Apologies for jumping on this thread - Help required! My fabulous ITN news journalist friend Victoria Grimes is after a post-menapausal breast cancer survivor who was diagnosed in July 2015 or later for a national news report on bisphosphonates. I don't fit the bill as I'm pre-menopausal (albeit in clinical menopause now due to the drugs!) If you do, and they can help out today, please can you give them Vicky's email address email@example.com. Hope everyone is well and thanks in advance
Interesting to see this thread resurrected six months on. Good to re-read different viewpoints.
I am due to have my second DEXA scan this year. Last time I was diagnosed with Osteopenia and have been taking Calcium/Vitamin D3 with my Anastrozole. My worry is that I may now have dropped into the Osteoporosis range. Hoping this isn't the case because I would still be reluctant to take bisphosphonates which have unpleasant s/e's.
From the research regarding bisphosphonates, bisphosphonate treatment does not reduce the risk of new breast cancers developing in the opposite breast. However, they can help to treat some types of cancer that cause bone damage e.g. secondary breast cancer.
For anyone interested here is a link:
"The most common site for breast cancers to spread to is bone. Tumour cells released from the primary breast cancer can remain dormant in the bone for years before spreading to other parts of the body.
Bisphosphonates alter the bone microenvironment, which may make it less favourable for cancer cells and so reduce the risk of cancer recurrence in the bone and in other organs."
Interesting, Sol, that you found a site where people were complaining about side effects of Bisphoshponates as I think I might be suffering - though I'm on Residronate Sodium, not Fosamax.
After 4 years on Letrazole and three years of horrible joint and bone pain and onset of arthritis I'm taking a break from Letrazole. Three weeks so far and only marginal improvement. So I'm wondering if it's the bisphosphonate as well, as I've read about joint pain side effects of those. And I take statins too, so it might be a triple whammy. (I was ok on the bisphosphonates before I got breast cancer diagnosis. Had been taking them for a few years already as bones were deteriorating). By the way, I had bc 20odd years ago too - this latest one was a new cancer, not a recurrence. First time, I had stage 2 and was treated with Zoladex and Tamoxifen for 2 years only. It worked for me - that cancer has not come back in 24 years. So from my personal experience - and I know we're all different - this new 10 year thing with all these nasty side effects seems a bit over the top. I've now got low ferratin count to be looked into. Interesting to see other people having iron deficiency too. So now I think I should stop taking the Calcichew too! Yes, it is difficult to know what to trust and what to do.
I am having investigations into my low Hb/low iron as it is impinging on my life and it maybe due to 'something sinister' but my feeling is that it is due to a) long term use of aspirin (heart) or b) response to treatment for BC as it was low but not as low just prior to recent surgery. I walked up a hill today for a few hundred yards and it nearly finished me off so I am looking forward to an endoscopy and colonoscopy next week.....and three days of yet another 'special' diet to prepare me...at least alcohol is considered a clear fluid as the day prior to tests I can only drink clear fluids for 24 hrs - hic!!!
Soi - really sorry to hear that you had such horrid side effects. I guess they all affect us individually as that is what our bodies are, individual. Clearly there are common themes but severity seems to vary so much. Once I described my SEs to the Onc she just automatically changed to Exemestane which is interestingly much more costly than Arimidex....
Onwards and upwards..
I was on Fosamx for my bones and the side effects were terrible. I had to come off them. I found a site where the drug was being reviewed by patients and the stories were horrendous. I am back just taking Calcium tablets.
I was on Arimidex while taking them. Due to recurrence recently I am now on exemestane and my side effects are terrible. Like IBS symptoms and aching bones .I will give it another couple months and see how I am and if symptoms don't get better I will maybe have to decide to go back to Arimidex. I certainly would never go back on Fosmax. I was tidying up every night before I went to bed just in case I never woke up in the morning lol.
I have been reading your thread with great interest as I was on Anastrazole and switched two weeks ago to Exemestane due to severe side effects on Anastrazole. I have just had a DEXA scan today and a very interesting discussion re the benefits and drawbacks of the two AI's. The info I was given was that the Exemestane WILL cause bone loss whereas Anastrazole MAY. This is due to the difference you pointed out MM in that Ex is a different AI in that it is a steroidal one.....seems that research into the very long term effects is as yet incomplete - well I cant get current info and maybe not searching effectively. It is all so blooming personal in how to make decisions, how treatments fit without lifestyles etc. I just know I was so so ill on Anastrazole, all was fine for first 6 weeks and then wham. However, initially again on Ex I am fine so I am reserving judgement. Thankfully my bone density is 'very good for my age' but the scanning person said that when they see me in two years I WILL have lost density to the point of being at least within the osteopenia range. I was very confused re dietary advice - I am on a low fat diet (heart attack) and iron rich diet (current severe anaemia - invasive investigations next week) both diets work together but seem to conflict with a diet to boost calcium.....seems it is best on AI's to avoid phytoestrogens - all on the list of these make up my main diet. Oh and I could opt to take Calcium and Vit D3 supplements but they interfere with iron absorption so you have to very carefully space their taking 4 hours apart! I am exhausted....pass the wine (not red as it is a phytoestrogen dont you know) !! Katie
Anastrozole and Letrozole were developed first and so have established a proven track record for their value in reducing the risk of recurrence. That is probably why they are prescribed more often. Exemestane is a newer drug. My original treatment plan was to take Tamoxifen for two years followed by Exemestane for three years. But when I had a bad reaction to Tamoxifen, oncologist gave me Anastrozole which surprised me. Half expected to get Exemestane as first planned. I prefer Anastrozole as I do not feel comfortable with the 'irreversible' nature of Exemestane.
Stay strong and do what you feel is right for you.
Understand where you are coming from. When you are first diagnosed you are on a steep learning curve trying to pick up a new language of medical terms, abbreviations, pros and cons of treatments etc....... Plus dealing with the emotional shock.
Anastrozole, Letrozole and Exemestane are in the same family of 'Aromatase Inhibitors' prescribed for post-menopausal ladies. However, Exemestane is different to the other two drugs in that the 'aromatase inhibition mechanism' is irreversible.
My understanding is that the AI's are systemic and work by blocking the action of Aromatase across your whole body. Whereas Tamoxifen blocks oestrogen from binding to and feeding cancer cells in breast tissue only.
Edited to add: After the menopause, oestrogen is no longer made in the ovaries. Instead, it’s made in the fatty tissues of the body. The enzyme aromatase changes other hormones into oestrogen.
I am sick of reading up on it all to be honest! It's far too complex for me to make an informed decision so I wish I could rely on the professionals to be in agreement. Have we not got enough to deal with just going through the process without having to check if we are on the best treatment?! Tiring 😞
Is Anastrazole in the same family as Letrozole do you know? x
I am sorry to read about your dilemma. It makes everything more worrying when even the oncologists cannot agree on the same thing. Tamoxifen may not harm the bones but it comes with other risks; endometrial cancer, stroke and DVT.
It is good that you are carrying out your own research into these drugs.
Sometimes it seems you are caught having to decide between the lesser of two evils. I took Tamoxifen for four months but was switched to Anastrozole because of a severe reaction to it. Then, was prescribed Calceous (Calcium and Vit D3 supplements) to take with Anastrozole. It will be interesting to see if the supplements have halted the deterioration of my bones when I have my next DEXA scan.
Good luck making your choices. It isn't easy.
I have been prescribed them after the dexa scan showed osteoperosis but am afriad to take them! I read a paper on them and it said it stopped the bodies own bone repair and the bone it formed was brittle and not of a good quality(that's me summing it up not how it was written) I dont know what to do now after speaking to one of my onc who advised me to take it as I am young to have osteo (55?) and letrozole really takes it out of the bones. She told me to swap to tamoxofen as it doesn't harm the bones but my other onc who did the op said to stay on it but with suppliments... I am really at a loss as to what to do as they are both not in agreement?!
love Lorna x
Cancer Research UK agrees that biphosphonates can help to treat some types of cancer that cause bone damage. The most common ones include secondary breast cancer, advanced stage prostrate cancer and myeloma.
I can understand why these drugs are not given as standard routine when someone is prescribed Anastrozole for primary BC. Each individual case needs to be assessed. Of course, in cases of secondary BC the necessity is much greater and the drug is unlikely to be refused for a patient.
My baseline DEXA scan, after commencing Anastrozole, revealed I had Osteopenia but despite this I would not want to take Biphosonates because of the s/e's. My GP didn't offer them anyway.
For early stage BC taking even more drugs to prevent a recurrence is not necessarily the catch all solution. I feel my body has enough awful s/e's with Anastrozole alone, the last thing I want is a whole bunch of other s/e's and risks from biphosphonates.
This is the statement from BCC on this subject for your interest:
Commenting on a major breast cancer study into bisphosphonates, led by researchers at Oxford and the University of Sheffield, Samia al Qadhi, Chief Exectuive at Breast Cancer Care, adds:
“This study on bisphosphonates is good news for women with breast cancer. Treatments such as aromatase inhibitors can cause bones to become frail and sometimes fracture. Bisphosphonates can strengthen the bones, which will help women tolerate and complete aromatase inhibitor treatments.
“A key finding from this study is that bisphosphonates can also lower the risk of the breast cancer spreading to the bones - the most common area breast cancer spreads to - as well as reducing the risk of dying from breast cancer in post-menopausal women. We know how terrified people are that their cancer will spread so any drug that can lower this risk is very welcome.
“Bisphosphonates do have side effects as well. They can cause low levels of calcium in the blood and flu like symptoms. They can also irritate the gullet and on rare occasions damage the jaw bone.”
I'm sorry Maggie59 I can't be of any help but I am feeling exactly the same as you and will be watching this thread with great interest. I have been on Tamoxifen for two years and being changed to Anastrazole in September. However I was signed off by the oncologist at my last visit which was before the news about biphosphonates significantly reducing the risk of breast cancer recurrence so didn't get to ask the question.
I am due to get my new prescriptions automatically from my GP whenever I am ready to start taking Anastrazole but I think I will actually make an appointment now so that I can discuss the whole thing with her. I have read some negatives to taking bisphosphonates but if it stops cancer coming back it is probably yet another thing I am more than willing to put up with. It would be good to hear other people's experiences and responses from their doctors on this one.
Recent research has shown that giving biphosphonates alongside Anastrazole significantly reduces the chance of BC reoccurrence or spread. Biphosphonates are given to treat osteoporosis.
having just finished treatment I asked my oncologist this week if she could give me biphosphonates as I am on Anastrazole fot five years. If they don't have side effects then why not?
The answer was no because they are not yet licenced for that specific purpose. She thinks that they will be in a few years. She also suggested that I ask my GP though past experience suggests I will get no joy there.
Two years could be too late. I am prepared to sign a disclaimer and possibly pay for the drugs as I want to minimise future risks.
Has anyone asked the same question and if so what has been the response?