[wifeofParticipant]

Hi,

My husband was diagnosed in January  2014 and since then he has been having monthly infusions of Zolendronic Acid he’s myeloma is the non secretory type so it’s a bit tricky to track. However, we went for our three monthly routine check up yesterday and because his  kidney function was very slightly out of range and as he’s now been having these infusions for two years his consultant decided to stop the infusions as they can have an affect on the kidney. I would be very interested if anyone else has had any problems with it

suzi

[janwParticipant]

Hi, I’m really sorry to hear that your husband’s kidney functions are out of range and as a result Zometa has been stopped. You always will be concerned when you have to stop taking a drug which provides bone strengthening benefits and possible anti myeloma properties, but it’s important your husband’s kidney functions are working within range.

I started on monthly Zometa infusions when it was first approved for myeloma NHS patients around 2011. I was told Zometa should be used for a maximum of two years as recommended in America and Europe. There have always been concerns that prolonged use might cause side effects such as jaw bone problems. Over the years, I have noticed that this drug is also being used for bone strengthening in breast and prostrate patients. I presume it’s still early days as regards use of this drug for two years or more and any possible side effects.

I stopped taking Zometa in Febraury this year following a small area of bone erupting through my upper palette. However, my dental consultant thinks the bone might be tooth rather than jaw bone. It will be monitored for the next few years, because even with Zometa being stopped the drug can remain in our bodies for many years.

I would like to resume Zometa in the future due to it’s bone strengthening properties, especially after experiencing three collapsed vertebrae in 2010. In America some patients are prescribed a reduced dose of once a quarter. I would also like to know whether bisphosphonate tablets are an alternative and whether I should now be taking vitamin d or calcium supplements.

I hope your husband’s kidney functions improve once the Zometa has been stopped.

All the best. Jan

[lindawintonParticipant]

Morning Suzi and Jan. Sorry to hear your husband has had to stop having his bone strengthening infusions. My experience is that I’ve been on primidronate infusions for 8 years since my diagnosis. I was initially told they didn’t know what side effects long term use would have as there were not enough patients surviving !! Thankfully that has changed. The current thoughts as i understand are that each infusion has a long term effect and therefore doesn’t need to be administered monthly. My consultant was considering reducing my infusions from monthly to quarterly as per new guidelines but due to my paraprotiens very slowly starting to rise (first time in 8 years), he has decided to keep me on monthly infusions.i would be inclined to speak further with the consultant Suzi to ask whether the infusions can be started when the kidneys recover and if so can it be done quarterly rather than monthly.

I too have collapsed veterbrae Jan. How do you manage any pain? I have not had the bisphosphonate tablets but understand they do the same job as Zometa, primidronate etc.

Hope things settle with your pallete Jan and that your husband’s kidney function repairs soon Suzi.

Regards

Linda

[janwParticipant]

Hi Linda

It’s good to read you have been having bone strengthening infusions for the last eight years, which have also helped to maintain your myeloma levels. I hope your levels remain low for a long time to come.

The extra bone in my upper pallet might be tooth rather than bone growth. However the amount of bone/tooth being exposed is slowly enlarging and moving position. It’s just a case of watching and monitoring to see what happens. Trying to avoid infections in the pallet is top priority.

The pain from my collapsed vertebrae is usually controlled with the use of fentanyle pain patches, together with daily tramadol tablets. However, I cannot lift any heavy items, undertake activities such as gardening, sport or even household chores such as vacuuming or ironing without triggering pain in my ribs and back. I’ve learnt to live a less active life, rest when necessary to try to manage the usual fatigue from myeloma. Do you suffer with much pain from your collapsed vertebrae?

Jan

[Author]

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