Which Bone Maintenance Supplements?

Hi Dedalus I am on the bisphosphonates IV six monthly. My onc only prescribed Vit D and Calcium for one month after infusion. I was very low on Vit D before being diagnosed with BC. The leaflet I got from the hospital along with the Bisphosphonates information does recommend Vit D supplementation ongoing at 800 to 1000iu per day. I am vegan and was also concerned that I may not be getting enough calcium so my GP prescribed me Accrete which is a total of 1200mg of calcium per day and 800 iu of Vit D. I think this is based on the fact that I may not be getting much calcium from food as I don't eat dairy. Sometimes, if I drink lots of fortified milk alternatives in one day then I only take half the calcium allocation for that day. Nothing has been mentioned about Vit K2 or magnesium but am about to research a multivitamin to cover all my bases and which can go alongside the Accrete, as I also need to ensure I am getting enough B12 due to being Vegan. I find it all quite confusing as just want to make sure I am not deficient in anything but not go overboard on supplementation or take anything to jeopardise the letrozole treatment. I have found this is an area where I have struggled to get any advice from the BC doctors or nurses. My BCN said that any questions on Vits should be directed to my GP rather than to them..(I did try asking on a number of occasions - they are probably tired of me now!)  Had your wife been taking Vit D prior to the blood test?

Hi PictureThis2

I am no expert on vitamins hence my thread to determine what others with BC are doing.  I would say at this point that my wife will not take bisphosphonates due to the general side effects, and more specifically she is concerned to protect her eyes.

You ask if my wife was taking Vit D before her diagnosis.  My wife and I stopped taking Vit D and indeed all supplements after I received a cancer diagnosis over 3 years. ago  This was due to the fact that we had both been taking high dose Vit D3 as per the Vitamin D Council's general health and anti-cancer strategy.  We had a very healthy lifestyle in virtually all aspects, then I subsequently got cancer.  This then led to me doubting the wisdom of taking vitamins.  We were only taking the 2 safest ones ie high dose quality VitC and D.  I had this idea that perhaps vitamins supported the cancer cells to proliferate.  They are misaligned body cells after all!  

We decided to resort to obtaining our vitamins from our diet and I try to spend a little more time in the sun, when we see it here in Scotland!! Just 20 minutes exposure in a day at peak time can provide a whopping 10,000 iu in one go.  Unfortunately due to her really fair skin, my wife can't do this.  She does not tan and burns really quickly which means she has to wear a high factor sunscreen which defeats the purpose.  Vitamin D is given very little opportunity to develop on her skin.

Up until her BC diagnosis my wife was on oestrogen only therapy due to having had a surgical menopause.  She stopped the ERT so now her bone health is at risk.  We considered the matter and she decided to resume vitamin D3 and mineral supplementation in the dosage mentioned.

Over the years we have paid to monitor our Vit D levels through Birmingham Hospital.  Before ceasing Vit D supplementation over 3 years ago our levels were always in the optimum range.  Our Vit D3 + D2 assay this week showed my level to be just adequate and my wife's as 'insufficient'.  I know that there is nothing as good as oestrogen for women's bones, but we have to try to slow down bone loss over time.  As you will know a hip fracture can be very detrimental and even life-threatening.

It can be extremely difficult to get  Vit D3 + D2  into the optimum levels as recommended by the Vitamiin D Society, even with a high dosage, but my wife found that there was some sort of synergistic benefit of taking a quality Magnesium Citrate powder with the Vit D.  When she was taking high dose ie 5,000 iu Vit D in conjunction with Mag citrate 3 years ago, Birmingham Hospital got in touch following an assay and told her to reduce her Vit D dosage.

Given both our C diagnosis we don't know if she should now be aiming for a blood level of 100 to 150 nmol/l as recommended by the Vitamin D Society.  My level is currently at 51 nmol/l and is classified as 'adequate' by Birmingham Hospital.  I think for the moment we are both content to sit at adequate.

As I said, I am no expert, but I have read that it is necessary to take Vitami K2 with Vit D particularly when also supplementing with calcium.  We believe you have to be careful with calcium as you don't want it to be deposited in your arteries.  As I understand it, the K2 in conjunction with Vitamin D3 & D2 to utilise the calcium more effectively and prevent excess deposition in your arteries.  It is important to calculate your calcium intake from all sources.

Magnesium citrate also appears to have a beneficial effect with regard to bone building and for general aches and pains etc.

Despite the fact that we think of vitamins in a positive light you still have to be careful and intelligent as to how you consume them., particularly the ones that are deposited in your body fat and liver. Watch out for Vit A in multivits you can quite easily and quickly overdose on them.  Vit A is generally available in our diet. As you allude to, you also have to be careful of interaction with your drug regime.  I believe that it is also very important to balance your intake through your diet and supplementation.

I can't comment on a vegan diet because this is something I have never considered or analysed.

I agree that it is difficult to get advice from medical professionals on this issue.  The usual response is "just have a healthy diet".  However, in most respects, I agree with this.  IMO sunlight and a varied and healthy diet trumps supplementation, but sometimes it is necessary as in the case of women taking ET.

D

Hi ya, I’m on the 6 monthly IV zometa, had my second in June, with 4 to go.  I’ve never had my vit d levels checked, nor any bloods of any kind since my last chemo in Oct last year. I’ve not been told to take any supplements by my onc tho my consultant did say to take vit d 4000 daily as it would help with joint pain side effects of the anastrozole and exemestane, since I’m not taking either ( my own choice) I’m not taking the vit d either!

I am fair skinned with dark hair, now grey, but didn’t tan easily, I don’t go in the sun much as I had melanoma in 2013. 

I’m not taking anything at all apart from the odd painkiller if I need to. 

Hi ruthie2

Snap!  My wife was also diagnosed with melanoma 16 years ago.  Fortunately, it was diagnosed early and as being in-situ.  It was a  young female French/Algerian doctor, who was being cautious and thorough.  It was in France, and she was examining my wife for a sun-induced skin problem on her arm but decided to check my wife all over because of her fair skin.  I don't believe that would have happened in the UK, and I talk from subsequent experience. 

Generally, I believe you have to tread a fine line over sun exposure particularly if you are fair.  My wife has never sunbathed, but she does recall being repeatedly burned when she was an infant.  Our skins have a memory and burning as a child can come back to haunt us.

I have read around the issue and am convinced that sun exposure is really beneficial for general health and cancer prevention.  Fair-skinned people can respond to sun exposure and generate Vit D very quickly and significantly much more efficiently than darker-skinned people, but unfortunately are more prone to premature ageing and skin cancer.  They somehow have to strike a good balance of shorter exposure times. 

There is a  documented correlation between higher incidences of cancer in northern latitudes because of reduced exposure to quality sunshine.  Some Governments have recommended supplementing breads etc with Vit D because of this.  All M&S bread and related products have added Vit D.  The Scottish Govt wrote to GPs a few years ago and advised them to supplement in the autumn and winter months, but I think this direction fell by the wayside.

If you Google Birmingham Hospital Vit D blood test you can find the offer of a test for £29.  Well worth it in my opinion because you need to know and monitor your level before taking a supplement, otherwise you are in the dark.  IMHO Vit D3 in particular, and hopefully obtained from sunshine, is most beneficial to help fight cancer

I trust it is ok to post this link:  https://www.vitamindtest.org.uk/

D

Mine was also in situ but was taken off by my gp in the surgery at my insistence, the gp said he was 99.9% sure it was nothing and he’d only been wrong 6 times in 27 yrs, hmmmm........

i ended up having to have another wle as he didn’t get clear margins either. I did find I got way more support then as I went through the nhs, it didn’t occur to me to use our health insurance.

I remember burning a lot as a child too, many years ago a gp recommended I use a sun bed for my psoriasis, so it was probably a combination of the 2.

thanks for the link, it’s very much appreciated, i’ll Be heading on over 

Hi Dedalus and ruthie2Thanks for your detailed reply, its very helpful and also alerted me to the fact that K1 and K2 are different vitamins and that my diet contains no K2 as apparently it only comes from animal sources, so I need to look into a supplement I think. The vitamin amounts your wife is now taking sound very good to me and not too high. Was that recommended by Birmingham hospital or is from your own research?  I was wondering about trying to change from calcium carbonate (which is in the Accrete) to calcium citrate actually. I have been getting awful indigestion. My GP assumes it is from the Letrozole but it has just dawned on me that it could be from the Accrete as it does seem a lot worse after I take it! Another thing to look into I think. I know what you mean about the calcium, I am also very wary of taking too much, even though I don't eat dairy, and frequently only take half my prescribed dosage. I think I will call my GP to discuss. thanks also for the link to the Birmingham hospital blood test for D3. I may ask my GP first and if no luck there, then I will certainly head over to that link.

I am sorry to hear about both your cancer diagnoses and can understand that you would possibly consider your vitamin intake as a factor. It may of course not be linked at all. In my case I had the opposite scenario ie I was not supplementing at all and was found to be really low on vitamin D just before diagnosis. I also mentally linked that to my diagnosis, rightly or wrongly. I think to be at an adequate level, or just above adequate, in any vitamin, is probably ideal. I do think lack of sunshine is a major factor in my vitamin d deficiency since like your wife I am also fair. There is also a history of skin cancer in my immediate family so traditionally I cover up in the sun and probably don't get much vitamin d naturally. I am being a bit bolder now and allowing myself 15 minutes as I realise what the benefits are!

By the way, if you find any good makes of bone supplements which are not full of lots of additives and gunk, I would be really interested to know. It is hard to find one which also fits the required amounts and is not in too high a dose.

Best wishes to you both.

Thanks for your best wishes PictureThis2.  The same to you.

I am not advising a particular vitamin strategy for anyone as we are all unique and have to match requirements to our personal circumstances.  It is difficult, but it is important you discuss matters with the medics if you can.  Personally I have not found this to be very satisfactory.  I even asked to be referred to an NHS dietician and found the outcome to be quite superficial.

I revised my previous attitude to supplements due to my C diagnosis.  My current viewpoint is that where possible we should try and modify our diet to ensure satisfaction in the vitamin and mineral staples.  Only when this is absolutely not possible would I look to supplements.  As I indicated I look to sunshine for my vitamin D.  At the moment I take no supplements, but they are necessary for my wife's situation.  She stopped taking a Vit D3 supplement when I did 3 years ago, and now she is deficient.

It is also important to either get medical advice or thoroughly research any possible negative interaction with your drug regime.

Re Vit K2.  I understand it is derived from lanolin an oil extracted from wool in sheep.  There is a vegetarian version derived from mushrooms I believe.

We have not as yet decided on the final dosage for the supplements, which is why I posted the thread to determine what others are doing.  The doses we have currently arrived at are what we have found to be most frequently mentioned with regard to my wife's age and situation.  The Vitamin D Society recommend considerably higher doses of Vit D3 to achieve optimum blood levels.

With regard to bone supplements, one thing I have yet to look at is whether calcium supplementation is in fact beneficial.  There are studies that say otherwise.  To avoid caking agents and other additives we have always tried to avoid pill forms wherever possible.  The tablets can also be quite large to swallow.  Instead, we opt for powders without any additives.  This is available for calcium citrate, magnesium citrate and vit c if required.  The powders are easier to take and to tweak the dose if you are experiencing a reaction.  For example, you mentioned the digestive problems you are having.  Even with the calcium citrate powder, my wife is experiencing the same issue so we are presently trying to tweak it by splitting it into 2 smaller doses.

Calcium is a difficult one because it could be easily satisfied by diet, but then you are increasing your fat intake which BC survivors and others are advised to be careful not to overindulge.

I hesitate to mention the brand but we find the 'Now' brand from a reputable supplier seems to be acceptable in quality and price.   They also supply Vitamin D3 with K2 (lanolin derived) combined, in veg capsules.  However, if anyone has found suitable powders we would like to hear about them.

I hope I have covered all your questions.

D

My doctor was against giving me calcium supplements as well,  with the reasoning that it could cause problems taking too much through diet and supplements  I'm Scottish (fair,  thin skin which struggles to tan but rarely burns) but live in London with lots of sunshine.  I also try to  up my levels with some Spanish or Florida sun most years. 

I was told that my vitamin D level was'lower than most' a few years ago so have been given a supplement of 1000iu daily to take daily for the rest of my life since my diagnosis. 

I've just started on exemestane,  and it's very different in effect from  the letrozole. It gives me chest pain,  burning legs and a great thirst. To early to say about thr bone pain. 

Hi Londonmumof2

Hello to a fellow Scot.  You know the skin type we have evolved to have in northern latitudes. lol

We follow your ET journey with interest and my wife is very empathetic to your situation.

As I have indicated I am a firm believer in sunshine for Vit D where possible.  I am sure this is why the Royals manage to take themselves off on some Commonwealth visit to the Antipodes etc in the winter months, which obviously contributes to their longevity.  They know the benefits.

D

@Dedalus Thank you for all the information, really useful. I agree its best to get all we can from our diets and only use the supplements if really needed. I wish your wife all the best with her new vitamin regime. If only we all had the means and the money to jet off for some much needed winter sun... our need for D3 is the perfect excuse!