[suewiParticipant]

Hi my name is Susan, I am a little confused, I am having Zometa monthly and a calcium tablet daily, but just been reading on one of the sites you should not take calcium with myeloma. Also has anyone on this site not had the sct and feeling ok, I felt that ill when on treatment, I decided not to have the sct, finshed treatment about 9 weeks ago, feeling fine but protein gone up to 4.9, I am getting very depressed been reading to much.

[BADGERParticipant]

hi sue
I didnt have an SCT as my kidneys were damaged PP do fluctuate a bit so dont get worred yet as for calcium I have pamidrinate once a month because i cannot had Zometa which is bad for the kidneys which some times takes my calcium to low so they give me a suppliment just to boost it up a bit to low calcium can give you the shakes and cramps so you can have calcium now and again good luck with your treatments
Regards Jo

[suewiParticipant]

Thank you Badger, sorry to hear about your kidneys, when were you diagnosed with myeloma?. Hope all goes well for you.

[wendyduffieldParticipant]

Hi Susan
If you are having monthly zometa you will be given a calcium supplement to take because the Zometa takes the calcium from your body and binds it to the bones to make them stronger so you in theory need extra calcium although in general excess calcium is not a good thing but its ok if you are having zometa. Your calcium levels will be monitored if you are having zometa anyway. I was ill on treatment too but once you have had the stem cell transplant you wouldn't be on any treatment other than maintenance possibly so it is worth considering. My advice is don't read too much on the internet as it can be depressing or at least limit it to say half and hour a day and be guided by your consultant about what happens next.

Best wishes

Wendy

[suewiParticipant]

Thank you Wendy for your reply, I am 65 I finished my treatment in April and at the moment taking nothing, which worries me slightly, I have thought and thought about the SCT (am I doing the right thing refusing it), but honestly I was so ill for 5 months with CDT, I was more or less housebound, and honesly thought I would never survive the SCT, can't understand why I am taking nothing at all now, my protein levels have gone up a little, but was told this could be a blip.
Hope all goes well for you

[suewiParticipant]

Sorry Wendy hit the post button before I signed off
Take Care
Regards
Susan

[mhnevillParticipant]

Hi Susan

Like Jo I haven't gone down the route of SCT. I am over a year post CDT and I'm still in remission. I would keep your options open but don't be rushed into SCT. I think there is a balance to be struck between drug free living (zometa exepted) and the hope of a long remission. Everyone has to make their own decision about this.

Very best wishes.

Mavis x

[tomParticipant]

Hi Susan

I had a SCT , and doing blooming well with it am pleased to say, I won't tell you not to worry as its normal, but I will ask you to channel your worry to make you feel better with or without drugs/SCT,

Stay strong and well

Tom Onwards and Upwards xx

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