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Bisphosphonates

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Re: Bisphosphonates

I'm glad bisphosphonates are available for people suffering with osteoporosis and bone fractures from cancer. I think it is truly an advance in treatment on what we had available before.

I'm not happy with it being prescibed as a preventive measure for someone who just might get osteoporosis in the future because of the effect of Arimidex when there are dietary changes which can be highly protective and strengthening to the bones and thus osteoporosis may never emerge.

I wish that my mother, who has osteoporosis and advanced arthritis has had a fractured wrist and forearm and has also taken Arimidex for 3 years and is now 90 years old, were not allergic to it. I suggested it to her GP as a possible remedy for her weak bones and he agreed but the very first dose created a strongly adverse set of reactions. She is taking vitamin D on prescription and has stopped the Arimidex. She hasn't had a fractured hip as she has 2 artificial ones - probably the strongest bits of her body!

Bisphosphonates over a period of treatment can improve bone density by 50% in some people, according to research published recently, but possibly not in every case. I'm so glad it's been effective for you, Belinda.

It gives a more positive outlook to anyone else who has already had fractures with a stage IV diagnosis. Thank-you for sharing this information.

Things can improve and life goes on.

Hopefully, Liz, the benefits will kick in soon for you too, as your bones were weakened by a number of factors before and the treatment has to do a bigger job, but over time will be steadily strengthening your bones and certainly preventing some of the continued bone loss you would otherwise be having.

I also wish, as you know from my previous posts, that all the factors that can weaken bones were communicated better, so that we could avoid the avoidable and seek medical support for the unavoidable factors. For instance, Liz, all the time you were taking steroids, were you also prescribed vitamin D to mitigate its effects? Did you have any advice on acid generating foods? My Mum followed the Hay Diet for many years which may have protected her to an extent, though it is not spot on about acid and alkali generating foods and she has now improved on it and she also took cod liver oil for six months a year.

Wishing you well,

Jenny

belinda
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Re: Bisphosphonates

Perhaps I also should have added I have not had any more fractures and lead a normal life, do all the usual things..heavy shopping bags, gardening etc.

belinda
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Re: Bisphosphonates

Hi there, I was diagnosed with stage 4 bc from onset, 2003, when I fractured my hip.
I've been on 2 hormonal drugs, Tamoxifen and Arimidex. I've been taking Arimidex since Spring 2005.
I'm also pre-meno and have a chemically induced menopause.
From the start of my treatment I've had bisphosphonates, at first Aredia (Pamidronate) infusions and now Ibandronate (Bondronat) tablets, one a day.
I also take Adcal D3 calcium supplements.
I'm lucky in that I've had a marvellous response to Arimidex, I feel well and pain free and have had no problems or side effects, with bisphosphonates.
I eat a normal, healthy diet which includes dairy.
Belinda.

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Re: Bisphosphonates

I was dx with IDC Jan 2003, had 2 surgeries, chemo and 25 rads. Some 2 yrs later I got severe pain in my left hip and was worried it could be mets. GP sent me for an ordinary x-ray at local community hospital. He said "nothing wrong" and sent me for physio once a week for 3 months. There was little difference in the pain level, which would keep waking me up at night.

When I next saw my bc surgeon for annual review, I told him about the hip pain and he sent me for a bone scan a few days later. This showed significant osteorarthritis in both hips, hands and feet, but thankfully no mets. Coincidentally, I then had a 3 monthly consult with my gastro for Crohn's, and as I was taking Arimidex, and had a 30 yr history of taking steroids which also thin the bones,he sent me for a DEXA bone density scan. This is quite different to the previous bone scan. The DEXA scan showed significant bone thinning since the previous one done 4 yrs ago, so I was prescribed the bisphosphonate Alendronic Acid, one tablet once a week,along with Calcichew/VitD3, twice daily. My hip pain has reduced to the point where I can sleep normally, and it only hurts when I am on my feet a lot.

I have recently broken a metatarsal bone in my left foot, just by standing up from a chair, which left me in a wheelchair and on crutches for a month. 3 weeks ago I broke a small bone in my right foot, having knocked it on the door of the fridge and am grateful I didn't break a hip when I fell on standing.
I somehow don't think my various doctors would be prescribing expensive drugs for me if they thought I didn't need them. I have had no side effects whatsoever from the Alendronic Acid, or for that matter Arimidex. The only problem with the Alendronic Acid is that you have to take it on rising, with a glass of water (no tea,coffee or orange juice) and not lie down for 30 minutes - don't know why so I have to force myself to take it. My GP said I am having every medication he can prescribe and I have to accept that he knows more about meds than I do. As the bc surgeon and gastro concur I am at ease taking them.

Liz.

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Re: Bisphosphonates

Hello again,

As a relative newcomer to the site I was not aware that I was re-opening a subject that has been hotly debated previously. I greatly appreciate the responses that I have received and look forward to making my own mind up once I have recovered from the unexpected irradiation on my lower spine, following so closely on my cervical irradiation.

I am finding great comfort from all you ladies being slightly ahead of me and helping to hold my hand. This is a horrible place to be in but I know I am not alone.

Thoughts for you all, Ruftikins

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Re: Bisphosphonates

Hi, Jane. No you don't have to rely on my word or either of the authors you mention. Of course in a brief posting here I cannot give a complete picture, nor cite all the peer reviewed scientific research articles, but I've included a few below.

Body acid-base balance is well described, tissue by tissue in any good medical physiology text book. Meanwhile

Have you looked at the link on my last post? It is to page 5 of a longer report. If you check it out I think that there are refs. to the relevant sources of information from reputable researchers at reputable universities in the USA.

Apart from that, also check out
Frassetto, L.A., Todd, K.M., Morris, R.C. Jr and Sebastian, A., 2000. "Worldwide incidence of hip fracture in elderly women: relation to consumption of animal and vegetable foods". Journal of Gerontology: Medical Sciences, 55A, 10, M585-M592.
Remer, T. and Manz, F. 1995 "Potential renal acid load of foods and its influence on urine pH" Journal of American Dietetic Association, 95, 791-797;
Remer, T. and Manz, F, 1994 "Estimation of the renal net acid excretion by adults consuming diets containing variable aount of protein" Amer. J. Clin. Nutr., 59, 1356-1361;
Lemann, J. Jr, Litzow, J.R. and Lennon, E.J., 1966. "The effects of chronic acid loads in normal man: further evidence for the participation of bone mineral in the defense against chronic metabolic acidosis". Journal of clinican Investigation, 45, 1608-1614;
Green, J. and Kleeman, C.R., 1991. "The role of bone in regulation of systemic acid-base balance". Kidney International, 39, 9-26;
Wachman, A. and Bernstein, D.S., 1968. "Diet and Osteoporosis". The Lancet, 1, 958-959; Barzel, U.S. and Massey, L.K., 1998. "Excess dietary protein can adversely affect bone." Journal of Nutrition, 128, 1051-1053.
R.D.Kradjian, Chief of breast surgery division at the Seton Medical Centre, Daly California 1994 "Save yourself from breast cancer" New York, Berkley Books; and http://www.afpafitness.com/milkdoc.htm;
Outwater, J.L, Nicholson, A, and Barnard, N., 1997. Dairy products and breast cancer; the IGF, estrogen and BGH hypothesis. Medical Hypotheses, 48, 453-461;
The European Commission, "Health and Consumer Protection. Scientific Committee on Veterinary Measures Relating to Public Health - Outcome of Discussions, 1999. Report on Public Health Aspects of the Use of Bovine Somatotropin;
American Journal of Clinical Nutrition quoted in Sunday Times Magazine, July 21 2002, "Milk:Nectar or Poison?"...

I find it amazing that much of this science has been in the public domain since as long ago as the 1960's. One of these articles was in the first annual edition of The Lancet in 1968, I think. Information has been available since the 1920's about the effect of diet on the pH of urine. Urine is a waste product. The body uses the kidneys to balance the acid-alkali books of all our vital tissues, which in themselves have very small margins of tolerance to function at all, from bone to brain to heart, to blood and other tissues. The calcium and magnesium and phosphorus stores are used by the kidneys to buffer the acid introduced in our food or generated by metabolic acidosis. The excess calcium has to be discharged from the body otherwise it build up in the blood. High calcium levels in the blood ultimately lead to death. As renal deterioration progresses that is exactly what happens in advanced stages of breast cancer and blood calcium has to be controlled with drug therapies.

It's the protein in milk which gives an acid yield in the body. ALL Animal protein creates an acid yield resulting in net calcium loss in the urine. Excess Sodium (in salt) also results in net calcium loss in the urine. This all contributes to bone mining and is therefore best limited in healthy people and totally avoided in people with cancer.

There are many more refs. I could give you if you would like them but I am travelling for the next 3-4 weeks so it may be difficult to access the sources. But let me know and I shall give you the refs. I rely on on any specific topic, gladly.

Wishing you well,

Jenny

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Re: Bisphosphonates

Hi Jenny

Your knowledge of alkaline and acid levels in the blood sounds impressive but I wonder what scientific basis you have for your assertions? Could you provide some evidence...NOT from alternative health websites but from peer reviewed reserach.

I understand that many people want to believe that through diet they can affect the course of their cancer disease progression, but I'm sorry I think this is mainly wishful thinking...though I acknowledge that feeling good about one's diet helps you to feel good about yourself and that helps living with cancer.

I agree with Holeybones on Jane Plant and Gilliam McKeith...very dubious both of them.

Jane

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Re: Bisphosphonates

Hi, Ruftikins and Holeybones.
There are many things your body needs but only in exactly the right amounts. There are other things that your body can cope with if you take in too much - it just excretes it - like vitamin C for instance that your body doesn't store and doesn't affect the way your body works if you take in more than you need.

Skip the bits you already know here but Calcium is one of the things you need to get just right. It is very alkali. Alkali is the opposite chemically to Acid. Alkalinity and acidity are measure on a scale called pH which goes from 0 to 14. Low numbers are very acid. High numbers are very alkaline. Acids are corrosive and dissolve alkalis. Extreme Alkalis are extreme irritants, such as strong bleach. Mixed together acids and alkalis neutralise eachother. Neutral on the pH scale has a value of 7.

Healthy blood is slightly alkali. Bones are very rich in alkaline minerals, such as Calcium and Magnesium and Phosphorus and for strength need to remain alkaline.
If you take in a very alkaline food, it produces acid in your body in an attempt to neutralise it and bring your blood to the correct and slightly alkaline state. It is "acid yielding". Cancer thrives in acid conditions and dies in alkaline ones. Bone health depends on blood and other tissues remaining neutral to slightly alkaline. When your body is awash with acid, trying to neutralise the excess calcium found in milk and other dairy products, it acts to bring things back to normal. So a destabilising cycle is set up. Bone plays a part in this by giving up some of its calcium and magnesium to neutralise the acid the body produces to cope with the alkaline food. So you enjoy dairy products in the beleif it is strengthening your bones. Your body goes into overtime production of acid to neutralise the excess calcium it contains and your bones are weakened by releasing calcium to neutralise the acid. Ergo... countries which consume the most dairy products suffer the most from osteoporosis! In your own case, you can try this out. The pH of your body is reflected in the pH of your urine. You can find charts which will tell you which foods produce acid or alkali urine - known as the renal acid load. You can get pH indicator papers and test your own urine - the first of the day, and you will find that on mornings after a cheesy or other high dairy day before, your urine will be more acid than on a day when you had none. You'll also find that grains acidify your body unless you eat them with potassium rich and alkali yielding fruit and veg., dried fruits, herbs and spices. Porridge with milk: bad, Muesli with lots of dried and fresh fruit: good! So if you like porridge for breakfast, use soya milk and also drink a fresh juice or have a dish of fruit salad- each with a squeeze of fresh lemon. Amazingly lemon juice yields alkali in the body because it releases bicarbonate! The target pH of urine for bone health and stability is 6.8 to 7.5 What was the pH of your last urine test? Some people's are as low as 5. This acid state is bad for bones and good for cancer. A very useful report is found at http://www.newstarget.com/Report_acid_alkaline_pH_5.html

Sorry for the long post! Please pick me up on what I've failed to explain.

Wishing you well,

Jenny

BTW, thanks Holeybones for your remarks on Vitamin D. I agree and would no take more than the recommended 2 teaspoonfuls of cod liver oil daily( approved dose on the bottle label). I think that high levels of vitamin D may be incorporated in some way into conventional cancer treatments in the future when a delivery mechanism has been worked out which goes straight to the tumour cells. Meanwhile excess in the liver is definitely dodgy.

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Re: Bisphosphonates

Jane Plant is a geologist with no formal qualifications to back up anything she has to say regarding nutrition. There have been several heated discussions about Jane Plant in the past and you may find some of it in the archives.

Gillian McKeith ("You are what you eat") was recently recently advised by the Office of Fair trading to stop using the title "Doctor" because it was a bogus doctorate in nutrition bought from a bogus US college. She complied to stop further action by the OFT. This is all in the public domain and a google search will bring up any further details you require about this.

Of course building healthy bones means you need food rich in calcium and vitamin D. it is incredibly hard to get enough calcium if you exclude dairy products from your diet, so I'd be reluctant to try it based on dubious advice from Jane Plant or Gillian McKeith. A lot of non-dairy milk substitutes (e.g. soya milk) are rich in phytoestrogen and there are concerns that these might be dangerous to those who are ER+. Others suggest that weak phytoestrogens fight with stronger oestrogens produced by your body for position on the ER receptors so are a good thing, but no conclusive tests so who knows?

Get some advice from a real nutritionist at your hospital if you need someone to talk to regarding good sources of calcium. I'm sure Oncology will give you a referral if you are worried.

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Re: Bisphosphonates

Hi Jennyw,

Very interested in your comments about bisphonates and dairy products. I was under the impression that calcium , cheese etc would build my bones up but you seem to be saying the opposite.

I have spine mets, and a bone scan and MRI this week showed problems in my hips and lumbar vertebrae so ONC has put me on Bondronat. I am also on Arimidex. If I do not eat lots of calcium then how can my bones regenerate? I think I have probably not understood your reasoning...can you run it by me again.

Thanks Ruftikins

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Re: Bisphosphonates

Hi, Barbara. I don't know about the Bismark trial.
The trial I know about is at the Royal Marsden in Surrey. The doc's name is Mary O'Brien. It is in Prof. Ian Smith's department, I think. I'll send you her sec's email privately.

Wishing you well,

Jenny

Enjoy your soy!

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Re: Bisphosphonates

Hi Jenny

thanks for the info. Prior to the dx of secondaries I changed to soya milk but stopped taking it when i read that it contained estrogen.thought it might encourage the cancer to grow, maybe I should go back to it. How can I get hold of the info on the bisphonate trials? am seeing the onc on thursday for a checkup.I always like to go with a list of questions for him, I don't think he approves of me spending time gathering info from the internet but hey ho, so I have to be careful what I feed back to him. I was in shock when I discovered that I had mets and so I accepted, without question, the treatment offered and to be honest i was relieved that I didn't need chemo and because I don't have any problems as yet, I will continue. Actually I doubt he will change anything until the Arimidex stops working. I did mention to him at the last visit about the Bismark trial which is comparing IV bisphonates with tablets but I'm not eligible as I had already been taking the tablets for 6 months.

look forward to hearing from you

barbara x

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Re: Bisphosphonates

Hi, Sarah and Barbara.
Bisphosphonates are very strong medecine which has very strong side effects in some people either short or longer term, so although I've had RT for bone mets in my spine and hip, I'm not pressing to take them. I am trying to maintain my bone health through exercise and a diet which favours an alkali body state. This excludes excessive calcium, such as found in dairy products, as eating high calcium dairy products or taking supplements provokes the body to release acids to neutralise the alkali and this attacks the bones.... vicious circle.

You'll find appropriate dietary advice in Jane Plant's books, Your Life in Your Hands, (new edition just out) and Osteoporosis, understand, prevent and overcome! which also explains the science, and also in other writers, such as Gillian Keigh.

I haven't ruled out taking bisphosphonates and am reading everything I can about them in the technical literature but I also am having dental treatment and need to be a year out of that before I could consider it. (Can have dramatic effects on the jaw bone if dental treatment is recent. Take advice on this - if I were taking bisphosphonates I think I'd suspend treatment till my dental work was finished and my jaw had had a few months to fully recover.) My mum was prescribed them for osteoporosis and had immediate horrendous side-effects and maybe is allergic. Hoping if I need them that this doesn't run in the family. She has also had breast cancer.

I certainly wouldn't take them just to balance Arimidex. They are being heavily promoted for this right now and the drug companies are making massive fortunes.

Try exercise and diet and keep an eye on your blood and urine pH which should be around 6.8-7.2 and have bone density tested maybe as a base line. Watch your height - often the first sign of osteoporosis is loss of height. Measure your height every 6 months. If you are losing height, have a second bone density test. (You can get pH test papers and do the urine test at home - I do this every week. Look at your last blood and urine results and see if you need to reduce your acidity. Acidity favours cancer which finds it very difficult to grow in an alkali or neutral environment.)

Hip fracture and dairy consumption are closely correlated. Non-dairy consuming populations not only suffer less from breast cancer but also less from osteoporosis. The highest dairy consumers have the highest death rate from results of hip fractures and bone loss. (Its one of the top 5 causes of women's deaths in most advanced countries) So try finding a substitute if you are still consuming dairy products.

The Royal Marsden are starting an interesting comparative trial on bisphosphonates, Barbara, for people with bone mets. It may be of use to you. Again, because of my dental treatment, I'm not considering it, but I know they are recruiting at the moment. I was given this information by Dr. Mary O'Brien, a consultant oncologist there, who recently supplied a second opinion for me.
Sorry for the long post!
Hope this helps

Wishing you well,

Jenny

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Re: Bisphosphonates

Hi Sarah

It great to hear that you don't have bone mets. unfortunately after a remission of 13 years i now have bone mets. I took tamoxifen for 6 years and now that I am post menopausal the oncologist has prescribed Arimidex and also a bisphonate tablet called Bonefos. this is because the Arimdex lowers the levels of female hormones which may cause the bones to lose their density and the bisphonate tablets help prevent this. I suggest you speak to your GP again. He may be reluctant to prescribe them due to the cost to his practice. The pharmacist told me that each tablet costs £10.and I take two a day.
I also read an article some time ago which stated that this drug has been found to stop the spread of breast cancer to the bones by more than 50%. and the study suggested that it should be used as a first line therapy for women just diagnosed but of course it isn't

good luck with your GP

barbara

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Re: Bisphosphonates

Have you had a bone density scan? I started to have them regularly when changed to arimidex, but as my bone density was fine i did not need to take it.

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Bisphosphonates

I do not have bone mets (as far as I know) & hope you don't mind my posting here.
My GP has written to me suggesting that, as a pre-menopausal woman (pre chemo) now taking Arimidex and Calcium plus vit D, current research suggests I should also be taking a bisphosphonate to protect against osteoporosis.
I understand this drug can be taken daily or weekly, can any one offer any advice as to the benefits/ negatives either way. Thank you (I have also posted this in the "undergoing treatment forum")
Sarah