Hi I’ve been due to start Zometa for the past couple of weeks but my adjusted calcium remains stubbornly low and dropped further this week. It’s causing me stress as I can feel how weak my skeleton is - sounds strange to anyone who hasn’t been there, but when you know you know! I don’t understand how this could happen I eat very healthily- yogurt, granola fresh fruit , cheese, pulses, fish, leafy greens nuts seeds etc every day. Also taking the AdCal tablets, 2 a day.
My team suggested taking 4 a day, 2 and 2 but I’ve read that your body can only absorb 500mg over a 2 hour period, so my new plan is to spread them out and take them with orange juice to help absorption. I’m hopeful that I’ll then get the benefits of the tablets and my healthy diet.
Does anyone have any further suggestions, pretty please?- I’m so concerned about the risk of fractures as I’ve got sizeable and multiple lesions all through my pelvis, ribs and spine and I had radiotherapy over Christmas which I know can increase the risk further. I’m really keen to get this treatment underway and from what I understand there are no alternatives .
Thanks in advance xx.
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Hi @Spangleystar, sorry you’re dealing with this frustration and worry.
We have information about managing the effects of myeloma including bone health here: Managing the effects of myeloma.
I’m sure you know this but the most important thing is to keep talking to your haematology team about what’s happening andany research you might have found. They’re the ones who can work out the best approach for you specifically, whether that’s adjusting the dose or timing of your supplements or looking at other factors that might be affecting your absorption. Please do tell them about any plan you’re thinking of trying before you change anything - they’ll want to know what you’re doing and can advise you properly.
Our nurses on the Support Services team is also there if you need someone to talk through the stress and worry whilst you’re waiting, or if you’d like to chat to them about bone health from a more clinical perspective. You can call them on 0808 2080 888 or email support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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Thanks @Ceri_BloodCancerUK good advice, I’m in hospital later so I will speak to the nurses on the unit - my trial nurse wasn’t really knowledgeable on this and gave me the experimental vibe, with a maybe take 4 a day? So I figured it was fair game to try something different.
I’ll look at the resources you’ve shared - thanks again.
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Hello @Spangleystar
I wondered if this booklet may be helpful to you: MyelomaUK/Bone-Disease/treatment from our colleagues at Myeloma UK. You could skip to page 13 (it’s a 40 page booklet) as that seems the most relevant chapter for some of your questions. If you wish, you can also request a printed copy from them.
I would suggest speaking to the Hospital Pharmacy about the Ad-Cal dosing if you are unsure. You could call them through the Hospital switchboard or go along to them when you are there, later today. They would be pleased to advise and are also best placed, to inform you around medication doses and absorption.
Do let us know how you get on today. Best wishes, Heidi.
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Thank you Heidi, thank you, I’ll take a good look and email my pharmacy contact too! Much appreciated xx
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Hi @Ceri_BloodCancerUK and @Heidi_BloodCancerUK
Thanks so much for your advice yesterday. Really helped me allay my concerns.
My team confirmed with Pharmacy (before I even got chance to 
) it would be ok either to split the AdCal into 4 spread out doses or do 2 &2. I’m hopeful that splitting them gives more ‘bang for the buck’ so to speak as I started the zometa yesterday (the consultant over ruled the threshold) which was a little strange as that hadn’t happened the week before when it was higher. It’s such a balancing act though, so I’m going with it - and hopefully my calcium now with the extra supplements won’t drop too far.
So far no side effects from the zometa - I was dreading a resurgence of bone pain but if it’s not here yet, I’m hoping it’s not coming. The nurse said first round is the one most likely to bring any side effects and any you get will get easier the next time, so feeling positive.
Thanks again xx
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