Is it possible to stay on a trial but have dosages tweaked? I had zometa last Friday and had a few weird things happen vision wise, I spoke to triage today and awaiting a call back 
Hi @Byrnebaby,
Good that you’ve spoken to triage, that’s definitely the right move. Hopefully they’ll be able to get back to you quickly and work out what’s going on with the vision changes.
If you want to talk anything through while you’re waiting for the call back, our @ClinicalTrialsSupportService might be helpful - they’re specialists who understand trials inside out (and are available weekdays 10am-4pm) and are there to support you throughout your clinical trial journey.
Let us know how you get on with triage,
Ceri - Blood Cancer UK Support Services
3 Likes
@Ceri_BloodCancerUK thanks Ceri, they’ve been back in touch and told me to book an eye test, so earliest I could get too it 6th February 
costs a lot of money this being ill doesn’t it 
Hi @Byrnebaby ,
Sorry to hear you have had some problems with your vision since your zometa infusion. Well done for reaching out to triage and booking an eye test although the 6th Feb feels like a long time for you to have to wait. Are the triage team at your hospital the chemotherapy nurses?
Have you let your specialist nurse or your trial nurse know? they maybe able to escalate this eye appointment for you or get someone to review you at the hospital?
Zometa can also affect the salts in your blood and this can occasionally cause symptoms. Are you having bloods anytime soon? I feel like you might be having your treatment tomorrow (from your other posts!) Dexamethasone can also visual changes so please do let your team know.
Medication doses can be tweaked so its important to let your haematology team know about these side effects. Just to reassure you that Zometa is not part of the trial but an important supportive medication given as part of treatment for Myeloma used to protect and strengthen bones.
Let us know how you get on
Take care
Fiona (support services nurse)
5 Likes
@Fiona_BloodCancerUK thanks Fiona, I think the triage I ring is for oncology, she did originally put me through to a trial nurse, who said they don’t deal with that and she put me back through to triage, that was yesterday, when triage rung back this morning she said she’d spoken to trial nurses and they said it wasn’t a known side effect and to just book an eye appointment to make sure there are o concerns yes, I had bloods yesterday afternoon, I was in the hospital and thought I’d maybe be able to see someone while there, I’m on day 15 of cycle 1 tomorrow, that’s the first appointment I could get that I can physically get too, as I live rural, hubby is having to nip out of work to take me for bloods Wednesday, consultant Thursday and chemo Friday, and each appointment can never gauge when I’ll be finished, so it has to be Saturday , not ideal I know, but I also have to think of keeping husbands job
3 Likes
Thanks for confirming @Byrnebaby I appreciate how difficult it is attending all the appointments you currently have whilst your husband is working. Hopefully, it they will settle down a little from cycle 2 onwards. I am glad you spoke to someone and had your bloods checked. I would still mention the visual issues when you are in for your Day 15 tomorrow and see if you can be reviewed whilst you are there.
Take care
Fiona (support services nurse)
3 Likes