[Anonymous]

Hi there,

I get zometa every 4 weeks and thankfully don’t appear to get side effects. A few months ago my hospital appeared to change their zometa policy and moved patients onto 8 weekly cycles. My consultant gave the reason that zometa stays in your system for years so 8 weekly is sufficient (!).  I wondered if other hospitals made such a change. I was a bit concerned as anything I’ve read on the topic states it should be given at 3-4 weekly intervals. Soon after I had a CT scan showing growth in bone luciencies, so managed to persuade my consultant to put me back on 4 weekly treatments. If there’s any chance it will show bone destruction then I’d rather do this. I’m not saying the bone changes were due to longer zometa cycles, but I’d prefer not to take that chance.

Best wishes

JanT

[patsyannParticipant]

Hi Jan

That’s interesting as my husband was switched a few months ago from monthly to 3-monthly Zometa after 4 years. He’s since relapsed (which I don’t think is anything to do with the change) but he’s also experiencing a lot of new bone pain so I queried it with consultant who says latest guidance is that 3-monthly is as good as monthly. That doesn’t really make sense to me but as new treatment not working and that may be another reason for pain we may be clutching at straws here.

Pat

[Anonymous]

Hi Pat,

Yes very difficult to know. It seemed to me that my bone changes had happened within a year when I relapsed from initial treatment, and “watched and waited” for 6 months before 5 months of treatment to prepare for sct. The delayed sct was the protocol for the padmac trial. Comparing CT scans 2 months into watch and wait and another post sct from which I got a stringent response, showed growth of luciencies and new lesions. Although another consultant had said to me that it’s difficult to determine when exactly the damage occurs as depends on which strain of the disease is active. Hence why bmb was required to determine FISH results, to see if I’ve any other horrible mutations along with t(4;14). But results from bmb said they couldn’t do FISH testing as not enough myeloma cells. So I’m non the wiser! Keep asking questions and seeking opinions and best wishes,

JanT

[patsyannParticipant]

Hi Jan

Thanks. We don’t seem to have access to trials locally and have no idea what David’s genetic status is, although the consultant says he seems to have an aggressive version as his responses to treatment haven’t been good. The 3-month gap in Zometa also coincided with same gap in consultations after he’d finished course of Velcade and by the time we had the next one he was getting more pain and pp levels had shot up so I’m not sure if problems would have been picked up earlier if he’d had his usual monthly check-ups. We’re seeing another consultant tomorrow so I’ll see what he thinks.

All the best for your own treatment progress.

Pat

[Anonymous]

Thanks Pat,

I had to ask to be told my genetic type which turned out to be high risk. I think it should be available routinely with bmb results but I have found this isn’t always the case. I understand it is an expensive test to perform, so wondering do labs have the final say. Worrying, especially when consultants specifically requests this.

I don’t think many of any hospitals in the UK personalise treatments, but studies worldwide do suggest certain treatments have shown better results for my type, and I’ve passed this onto my consultant. If we have this information then why not use it.  So it seems to be between how far they can go in that direction and local practice. It did help me getting a 2nd opinion from a consultant I met on the London Infoday who was a Myeloma specialist.

Good luck again,

Janet

[patsyannParticipant]

Thanks again, Janet. It would be useful I think if more information was available on how to find myeloma specialists and where/what genetic tests are available. Most people are so shell-shocked at initial diagnosis I think that we just go along with whatever we’re told. David’s consultant has always been ready to answer questions but it can take a while to find out what questions to ask. And then of course treatment depends on what’s available locally.

Pat

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