What happens now I’ve had my 6th (last) Zoldrinic Acid Infusion?

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Hi. Can I ask for others experiences and advice please. I had my last/6th Zoldronic Infusion last week. I asked the infusion nurse what happens now. She said she didn’t know so probably best to speak to a breast care nurse or GP. But surely there is something concrete in place with monitoring calcium and kidneys in particular when you finish your course of infusions? I am a bit concerned, as previous post I contributed on about calcium. As those who are or have Zoldronic infusions know you have to have a pre infusion (full) blood test. I always asked for a copy. About 18months ago I noticed my calcium level had gone up and technically was higher than recommended. I just want to know who is going to ask for blood tests, who will monitor and who will make decisions? I’ve only ever heard the name of one Oncologist so its not a big team of Oncologist. A

When I contacted a BC nurse as I wanted to meet Oncologist (who I had only seen twice before to discuss treatment plan) to discuss blood test results, in particular my Calcium levels from pre infusion blood tests, and if the AdCal I was taking was making levels high. A telephone appointment was suggested. I asked for a face to face. The Oncologist Dr said she thought all looked okay, but literally as I was leaving the room she asked how many AdCal I was taking (it was one am, one pm). She then said to cut down to one tablet a day, which I have done since. All I really know is calcium levels and kidney function are really important. My calcium levels have come down to a normal range. However I noticed on my last blood test result, although in the normal range, my calcium level was lower than the 6 months previously. I don’t want that to be the trend and I end up with low calcium. Neither do I want to be told take 2 AdCal a day and my calcium levels go too high.
To be honest thinking back I don’t think anyone has told me fully what the full blood tests look at in relation to having Zoldronic Infusions. I’m not sure who checks the results and makes any decisions AND I definitely dont know what happens now the infusions have ended . I had a Dexa scan last year and I think they will happen every 2 years. Is that part of the plan? Who will monitor me and ask for blood tests? Who will check my kidney function and calcium levels and make decisions? Can anyone advise me what the protocol is and what their experiences have been…Thank you…..PS. How can I check/find out my Vitamin D level? I can’t see Vit D on any blood test results, so how can I find out?? I live in the Surrey area. Hope this all makes sense to someone who can kindly answer my questions. Thank you in advance.

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Hi Bluebell22,

Thank you for your post.

It’s understandable you want to know what happens now as you have completed your course of zoledronic acid infusions for primary breast cancer and hospital treatment. It can be confusing knowing who to address your questions with when you finish this type of treatment.

Zoledronic acid can cause calcium levels in the blood to drop. It sounds like you have been having regular blood tests throughout your treatment to monitor this along with kidney function tests as well. As you say in your post you would like to know what to expect now and how you will be monitored.

As the infusion nurse suggested your breast care nurse, treatment team or GP can discuss if any further blood tests to monitor kidney function, calcium and vitamin D levels are still required now you are no longer having infusions and other investigations including DEXA scans. They can also advise how long to continue taking Adcal.

You may find our health information on looking after your bones of interest.

It may be helpful to talk through your individual follow up after treatment plan and find out who to contact if you have any concerns or worries, often this information can be available through your breast care nursing team.

Once hospital treatment for breast cancer ends, you’ll continue to be monitored. This is known as follow-up, people are followed up in different ways. How you’re followed up after treatment will depend on how likely you are to have side effects from treatment, the risk of your cancer coming back and arrangements at the hospital where you’ve been treated

Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to help answer your questions, offer support and listen to how you are feeling.

You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

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