Hi just wondering… I have had 4 lots of denosumab so far. After the first i felt I was going down with with flu - aching muscles, joints head etc. Each session this has got worse and lasted for a longer period of time. The final dose I actually felt I had flu all the usual aches and pains plus real chills and a 24hour fever also abdominal cramps and an inability to eat. This lasted for 3 weeks. I am not the sort of person that goes of their food but felt how I imagine a gastric band would feel - actually lost 9lb in 10days and I am now a dress size smaller. I am worried things will be worse next dose on friday.
An American site cites these as SE of Denosumab but the BNF does not.
Is this the drug or have I had some virus i.e. co-incidence? Anyone else been here?
Thanks Jacqui
Hi Jacqui
You may be able to talk to someone who has also had this treatment via our ‘One to one support service’, please feel free to call our helpliners who will be able to refer you to this service if there is anyone who you can talk to by email or telephone. Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
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Take care
Lucy
Hi Jacqui
Sorry to hear this. I’ve had 3 doses and not had any of those effects other than aches on my first dose, where I knew my bone mets had spread to. Maybe it is coincidence, but not a nice one. Sorry I can’t help any further but sending you some hugs. See if you get any other replies of a similar experience or speak to your BC onc/team? Unfortunately though, as this drug is so new I’m not sure they will have any answers.
Nicky x
Sorry to hear this Jacqui.
Really sorry to hear you experience so many SEs with Denosumab. I have hardly any SEs until now. How bizzare. I know everyone is different of course. totally agree with Nicky. Speak to your BCN or to your oncologist. Maybe they can give you something in advance to help with SEs
all the best for now
Valia
Hi,
i have just had my 6th injection of denosumab and after having relatively few side effects for the first 5, this one has knocked me off my feet, literally. I have spent the last four days in bed with flu like symptoms, aching joints, muscle pains, headache, shivery and extreme fatigue! I am going to discuss with my Onc at NA, and maybe discuss having it less often as I currently have it every three weeks when I have my Xeloda.
cheers x x
Interesting. I have had 2 jabs so far plus appendix out and have been so fatigued I couldn’t keep eyes open this last weekend. I have assumed it was appendix recovery or a bug or effects of new tablets but perhaps not. Never thought it could be denosumab as did not have any flu symptoms or aches and I had been fine on zometa. It’s a minefield.
Liz
I was very ill after my first Zometa injection, literally in bed for a week, bad tummy upset - non stop for 3 days - and flu like symptoms. Have now been switched to Denosumab. As you all say, this is a very new drug, and they really have not got the whole picture of how this will affect patients long term. I had a slight rash after the first injection, but no other symptoms. In view of this, I now have to have intravenouse access with Piriton and steroids every time I have the injections, plus 4 hours in the department to observe… Been fine until the last one. I started feeling sick in the department, but the nurse gave me a sickness injection and the nausea subsided. But I have been far more achy then the last couple of times and also caught what I think might have been food poisoning - been to a big party 2 days after the injection and might have eaten something ‘off’. Nobody else was ill, so difficult to know whether it was the effect of the Denosumab or just a bout of sickness. Will have to see what I feel like after the next injection. This treatment is taking out a very large chunk of time every 4 weeks, b/t the day before and then a whole day in the chemo ward on the day, and the feeling a bit off for a couple of days…
Hi There
I am interested to read bout your experiences. I saw the doc on the chemo ward when i went for my last injection, he said it was not a case of SE but a systemic reaction possiblly due to s sudden drop in calcium level’s. Must confess I am doubtful - the illness lasted about 3 weeks.
Tried a second shot and was issued with antiacids and anti nausea drugs. this helped to combat the stomach symptoms (altough 10lb weight loss was an attractive SE) but still had the cramps, aches fatigue and shivers for another 3 weeks. just feeling better and lo - back to get some more tomorrow. Good thing is that I am seeing onc after much delay when I will be in thick of it so possibly may be taken seriously.
Will let you know the outcome.
Goodluck with yours Jacqui