Hi
I thought I’d start a thread for this new bone strengthening treatment so that any of us on it can share experiences, problems etc.
I had my first injection on Friday which was in the abdomen, under the skin rather than into a vein so it didn’t hurt at all - not surprising as there’s enough blubber there to protect me!
I am having regular blood tests before my Capecitabine tablets are dispensed every 3 weeks and the pharmacists at the hospital have requested my blood levels of magnesium and potassum are recorded each time for this (denosumab) drug, presumably for levels not in the norm. I’ve also been given AdCal chewable tablets for Calcium levels which can be casued to drop whilst on denosumab.
Currently I’m prescibed denosumab through the Cancer Fund but I’m sure more of us will be on it in time.
Nicky
Hi Nicky
yes I’m on it and i have had about 5 injections now and don’t seem to have any problems on it so quick and easy! My calicum levels are monitored. I was diagnosed nov 2010 with bone mets from the start whilst pregnant. I have had progression in my bones and I take lapatinib and herceptin as well as tamoxifen and zoldodex. Started desonamb a month or so before my second bout of bone progression was noticed so early days to see if it is more effective but heard great stuff about it. I couldn’t tolerate zometa hence the switch.
Hope u get on with it and hope your new treatment plan works well for you given your recent news (I’m more of a reader than a poster!) i have also been on xeloda( cape)as well it kept the tumours in breast stable but no shrinkage so I had radiotherapy then instead. It is a very bearable chemo which I’m sure you know already!
cant write much my two year old daughter is screaming!!! (Hence I’m more of a reader than a poster!)
charlotte xx
Thanks Charlotte, hope your treatment goes well for you. Must be very tiring with a young one as well but also I’m sure she keeps you going in a really positive way. My 2 D’s are in their early twenties now, can’t believe it myself so get quite concerned with any changes that I have to report, which I hate doing to them 
Hopefully some good news will come back again though. I was on Pamidronate first, which I hated going into hospital for so I asked to be changed to Bondronat tablets which were good for 4 years or so, now on to denosumab, which I still can’t spell without checking first!
Take care
Nicky xx
Hi Nicky
i am on Bondronat (have been since secondary diagnosis in 2006). I have had progression in the last 12 months with FEC chemo 12 months ago and now Abraxane (starting today!). Progression has been in lymphs and in bone. Just wondered why you were switched from Bondronat? And is Denosumab more effective?
hope all is going ok with your treatment.
Smartie x
Hi Smartie
i don’t really know! I would have thought I would have stayed on the bondronat but changed hormone regime. I think he, my onc, just wanted to throw some new stuff at it. So far so good on it and it does get me off the early morning waiting around for my first cuppa.
nicky x
ps good luck with the new chemo. I’m struggling a bit with Xeloda as its knocking me out a bit, much more so than FEC did 5 years ago
Hi Nicky08
I am starting Denosumab in March, my onc had to get funding for it, I have been on Zometa but it was making me ill, i would welcome any info re SEs etc…
Jean
Thanks Nicky, I will ask my onc about it when I see him. Just finished my Abraxane so dosed up on anti-emetics & steroids & hoping S/E’s not too bad, I found FEC really tough so fingers crossed this won’t be as bad.
Hope the reaction to Xeloda improves for you.
smartie x
Hi Jean
i am known (by me!) to speak too soon, so I’ll whisper, no side effects at all, or maybe they are hidden in the Xeloda? I was expecting flu like symptoms that often come with first IV dose of bisphosphonates but so far nothing. The injection is really pain free it can be given in thigh, upper arm or stomach, which is where I had it, no nerve endings so no pain. No bleeding either and no hunt the vein. Will keep this thread up to date, although for whatever reasons the website knows better it isn’t appearing on Latest Posts so I keep missing any added posts.
Nicky x
ps I got funding for this very quickly, within the week.
Hi
I have had my 2nd shot of Denosumab. My Onc was dead chuffed about getting funding. Orginally on Bondronate tablets but found these attacked my stonach so had to take Omneprazole as well moved onto Parmandronate infusion - hunt the vein was getting painful. A single jab in the belly is definitely quicker ond very painless. Get bloods done the same day at the hospital as well. I do have a few mild SE for about 3 days - tired, and pains in my legs, also feel generally under the weather but this passes. Now I know to expect it I just go easy on myself that weekend (get pranged on a Friday)
Overall a thumbs up from me.
Good luck with your treatment ladies
Jacqui x
Hi
Thanks for that Jacqui - it could be some of the reason I’ve been feeling so rubbish since starting this and Xeloda on Friday. I was expecting something but there was no indication on the pack to say these side effects might happen so had put it all down to Xeloda. Good luck with the next pranging, nice to see the medical term being used 
BTW is anyone having this more frequently than 4 weekly? I’m due my next one when I collect my Xeloda but that is three weekly and I don’t really want additional doses if not recommended as I’m not sure what the overall effect would be, and I’m not sure any of the medical team know either which is more of a worry!
Nicky x
Your stalker is here, Nicky!!! Instead of zometa next Thurs, I’m starting denosumab. Onc is putting in for the everolimus/exemestane combo for me from the cancer drugs fund so I won’t be following you round every thread on here just yet!!!
Liz x
And there I was hoping I’d got rid of you Liz
in all seriousness though I hope you get the funding ASAP and that the progression in your bones is halted also ASAP. Good news about the other parts of your CT results and hope the hormone combo works well, I won’t even bother to spell it as I can barely spell denosumab atm!
nicky x
You don’t get rid of me that easily, Nicky!!!
For those who have had zoladex, how big is the denosumab needle in comparison? Should I be prepared to use emla cream for that as well?
Cheers, Liz xx
Having had both myself you should prepare yourself for a gigantic needle Liz, then you’ll be pleasantly surprised to find that it’s a really fine one If you ever had the wbc boosting injections, yet again I can’t remember a single name, I’d say its about that size. tiny, no pain as is subcutaneous, like zoladex,. I had mine in my tummy blubber and not a single thing felt.
Nicky x
Thanks for that info. I did have the wbc jabs and have plenty of stomach fat…x
Nicky when I started my desonamb my oncologist wondered how often to give it as I receive herceptin 3 weekly and the desonamb should be 4 weekly. He decided to keep the desonamb injection at 4 weekly which I agree is the right decision given that’s what recommended. More hospital trips but rather it was right. Hope this helps.
liz the needle is sooooo much smaller than zolodex so not to worry good luck!
ive been having really aching legs recently was really bad but its gone now could be down to the desonamb or one of my other drugs not sure… xxxx
Hi there ladies
I can confirm that musular aches and pain and flu like symptoms are possible side effects of Denosumab - I did a check on the good old internet. However I had these symptoms with the parmandronate as well. Overall I am a fan of the Denosumab as my veins could not take much more mauling. It is also supposed to be far superior to the bisphosphonates in preventing pathological fractures.
Good luck to you all.
Jacquix
Hi just reporting back, 7 days after starting denosumab, that my back is aching like mad I know it’s the region where the bone mets had progressed so I’m hoping the wonder drug is doing its job rather than anything else happening. Other than that no side effects from this to report at all.
Nicky x
ps Newyork, I think I will opt for 4 weekly, even though its a bit more hassle. A discussion and logistical study to be done at my next oncology appointment!
Nicky - sorry your back is so painful. It sounds a bit like tumour flare if it’s in the area where there is spread. Perhaps it’s just your body adapting to the new drug. I seem to remember something similar when I had my first zometa years ago.Discussing logistics etc sounds like a good idea and was what I was doing in a way last week. My next zometa was due this coming Thurs so they will give me denosumab instead, all being well.
Liz x
Bumping up for LizH