Looking for suggestions/tips on Zomeeta

Hi to my wonderful peers, I had a bone density scan and was told I have osteo in my hip and femur… sigh… onc has recommended bone strengthening med which is Zomeeta. Has anyone of you been on this med? Could you please kindly share your experience, such as side effects if any. I am so reluctant to go on more med but was told that if I don’t take this med, the risk for bone fracture is high… sigh… looking forward to your replies. Thanks everyone and hope you all have restful xmas.

Hi siggi, i have this treatment every 6 months as an infusion at hospital. It takes about 30 mins via drip. I have only had it twice so far but with no side effects that i have noticed. I do get side effects from letrozole and abemaciclib though, so if the side effects are diarrhoea and stiff joints i already have those and wouldn’t notice any extra!!!
With this drug there is a small risk of complications if you have dental problems, so i had to see my dentist first. I had a wonky wisdom tooth which wasnt causing problems but which was potentially going to in future, so i was advised ro have it removed before starting zometa, which i agreed to
Hope this helps and hope you get info from other people’s experiences too, to help you with your decision.
Best wishes julie/ northernjay
xx

Hi @Siggi

I’ve been having 6-monthly Zometa infusions for the past couple of years. I haven’t noticed any side effects until the most recent when I got a bit of cramp in my leg during the infusion and on and off for a few days afterwards. Otherwise it’s been absolutely fine. Best of luck x

Hi Siggi

I am on 6 monthly infusions. For the first one, I felt like I had a flu jab - just a bit achy and thinking I was coming down with something. Certainly not ill. It only lasted 36 hours (pm appointment) - went to bed on day 2 and woke up on day 3 absolutely fine.

I’ve now had #5 of 6 over 3 years and I’ve not even been aware of having it from the 3rd session.

Press for the infusions as the tablets are a pain! I was on daily tablets. They are a nightmare to take - 1st thing in the morning, can’t eat for an hour after, only water for 30 minutes after and be upright for either 30 or 60 mins (can’t remember - more than likely an hour because of what comes next…)

I go swimming at 7am, it meant I had to take my tablet at 6am (as you are not upright swimming). I was waking up at 5am ready to take the tablet. Every single day! Within 2 months I was waking up at 4am!

I asked my onc consultant about changing. I was prepared to change to a weekly or monthly tablet. I really wanted the 6 monthly infusion.

She jumped in before I even finished my rationale of the daily tablet affecting my quality of life to offer the 6 monthly infusion.

There are some very rare jaw bone side effects that people find scary. It’s so rare. I chat to an onc practitioner nurse in the week before my infusion (she checks all OK) and my dentist was all over me and saw me ahead of starting the tablets and changing to the infusions.

The minuscule risk has never bothered me.

I hope this helps along with others’ experiences.

@Sephie @Gelbel @NorthernJay Thank you for sharing your experience with Zometa. This is invaluable information. I find that I am learning so much from all of you and I am forever thankful that I have found this life-saving forum. I have one more question. My recollection from reading a post is that we cannot have invasive dental work while on Zometa. What would be considered “invasive”? Root Canal? Crown? Does this mean I can never ever get any of this dental work done years down the road? Sending strength and good wishes to you all.

Hi Siggi

It big stuff like crowns and extractions etc. It can be done but at dental hospital rather than your dental surgery. I’ve a good friend who’s a hospital dental nurse and she told me this when I asked her a few questions prior to starting. She had Zometa patients in theatre for the extra care needed for the procedures.

Before your start (if you do or even if you don’t), see your dentist for a proper check up and they’ll be able to answer your questions. The receptionists are clued up too - cracked a tooth just before I started treatment and they got me within hours.

Never thought about the duration, then mine’s only for a few years.

Hi Siggi,
I have been onzometa for about 12 years. I have bone mets so Istarted on 4 weekly infusions and after many years am now on 12 weekly.
It can be the case that the first one or maybe two infusions can make you feel a bit flu-ish for a few days but this doesn’t happen to everyone. There is also the risk of dental complications if you have extracions and you would probably need a break whilst any sych dental work was being done until healed.
I try to drink quite a bit of water on the day and the following day. I can’t say that I’ve noticed any real side effects. Just look after your teeth as much as you can.
Good luck x

@JulieD
Thank you so much for sharing your experience and knowledge about Zometa. This is so helpful. Thank you for making a difference to my life. Sending you love and hugs. From Siggi.

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I am on my third zoledronic acid infusion aka zometa, and I have just developed bad mouth ulcers after last Thursdays one. Apparently this is a rare side effect. It’s made me a bit wary of having more of them, but I am now half way through my plan which is have six over three years. I wouldn’t say it’s completely put me off, but I might stop at four, that would be after my next one due in June 2024.

I got flu like symptoms with first one but not enough to stop me going to the supermarket and getting on with other things e.g. driving. I also felt tired so took a few paracetamols and had afternoon naps. After that I was fine although the one last week made me tireder than usual. But that may be because I have developed high blood pressure maybe due to the letrozole I’m on or just old age. It’s very difficult to be sure what is the cause of anything when you are taking as many drugs as I am.

I have joint pain due to letrozole, and for this I have been taking daily doses of ibuprofen. Unfortunately I have read this can be bad for hypertension (at least that was my reading!) you need to be a pharmacist and an oncologist to really know everything.

I am thinking of taking up a Doctorate although at 68 maybe I will not complete it. My mum and Dad had one so I almost feel obliged to follow in their footsteps.

Love Seagulls

Hi @Seagulls, so sorry to hear of your experience with mouth sores after your most recent infusion of zometa. You advised you are on many drugs. Aside from Letrozole, may I ask what other drugs are you on. As for me, I take Letrozole and Abemaciclib. I don’t get much joint pain from Letrozole but it gives me hot flashes. Thank you so much for sharing your experience with Zometa. I hope your sores get better. Thinking of you and sending hugs.

Thank you Siggi for your kind words. I contacted my oncologist and she said as I wasn’t going to have zometa again until July 2024 I should see how I am then before I decide to give up.

Mouth ulcers are a pain but they do go usually and the NHS site describes treatments available for them so I can try these before I get cross.

I feel hard done by, I have January blues, I despair about our world leaders and the mess we are all in. I am in a slough of despond. Let us pray:

Yea though I go through the valley of death yet shall I fear no evil.

I am a born again atheist who went to a Church of England primary school. Because of this, I seem to get old remembered Biblical phrases popping into my mind unexpectedly. E.g. when having iv infusions.

“Forgive them for they know not what they do”
“Take up your bed and walk”, The good Samaritan"…

I hope to help a few people to have a laugh or two.

At the start of my infusion, a nurse wanted to take my temperature which involved sticking an instrument into my right ear. I was full of fear and in a bad mood, but I took out my right hearing aid, and then she started to insert the catheter in my elbow, and struggled to find a vein. I told her my father had veins the size of a hamster’s. Dad had a former vet’s nurse taking blood who took blood from small mammals. Ideal for someone with my tiny veins .

I was trying to say like father like daughter. Anyway, she finally hooked me up and then there was a loud warning klaxon noise and all the nurses rushed off to look after someone who was in more trouble than me.

Time passed and everyone came back, and it appeared it was a false alarm so that was good. Eventually my infusion stopped, it was rather slow and in a very cold room, no entertainment available so I was reading Jade’s autobiography.

Her life was a lot worse than mine I can tell you, but she died aged 27 of cervical cancer and the Government is now vaccinating young school pupils agains the HPV virus which causes cervical cancer in most cases. So maybe some good came out of Jade Goody.

I am reading Jade’s book but eventually the IV machine stops and I am unhooked from it and invited to leave the premises as soon as possible. I put on my coat and wondered where my hearing aid had gone. I took it out to have my temperature taken, so I decide the Nurse has taken it which she denies, leading me to suspect her of theft of one very expensive NHS aid.

A frantic search of the room and down the sides of the chair ensues, then the floor, waste bins, and there is no sign of it anywhere. I get very annoyed and say ,“well where is it then??”.

I was wracking my brains as to where I could have put it, when I for some reason patted my ear, and was shocked to find my right hearing aid WAS IN IT…I couldn’t stop laughing, and in the end nor could the Nurse! What that poor woman had to put up with.

Seagulls

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i take AdCal calcium tablets twice a day, letrozole once a day, sertraline, paracetamol and ibuprofen for letrozole pains. laxido for constipation caused by letrozole. co-codamol and chlorphenamine to get me off to sleep at night.

I have a high fibre diet with fruit, salad, potatoes, pasta, a little cheese, lots of fish. i don’t eat between meals. since watching Michael Moseley last week i am limiting my cups of tea each day to two or three and having lots of cold water instead.

I may not live any longer but it might feel longer!

cheers Seagulls

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Hi @Seagulls , thanks for sharing your list of medication to. What is the reason for you to reduce your tea? Is it due to the chemical, tannin? Is tannin good or bad for breast cancer? I hope you will live a long life…. All the best.

It has caffeine in it at a lower rate than coffee but it still has an effect on the body. By drinking plain water you are avoiding the impact of caffeine on the quality of sleep you get. At least that’s what I remember as both my husband and myself watched a programme by Michael Mosley about how to eat and drink more healthily.

He’s a bit of a killjoy on GB tv but he does have practical ideas to improve sleep and general health. He’s successfully lost weight himself so that’s impressive. Lots of health professionals look decidedly unhealthy, especially breast care nurses I find. In the UK that is.

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