You are here

Calcium Levels

Hi,
I'm new to this forum. My names Debbie and I'm from Australia. Firstly I have found this site wonderful, it has so much information. I was diagonised in June 2005. I have been on 400mg Glivec since July 2005, so far it has been working well. I have been in remission for 18 months now.
I saw my specialist yesterday and he said my calcium levels are a bit low but they are OK. I was wondering if anyone else has this problem and if they know of any supplements that can be taken to help.
Once again I think this forum is really good. I hope everyone stays healthy.

Bye for Now
Debbie

Hi Debbie
Glad you found us. We do have some more Aussies on the site may be they will pop up.
Re calcium levels - you could try a calcium/magnesium supplement this should help also with Glivec cramps.
Whereabouts are you in Australia ? Which centre do you get treated at ?
Is Glivec readily available to all CML patients in Australia now ?
Best wishes
Elizabeth

Hi Elizabeth,
Thanks for replying to me. I will see how my levels are next time I have a blood test. I have one every three weeks.
I don't suffer to many cramps thankfully. I do get aching legs and arms off and on, but it's not to bad.
I'm from Brisbane which is in Queensland.I see my specialist at the Mater Private Hospital Medical Centre. I'm not sure if Glivec is readily available to everyone yet. I was lucky that they found my CML very early and they put me on it straight away. The tablets cost $3819.00 australian dollars per month. The government pay for the majority of it though.
It's good to read that so many people have had success with Glivec.
Hope to hear from you again. Thanks for your help.
Do you mind me asking how you are going? Are you on Glivec also?
Where are you from?

Thanks for your help
Debbie

Hi Debbie
Glad to hear your government pays for the majority of Glivec costs. In the UK it is front line therapy for CML and everyone gets it free on the NHS.
I was on Glivec for four years and it was working very well on my CML but then I acquired another leukaemia [very rare] AML and I had to have treatment with chemo and then had a stem cell transplant in 2005. I am doing great now ! You can have a look at my diary on the Home Page - scroll down. I was dx with CML in Feb 1999 before Glivec was available. We really had to fight for access to this drug in the UK. Glivec has revolutionised the treatment of CML and many patients diagnosed today do not realise just how lucky they are to have CML in the Glivec era. CML is no longer a death sentence. There are new second generation inhibitors coming along also which one day will replace Glivec and who knows the elusive cure may not be too far away.
I am going to be in Australia next Jan/Feb and we are going to Sydney to stay with friends and then fly to Cairns and drive down to Brisbane, stopping en route for a spot of snorkelling etc.... may be we can meet up.
Any other aussies reading this, if you live in that area would be great to meet up and spread the word of CML Support.
Best wishes
Elizabeth

Hi Debbie

I am currently taking standard non prescribed calcium additive as my own levels are low, I suffer from cramp if I dont take it.
I have been on Gleevec since August 2000 and still doing well, started on 400mg, then 12 months ago increased to 600mg, then back down to 500mg. during this time my PCR has been low and is currently down to .0028

Keith Sharrock

Hi Keith,
Thanks for replying. I will talk to my specialist about my calcium levels next time I have a blood test, which will be in two weeks. I don't get cramps, I get aching lower legs and arms. I get a bit tired ever so often but apart from that it's not to bad on the Glivec.

Hope to talk again
Debbie

Hi all,
I posted a similar query a while back as I found my levels had dropped significantly - I need to take double the non prescription dose to maintain okay levels. If i don't take them I get worse cramps. I find that a Glucosamine/Calcium ( mix is even better and as I'm over 40 supplements are probaby a good idea anyway??. I use Calcia brand which are the nicest to take and I've tried many brands - they're all a bit large and make me nauseous.
My consultant - DR Cavenaugh at St Barts in London said there was team looking at this at Barts as it was getting common - the endocrinologists he said. I'll post any info I can get from my next visit which is in a few weeks.
Hope all's going still well for you Debbie
vicki h

hi Vicki,
Thanks for replying to me. I will wait til next weeks when i have another blood test to see how my levels are then. I don't suffer cramps but I do get aching legs and arms. I'm due to have another Bone Marrow biopsy in October so hopefully everything should still be OK. I don't know how it works in the UK but here in Australia when your on Glivec and the government are paying for the majority of it you have to have a BMB eveery six months. I don't know how long that has to go on for though.
Hope everyone is keeping well.
Bye for now
Debbie

Hi Debbie
I'm from Brisbane too (though moved 6 months ago, but still visit Brisbane every 3 months) diagnosed Aug 2005!! My specialist is at the Mater too. I haven't had any problems with calcium levels, occasionally I've had to take a magnesium supplement for cramping, my biggest "problem" is the typical eye puffiness. My last two BMB's were negative and my specialist said I now only need annual biopsies, still have monthly blood tests though.
Hello to all my fellow CMLers!!
Kathy

Hi Kathy,
Thanks for answering my question. I was also diagonised in 2005. I'm still on 3 week blood tests and six monthly bone marrow biopsy. My eyes are puffy most days also. My specialist is in the Mater Private Medical Centre, wouldn't it be funny is we saw the same one. I had a bit of a bad blood test a couple of weeks ago, so had to have a early than expected biopsy done. Haven't got all the results yet but he said the cml hasn't come back, thank god. Hope to hear feom you again.

Debbie