[PerkymiteParticipant]

Hi, since diagnoses, Jul 2009, I have been on Loron 520, Disodium Clodronate, as my Bone strengthening Tablet. I take two tablets (1040 mg) every night, but it must be at least 2 hours after food or milky drink, so no Horlicks to go to bed with!

I cannot help but notice that just about everybody else is on Zometa. I just wonder why!

Anybody else on Loron?

Kindest Regards ? Vasbyte

David

[DaiCroParticipant]

Hi David,

I am on 'Bonefos' – a Sodium Clodronate, of which I take 600mg (300mg twice a day).

I had 1x bag of Zometa at the beginning of my cancer journey, when they were treating me for secondary bone cancer, primary unknown. My mate, the ill-famed Welsh consultant, stopped me continuing with Zometa because he was convinced that I would end up with 'osteochronosis of the jaw'.

I take my general meds at 8am & 8pm, excepting the morning bonefos, which I take at 10am because I enjoy cereal with milk for my breakfast.

I have extensive bone damage but the medication has never come up for debate. I do believe however that Zometa is given to people with active bone problems… although I am quite willing to have that belief blown out of the water. 🙂

Dai.

[MariParticipant]

Dear David,

I am sure I remember reading something somwhere that Zometa has been shown to have an active effect in preventing relapse. I cant rememeber exactly what I am afraid. I know Eve is pretty clued up, maybe she will know. Steve mentioned this to his consultant and he, Prof Schey at Kings agreed and swapped Steve from Pamidronate to Zometa which he now has monthly. However he has to take some kind of chalk tablets daily, not sure of the name, and have his blood tested for calcium each month before his infusion. He is not allowed the zometa if his calcium levels are too low as the zometa lowers the Ca still further. I think the idea is to continue the zometa for 12 months. I hope this has helped despite all my uncertainty.
I am delighted to hear you are doing so well and the pp levels are behaving,
love Mari x

[HelenParticipant]

Hi David
There is some evidence to suggest that Zometa has an anti cancer effect ( recent oncology weekly) and all myeloma patients should go on it, the jury is still out as to how long you should be on it.
There is also a question as to should you be on it if you are in remission, as technically if you are in remission there should be no active bone marrow disease. I'm just being given it and accepting that if it helps I'll do anything. I have to have the chalk( calcium) tabs too as my calcium is often low.
Helen

[eveParticipant]

Hi Everybody
Zometa is known to be very effective on bone damage,usually administered once a month to strengthen bone with Adcal-D3 once a day.This has worked wonders on Slim,who could not even lift a carry bag with one item in.
Now he is on Velcade he has Zometa every three weeks,but Myeloma is 80% in marrow,
I can only say doing research on it,it does seem very effective and quick to build on any damage done MRI scan does not show massive improvement,but no more damage considering MM gone up to 80% in bones.
We are in limbo at the moment as will have to wait for bone marrow results,to find out were we stand,getting to the stage do we want to know!:-P
Slim is as well as can be,enjoying life as best we can.Love Eve

[TinaParticipant]

Hi David,

As we know both drugs are used in the main to treat high levels of calcium in the blood where the calcium leaches out of the bones. (hypercalcaemia)

Two thoughts on why you are having one and not the other:

Sodium Clodronate or brand names – Loron & Bonefos are thought to be less harmful to the kidneys than Zometa.

Zometa is more expensive.

Tina X

[PerkymiteParticipant]

Thanks everybody.

There is some resonance in what you say Dai in that I only had the neck tumour. When they did my skeletal survey they could not find any other bone lesions.

I will have to ask at my next consultation ? drat I am going to have to wait 3 months now! 😀 😀

Had to stop my daily walk I have picked up the chest infection that has been doing the rounds in Taunton, temperature went up slightly last night but down again now, the old soluble paracetamol works wonders.

Kindest regards ? vasbyte

David

Edit
'osteochronosis of the jaw' is a danger with all of these treatments I understand. When I first started Loron there was a big huha about the lenght of time you could be on it, 2 years was quoted. That does not seem to be a concern nowadays.

Hi Tina
Well we mere humans will never really know about what we are NOT prescribed because it is too expensive i suspect. But I am happpy to be on Loron, Zometa seem a lot more fuss, that is as long as it is working :-S

[DebsParticipant]

Hi Dai,
I was on zometa but have never (touch wood) experienced bone damage to date. I'm off it at the moment as I'm still only 2 months post transplant, but I expect to be put back onto it in the next couple of weeks.
Sorry if that blows your theory out of the water!!
I am with Gareth Morgan so he may be biased….I think he was responsible for the trial that recommended zometa above other drugs.
Take care
Debs x

[GillParticipant]

I too believe that treatment is cost led to a point. Our health insurance would only fund Stephen on 3 lots of Zometa this time round as they had already paid for Velcade during the past year. Gill xxx

[mhnevillParticipant]

Hi david

You raise an interesting question. In another post I point out that I have just been moved from Bonefos to Zometa this month – first infusion this Tuesday (and had shivering and a temperature yesterday! but gather that can happen in the first month).

I had read that it was now NICE's recommendation as first line treatment because of its additional anti MM effect, but hadn't got round to asking my Consultant, (so busy keeping her from giving me other treatments!), but this month she brought it up quoting NICE si I was pleased to take her advice. It is an inconvenience having to go to hospital twice a month; one day for blood test and next for injection, but, like you, I have never found taking the tablets easy.

I hope i have a better time next month, they also had to have three goes to get the canula in!! However, having read on line a fact sheet, after I got the temperature, for which I'd been given no warning, I was interested to read, that it is also a chemotherepy drug for Bone Cancer. (Just shows, I should be more open minded about chemo!)

Best wishes David. If you want it, NICE is on your side so cost shouldn't be an issue.

Mavis

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