that steroid treatment has helped her a lot. I recognise the description of docs not thinking out of the box - I was impressed that my surgeon wasn’t like that when I had a breast discomfort problem last year. He told me it was the effects of radiotherapy - and caffeine! He told me to give up ALL caffeine. Bit of a surprise but I did it and the breast pains improved after about 6 weeks - but I also found that my sleep improved immensely as a side-effect! The surgeon explained that caffeine (and also soya) has a lot of effect on us that we don’t always recognise - and in my case, on the radiated tissue especially. I gave up all caffeine - no tea/coffee - even decaffeinated. NO other doc or health care person I’ve seen has EVER heard of this diagnosis and have all been sceptical! I have substituted coffee with Whole Earth Organic No Caf which I now like better than coffee.
Can you somehow research what’s being done on the subject in other countries other than UK? I’ve found better help for me from Australia for example. The US might have more research - with different health-care funding, they might explore things differently from the NHS?
It’s so difficult for you to see your wife suffering, with no apparent help out there. And so wearing and disheartening for her having been such an active woman. So frustrating! I do feel for you both. Keep badgering the medics - unfortunately we often have to.
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Thank you for writing.
(Btw, my wife had no chemo.)
We are actually in the US… everyone who will answer says there is no research on this topic. Even in Europe we’ve heard they’re just starting to study this on primates. Lovely, right?
We’ve just last week started working with a Homeopathic MD (he’s also an internist) who’s been a homeopathic doctor for nearly 30 years. I’ve learned quite a bit about homeopathy since we looked into it, and it seems amazing and promising. Ironically, he had to get the medicine for this from the UK. (If interested, look up Samuel Hahnemann, founder of homeopathic medicine.)
We’ll see if it works for my wife.
There is solid science behind homeopathy, although most medical doctors disregard it. Other countries are way ahead of the US in this regard, including UK, France, Germany Switzerland, India. The US is way behind and you can imagine how things will degrade now. Funding for research, specially women’s issues will no doubt be cut.
A half-billion people in the world are using homeopathic medicine. Many more allopathic (conventional) practitioners are incorporating it into their practices. And these medicines are cheap and fast to produce.
But Big Pharma can’t patent homeopathic medicines, so no interest.
Thank you for the note about caffeine. I’m glad giving it up is helping you. I will look into Whole Earth Organic No Caf. Seems like it’s only available for sale from the UK? I’ll search deeper.
Anyway, I would never presume to tell a woman what decision to make, but I would suggest if one is prescribed Anastrolzole (Arimidex), weigh it carefully against your risk for re-occurrence… (grade, margins, oncotype score, age, etc.). It may not be worth the risk.
I feel you’re right about being more wary of blanket prescription of hormone therapies. I was told that I would be prescribed it and more or less expected to accept it. I was really surprised to find my oncologist was happy to discuss everything and for me to weigh my risks and make my own decision.
It’s been seen to lower recurrence rates and therefore save some lives and money, but from what you say, there’s not been much detailed further research. I wonder if there’s any data collected on just how many, and how much women are affected by side effects?
It’s interesting how people assess risk. Women are so afraid of recurrence they will take EVERYTHING offered them, despite the risks of the drugs themselves - and the often tiny percentage recurrence risk for some women. They feel they‘d never forgive themselves in case it did come back. However, the drugs are not a guarantee! Some women apparently are not even told their risk of recurrence - or haven’t understood it.
It seems to have been seen as a cheap panacea.
We used to have a homeopathic doctor in our local practice - a regular doctor but with extra ideas to compliment treatments. We also have known of homeopathic vets! Animals cannot be accused of succumbing to the placebo effect! Some farmers swore by them.
Unfortunately there was a backlash here a while ago and any alternative treatments including acupuncture, were purged from mainstream medicine. Short sighted I think. I still always take pro-biotics like live yoghurt when taking antibiotics which is what we were always advised back then.
Good luck with it all…
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I’m so sorry that your wife is experiencing this - it must be so hard for you both . I have also found this business of treating just parts of a person whilst not taking into account all of the other parts to be beyond frustrating. My Mum had a number of different conditions and treatment of one could make some the others worse and led to contradictory instructions and meanwhile Mum just went downhill. I heard of someone on here with complex medical problems who managed to get all her specialists to sit down and meet together to find a plan for her . I believe it was organized by her GP but I may be wrong.
I was on Anastrozole myself and abandoned it after 5 months due to side effects - mainly the joint pain. Thank you for the information you have given . For about a month after starting it I had an awful thumping heart - it sounded so loud in my ears and I found it scary . It was worse if accompanied by a hot flush and I thought it was largely psychological but I’m wondering now if it was something similar to what your wife is experiencing.
I work for the NHS but there have been several times that I have had to seek help elsewhere including homeopathy which did help me. Tomorrow I have an appointment with my Osteopath who does cranio-sacral Osteopathy and lymphatic drainage as well as the more conventional kind as I’ve had a viral illness which has left me with a lot of fatigue and a feeling of being off balance . The treatment she gave me a couple of weeks ago helped a lot so I’m hoping this one will affect some further improvement . The clinical evidence for cranio - sacral is not really there but it helped me 20 years ago when I couldn’t get over labyrinthitis . I guess you do what you have to do. I have heard that acupuncture is quite widely used in the US and as that can involve balancing energy etc it might be something that is worth trying .
I hope that wife gets some benefit from the homeopathy - it was a bit of a journey for me but definitely beneficial .
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I have benefitted from acupuncture in the past and know a doctor (now retired) who was a trained acupuncturist and offered it as part of NHS treatment where appropriate. He was prevented from doing it when there was a bit of an official backlash against ‘alternative’ treatments - although acupuncture has a long history and obvious benefits - pain relief in childbirth for instance! No money for drug companies though, but I believe that if men had to give birth there would be a lot more research on acupuncture and everything else involved!! Maybe some new, more crazy ‘alternative treatments’ muddied the waters for the more solidly based ones?
Unfortunately there seems to be a disconnect between primary cancer care medics and GP care in UK. You get signed off from the specialists and handed over to general practice, so do the specialists see the whole picture of how much side effects are affecting people’s everyday lives??
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I think you are right about women taking “everything” and not forgiving themselves if it came back. My wife felt like she shouldn’t take it, but listened to her oncologist, and my daughter and me – same reason. Do everything to prevent it from recurring.
Your point about animals not succumbing to the placebo effect is spot on. Homeopathics are being used in some small farms on strawberries and other crops and the yield is healthier and better tasting. there is a new film called “Introducing Homeopathy” which I watched on line but the link has expired. If you can find it, it is well-worth watching.
There is also a book “The Patient’s Guide to Homeopathic Medicine” by Robert Ullman and Judyth Reichenberg-Ullman – worth reading.
Thank you. Our GP has not gotten all the specialists to get to gather and develop a plan. The healthcare system in the US is broken. Practitioners stay in their “silos” – many practices are being bought by larger groups and some of them allow only 7 - 15 minutes per patient visit. It is all driven by money.
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We have not tried acupuncture – the book “The Patient’s Guide to Homeopathic Medicine” by Robert Ullman and Judyth Reichenberg-Ullman states that it has “been known to disturb homeopathic treatments in some cases, although may also have significant therapeutic value.” Suggested to discuss with your practitioner.
Actually that’s sounding very familiar x
I was recommended acupuncture by BCN and oncologist to help with hot flushes from Anastrozole. It worked amazing and 8 months on hardly have any and only very mild. It was through a local charity whose acupuncturists are trained to work with cancer patients.
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In your wife’s shoes I would be inclined to try acupuncture as it can have a ‘balancing’ effect on the whole body. The practitioner goes through your whole history beforehand. Our organs have an optimal time for doing their main work (eg bowels first thing in morning, etc) so that energy isn’t wasted with everything ‘working at once’.
The Chinese apparently use it as a regular seasonal ‘balancing’ system - to ensure optimal body function as the seasons change.
Perhaps it could gradually calm down her overactive metabolism? I can well believe it would interfere with another treatment at the same time, as I found it very effective!
That’s interesting… perhaps it would be good for people suffering from menopause too?
How I wish these things were shared between BC centres but they don’t seem to be!
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Thank you. At this point I’m not sure I could get her anywhere. She’s very weak and everything “stimulates” her system. Bright lights, TV, (we don’t turn it on), a visit from a friend, and now even eating. I don’t know what to do.
The homeopathic medicine caused a severe “aggravation” (in homeopathy it’s what they call a similar symptom to the condition that it is trying to cure). She can take the lower body bone and joint pain, heat sensation, etc., but the feeling of having to urinate 24/7 also came back, and she had that way back at the beginning of all this for nearly 7 months (as you can imagine, that was excruciating). The Homeopath said this aggravation is a good sign, and we may be on the right track – and if there are more aggravations with the follow-up doses, they should be less severe. But he cannot specify how much less severe… 5%? 95%?
Therefore, she is quite hesitant to continue, since the doctor can’t predict. He’s never used this particular homeopathic med before. So we’ll see what happens next.
I appreciate you all, and your ideas/suggestions.
I’d be at a loss too. At the very least, if eating is problematic and she is still losing weight and/or getting weaker, she should be on special drinks/supplements? And she ought to be being continually monitored by her normal doctor whatever alternative remedies she is trying?
She had a very bad “aggravation” to the homeopathic medicine, and it made sleeping even more difficult, for days now. I think mostly because the homeopath has not tried an anastrozole “antidote,” as he called it, before. It caused a replay of the symptoms she suffered two years ago, and completely disrupted her sleep, which was bad to begin with.
Because she can’t sleep more than 2-4 hours/night, she goes back to bed in the early am to try and rest, and is in bed most of the day – sometimes gets up for a few minutes here and there, but she is so exhausted. The rushing feeling almost never goes away, but sometimes she finds a little peace while lying in bed. She’s not really asleep, just in and out and drifting.
She isn’t up long enough during the daytime to eat enough small meals. Larger meals make her nauseous and stimulates the metabolic/rushing condition. The main thing now is to find a way for her to be able to sleep. Then we can get her eating small meals again.
I’m speaking with her primary care physician this afternoon.
She should at the very least be having supplements - you can get drink shakes packed with nutrients for people unable to eat properly. I would want some temporary, good sleeping pills in order to catch up on some long sleeps and to try to break the body’s habit of constant waking.
Do leisurely baths relax or energize her? (They have opposite effects on my husband and me - I fall asleep - he wakes up!)
You should be referred to other consultants surely? Neurologist?
I really would try a good acupuncturist. I know I’d be loth to carry on with homeopathy when it reproduces horrible symptoms, but he does seem to have his reasons and I don’t know anything much about it!
Looks like you’ll have to fight for attention?
She can eat small amounts at times. Part of it is the time of day. Too close to bedtime and she can’t sleep. A warm bath helps a little at times, but we’ve not found a solution that works consistently. As I think I’ve mentioned, she has a med for sleeping which seems to be losing effectiveness. The docs have tried well over a dozen and only this one has worked.
We’ve seen “specialists” like neurologist who concurred it seems to be a metabolic condition, but not in her realm of care. Problem is, the category of “metabolic” is so broad. No one thinks out of the box. Her system is so sensitive, that even if I could get her to an acupuncturist, I don’t know if she could tolerate it. I’m sorry if I seem negative, but this is an enigma (as her doctors have said), and no one has solved it.
If she could have gotten to a large facility with a team of specialists who could collaborate, etc., maybe that would have helped. But with no formal diagnosis, no proof, getting in would be unlikely. There is an organization in the US, called the UDN (Undiagnosed Disease Network), which I just found out about; it does exactly that – investigates mysterious illnesses. But they have over 7,600 applications and only accept certain cases, and takes months to get an answer to be accepted or not.