[MothasParticipant]

I think it's a bit of a post code lottery with zometa.
Some people seem to be almost permanently on it, others only for a year or two.

[DebsParticipant]

Just to say that I had my zometa last time over 30 minutes and it made the side effects much better than when I had it over 15 minutes. (Previously I'd had no problems with it).

I've been on zometa for about 3 years now (although I came off it for my transplant in 2011 – blimey it doesn't feel that long ago!), 18 months since transplant. I spoke to my consultant last time about having it long term given that it changes the way the bone turns over. We're going to discuss it again in 6 months as I think it could be an issue for younger patients if they are kept on it too long. But that is only my naive view and has no medical background to it at all! Again it is all about weighing up the risks of taking it, against the benefit of it being thought to prolong life.

Deb x

[pollyParticipant]

Hi Tom

Same here when first introduced to Zometa some 18 months ago had a bad night with the said symptons very unpleasant floored mentioned it to my consultant so second time and thereafter given one piriton
tablet and 2 paracetamol some 20 minutes before a 30 minute infusion and that cured it never looked back hope this helps.

Polly

[comfortablynumbParticipant]

Tom. I was told by one consultant that once you have had just one infusion of Zometa, you never need it again. Then another consultant told me it was best to keep on it as it was thought that it may fend off relapse. There has never been any suggestion of ever being able to stop taking it. (I get it every 2 months). This is East Surrey Hospital, by the way.

Debs. What does "it changes the way the bone turns over" mean please?

John (Comfortably Numb).

[DaiCroParticipant]

Hi John,

After 4 years I had my first infusion of Zometa tagged on to my 2nd infusion of Bendamustine Cycle 3 last month. Tomorrow will be my 2nd infusion of Zometa with my 2nd infusion of Bendamustine Cycle 4… I had the symptoms described by others as 'Zometa Flu' last time but nothing too unpleasant… I will monitor and report over the next few days. 😎

I was told that the Zometa will be tagged on to my current treatment for its duration and thereafter on a monthly basis. Of course I don't know yours or any one else's prescription but I imagine it's more or less universal… so why do some people get it monthly and others bi-monthly etc? Is it a matter of how long you have been on the Zometa or its equivalent? i.e. Have you been on it for a year or 2? I have been told that the course is normally once a month for 2 years and then finish… but I'm sort of confused by reports from users on this site and some conversations with patients at the hospital whose experiences differ from person to person. :-/

Regards

Dai.

[eveParticipant]

Hi Dai

The way they work it you begin with Zometer once a month,but it becomes less effect as time progresses,by the time you haveSCT or remission you attend hospital every 2 months so they fit Zometer in with your hospital regime Eve

[meganjaneParticipant]

Hi Dai,

There does seem to be varying information depending on who you talk to. My husband Phil receives Zometa once a month and was told it would be for two years. When Phil was on treatment it was added on with the other drugs once a month and was still given while he was in hospital for his SCT. Now that he is post SCT he is having it once a month when he goes in for blood tests. It seems to be flexible as it will actually be more than a month the next time he goes in but we were told it will only be for two years.

Megan

[DaiCroParticipant]

Hi Eve and Megan,

I had my second infusion of Zometa today after my Bendamustine infusion. I asked about the regime and I was informed that I will have 8 monthly infusions, followed by 8 bi-monthly infusions and then stop.

So that's the Nottingham regime. 🙂

Regards

Dai.

[andygParticipant]

Hi Dai.

I've been on Zometa since October 2011 and I have it once every 4 weeks. It has two actions, I'm led to believe, one as a bone strengthener and another that it has been shown to work against Myeloma as well.
I haven't been through SCT so maybe my regime maybe a little different but I haven't been told I will be coming off Zometa though I still have 6 months to go to the 2 year mark.
I have read reports that question whether it should be stopped at two years or carried on. I think the jury is still out on that one at the moment so I guess it's all down to each individual consultant or hospitals policy. As always with myeloma everyones journey is different.

Every day is a gift

Andy

[TrigletParticipant]

Dear All

Haven't posted for a while so a bit of recent history – I'll try to keep it short. I finished a course of treatment in December,after I relapsed after 5 years post SCT. My pp's had levelled off around October and the Prof didn't think the treatment would do much more for me. He was right. since finishing the course with my pp's at 18 in December (half what they were when I started !) they had risen to 20 in January (was it a blip?. In February I was admitted our local hospital with a spurious infection and low neutrophils for which no cause was found. But it was noted that the said pp's were now at 24!!! What??? I felt I was having a Dai moment i.e. ok so long as I am on some sort of treatment, (sorry Dai). Having relapsed twice now in rather rapid succession I was worried to say the least.
Crumbs this is getting long winded.

Well it was decided that Velcade was the answer this time, and what I really want to say is, how great is this site?!! I had my first dose of Velcade yesterday, and my first ever infusion of Zometa. Today I've felt really good, then a couple of hours ago a temperature developed 37.8 plus achey pains in my legs/ribs, distinctly fluey. So onto the website and consult my friends, to see if any one else etc etc etc. And there you are; Bless you! I really think it's a case of Zometa flu I have. Obviously I will keep a check on my temperature that it doesn't go too high but shall resist the urge to get to the hospital immediately, specially as the weekend looms.

Andy, my prof has the same opinions of Zometa as has been explained to you by your medical team. Also, so very glad to hear of your latest results – keep posting such smashing news!

Love and a big thank you to everyone

Stay well

Rosie x

[MothasParticipant]

Thanks to everyone who has replied to the thread.
I've had around 12 infusions of zometa now and only had 'flu' after the first.

Interesting to see people's different infusion regimes, mine is once a month and will be for 2 years.

thanks to all.

tom

[DaiCroParticipant]

I had my 2nd infusion of Zometa last Tuesday, tagged on to my 2nd infusion of Bendamustine Cycle 4. I had similar side-effects to those described as fitting to "Zometa Flu' after the Ist infusion but nothing drastic and the side-effects disappeared after a few days. This time it has been different.

First off I have to say that I have no way of knowing if the way I have felt over the past 6 or 7 days has anything to do with Zometa… but… I have felt awful, breathless, heavy limbed, no energy, very much like the flu symptoms of old. I had a middling, annoying temperature of circa 37.5 for a couple of days but that settled down and for the past 4 days it has been normal. At first I was concerned (especially with the rising temperature) and was ready to ring in in once the temperature reached 38… but it never did. Our instructions are to ring in in our temperature reaches 38 or if we feel 'unwell'. I most definitely felt 'unwell'. But then I remembered the "Zometa Flu' post on here and reread and checked my symptoms against those remarked upon in here… and I had a perfect match… most definitely 'Flu' like.

I still feel slightly unwell but I am feeling slightly better… so I will watch and wait and see if the symptoms disappear. I hope that this is a 'one off' as I don't think that I could cope with feeling so ill after every infusion… although I am willing to accept that the way I feel is a combination of the chemo and the Zometa… but even so.

I can cope with almost anything, as long as I know what is causing it… and that it has some benefit. What I don't understand is why there is no warning of possible side-effects from the medics… surely they know about these side-effects? If not then I am going to point them out and tell them that they are recognised by a number of different patients in a number of different locations… they should be on the ball with these things.

Regards

Dai.

[MothasParticipant]

Dai sorry to hear you're having a rough old time of it.

I read up on Zometa when I heard I was having it, and the flu symptoms are listed.

My experience of the staff who have given me the infusions is the same as yours though, very few seem aware of it. I think it's a fairly common side effect.

[tomParticipant]

Hi Dai

Am Sorry you have the Flu symptoms with your Zometa and no one made you aware of it, I can say that I was told what Might happen whn I was going to get my first one and was given a Sheet to take home and study with what migh or might not happen after Zometa inf.

Hope its not proper flu you have and don't know Dai.

Tom Onwards and Upwards

[DaiCroParticipant]

Hi Tom x Tom (I'm a Thomas too but go by Dai),

I have seen that the symptoms are listed and a nurse mentioned a sheet last time… she asked me if I was given one and I said no… she said I would have one to take home but I never got it… I will ask for one next time I am in.

I don't think it is proper flu Tom, I don't have any of the other associated symptoms such as runny nose, temperature, sore throat etc, etc. §so §i'll put it down to 'Zometa Flu', being Neutropenic and possibly anaemic… and I'll take it from there.

DexDay tm – tomorrow, so happy days. 😉

Dai.

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