Hi to all Deno users ( can’t remember how to spell or say it)
To say I have had my first lot of deno and have not noticed any side effects. Next one due in a fortnight ,as given every 4 weeks. I did not feel the injection at all so nothing to worry about.
I am lucky that there was no question about funding. I guess we all fit their criteria with having secondary breast cancer with bone secondaries.
I am pleased that we can all benefit from this new drug, only just approved fully by NICE (National Institute for Clinical Excellence)You can look this up on Google. It has had good outcomes in clinical trials and as Swanie said it reduces pathological fractures.
Great idea to set this forum up .
Esha
My funding is through in less than a week!!! First jab tomorrow (would have been today but hospital pharmacy couldn’t order it in time). Can’t wait for it to start working.
Liz x
At my appointment last week I am now going to have Denosumab 4 weekly rather than the three weekly that was first suggested. I didn’t want more than was needed, or licensed for, and also I think there’s now a financial issue that because it’s so expensive the hospital will now give four weekly for everyone whereas they have been accomodating patients to fit in with their three weekly chemo regime. So, second stab later this week. I’ve also been prescribed AdCal and really couldn’t stomach the chewable type - really horrible. I’ve now had my prescrption changed to dissolvable ones which should (?) taste lemony, we’ll see. Is anyone else having calcium supplements or are your calcium levels just being monitored?
Nicky x
Hi Nicky
I am new to this site and think it is an amazing source of information and inspiration. I have had one injection of Denosumab and to be honest am not sure if I had any SEs or not. Unfortunately I developed Breast Cellulitus and was very unwell and hospitalised at the weekend so that the oncs could get the infection under control. I was diagnosed with BC in Oct 2008 and mets in March 2012. I have been receiving parmidronate up until last month and as veins were forever hiding am pleased that I am now able to receive Denosumab.
I have mets to my hip, pelvis and spine but following rads am relatively pain free and very up beat.
Kirst xx
Hello girls,
I have Denosumamb injections too (along with Xelloda and Zoladex). I think I reach nearly a year soon since on Denosumamb. I have to say and thank God for it no side effects whatsoever! My oncologist decided against supplement calcium as apparantely I have may bony lesions 
I take Xelloda for liver mets too. Unfortunately I have been misdiagnosed for the bone mets and before I knew it I had a small fracture in my hip… I had an operations- pins stabilized the bone. So far Denosumamb works well and no more fractures…
Good luck to all of us with this new fancy drug 
Hello girls,
I have Denosumamb injections too (along with Xelloda and Zoladex). I think I reach nearly a year soon since on Denosumamb. I have to say and thank God for it no side effects whatsoever! My oncologist decided against supplement calcium as apparantely I have may bony lesions I take Xelloda for liver mets too. Unfortunately I have been misdiagnosed for the bone mets and before I knew it I had a small fracture in my hip… I had an operations- pins stabilized the bone. So far Denosumamb works well and no more fractures…
Good luck to all of us with this new fancy drug
Hi valkeh, good to know someone who’s been on it as long as you have and had no problems. You must have been one of the first? Hoping it works for all of us as well, it’s a lot easier than IV or tablets I must say!
Nicky x
Hi Nicky,
Yes fingers crossed for all of us. Yes, I guess I am oe of the first. I have a private insurance so initially the first 3 injections were funded by them. After that my GP was happy to continue it for me. I was so glad. Certainly much easier than IV especially as the most of us we have rubbish veins too…
Take care Nicky.
x
Hi valkhe, do you get your Denosumab at your GPs? I asked about this last time I was at the hospital and they said it had to be done there. I know the leaflet says to be done my a health professional but that would cover a nurse at a GPs and would be easier for me. Does your PCT fund this through your GP? I’m not sure if that’s the stumbling block as I don’t think my GP would have funds and I don’t know if you can collect your mess from the hospital pharmacy Nd then get it administered at the GPs. Would save some time I’m sure.
nicky x
Nicky,
I am not sure which PCT has funded. The Oncologist put the application in the ground of no veins and extensive disease.
I am a doctor myself so I self administrate Denosumamb and my ex-partner gives me the Zoladex. I can’t give myself the Zoladex… too big…The first Zoladex though was at my surgery.
Valia
x
Nicky,
I am not sure which PCT has funded. The Oncologist put the application in the ground of no veins and extensive disease.
I am a doctor myself so I self administrate Denosumamb and my ex-partner gives me the Zoladex. I can’t give myself the Zoladex… too big…The first Zoladex though was at my surgery.
Valia
x
Hi everyone. Just thought I’d give an update on my experience of denosumab. Have had 3 injections at the hospital so far, was diagnosed with primary & secondary in Dec 2012. It appears to have virtually no side effects for me at the moment so long may that continue. Combined with Tamoxifen & Zoladex, the onc was really pleased at our last meeting that it was beginning to shrink the tumour. Have CT & ultrasound lined up next month before I see her again.
I was given Denosumab straightaway with no funding issues, perhaps living on the Isle of Wight has some advantages after all!
Helen x
Wonderful news Helen! Hope it stays that way. I hope to get my 2nd dose this Thurs and don’t think I have had side effects from it but a bit difficult to tellas I started everolimus, exemestane and a pain patch at the same time. The side effects I have had do seem to tie up with the everolimus though.
I know one lady who used to come on here who has been on denosumab over 2 yrs(think it was via private health care) and it seems to have kept her stable and with some small improvement.
Liz x
Had my 2nd denosumab yesterday in spite of having been in hospital on Wed night with severe pain - long post in the everolimus/exemestane thread - but good news is that some markers indicative of the bone spread have dropped. Yay!!!
I have to have it done at oncology but have to collect drugs there at same time so that’s ok. Zoladex at GPs. Try to get them all on the same day.
Liz x
Hi, thanks for this thread. I was diagnosed jan with primary and then feb with secondaries to bone. Currently mid way through 6 cycles of FEC, along with zometa, but will be going on to denosumab along with a hormone therapy once FEC is finished. It is great to read some positive stories on it.
aml46 - bumping bone mets thread for you. It may be useful.
Thanks lizcat, i have been lurking on the bone mets thread for a little while now, plucking up the courage/acceptance that it is where I belong. Hope that makes sense!!!
I am one of the valentines chemo girls, which has been a great support (fabby group of ladies), in getting to grips and getting through chemo, but as I edge closer to the end of 6 sessions of FEC (3 down) I know I will have to ‘grow a pair’ and deal with the fact that there will be no end of active treatment for me.
xx
Hi aml46
I had 6 FEC in 2008 when I was first diagnosed with bone mets. It did a great job, as well as bisphosphonates and I then went on to hormone treatment which kept me stable for nearly 5 years. I’ve recently had progression in my bones and, unfortunately my liver and am now on different treatment. When I had chemo I also ‘belonged’ to a group going through it the same time, most of them had primary BC but it was a great support. We have kept in touch since and still support each other even though our group is sadly smaller but luckily the remaining primary ladies have stayed that way. The bone mets thread is a great supportive thread and you will have seen how it helps lots of newly diagnosed ladies as we all have a lot of knowldge and experience of different treatments and especially their SE’s! I’m due my 3rd denosumab in a week as I’m getting them four weekly as opposed to the initial idea of three weekly when I collect my Capecitabine tablets. It’s certainly the easiest of the bone strengthening treatments I’ve had so far and I hope when I have a CT scan in a few weeks it will show that it’s working well. Good luck with the rest of the FEC chemo.
Nicky x
Bumping up for Brighton Belle, Mags.
Hello, everyone!
I’m all set to join you as I’m switching from Zometa and have my first injection on Thursday. It’s great to read the positive posts on Denosumab, not to mention the relief at not having to play hunt the vein for this one!
Good luck to all of us with this and all our treatments! xx