Hi all,
At my oncology appointment today, I was offered a trial that is running using denosumab, just wondering if any one else is on this and whether you have any side effects?
Herbi x
Hi Herbi
Sorry I can’t help with this one but bumping this up so that someone else may see it and be able to help.
Good Luck
Nicky
Hi Herbi
I too was offered this and have signed up. I only had my first injection yesterday and I have no idea if it is the drug or the placebo so I can’t help with side effects. I have only taken 1 calcium/vitamin D tablet today so it’s very early days.
I signed up because they then monitor you closely with scans etc so hopefully any future problems would be picked up early. Also I felt that breast cancer treatments are so good now because other women have trialled treatments so perhaps this is my opportunity to put something back. It is a licensed drug already so I felt that I am not taking great risks.
Hope this helps a bit. Do let me know what you decide to do.
Clare x
Hi
I too have been offered this. The info arrived today for me to read. If I take it up it will mean me travelling to another hospital.
Im wondering what to do. There seems to be so much more involved, not sure I can cope with it all. .
Clare. from when you were offered it how long was the process before you started your chemo?
Gill x
Hi Gill
I was offered it at my first appointment with the oncologist on 16th December and had my first chemo yesterday. They try to schedule the Denosumab injection at the same time as the chemo, I am fortunate that it will all be at the same hospital. I did have to go to the hospital 3 times between, to sign up for the trial, then for a CT scan and then for a bone scan. It did seem a big time commitment particularly as I was trying to get back to work following 6 weeks off post surgery and with Christmas in between.
Clare x
Hi
I’ve signed up for a different trial; Pertuzumab which will be be given with herceptin (or not as I won’t know if I have the drug or not). I thought why not. Where would WE be if there were no trials.
I also like the idea of being monitored more closely.
Love Anne
Hi
having read all the info I’m going to phone them tomorrow and go for it.
thanks clare for you’re reply.
Gill
Hi Ive signed up for the trial.
Had my ct scan on saturday, bone scan next week. Start my chemo tomorrow
Claire just wondering any side efects yet?
Herbi did you decide to go for it too?
Anyone else out ther???
Gill
Hi Gill, I really can’t say if I’ve had any side effects from the denosumab especially as I don’t know if I had the drug or a placebo. It was given with my 1st chemo (FEC). I felt sicky for about a week, like a hangover without the fun bit first. I also had an enormous appetite! I have felt well since the first week. The side effects really weren’t too bad, I even managed 2 half days at work the first week and have worked every day since.
Good luck for tomorrow - what chemo drugs are you getting?
Clare x
Hi Clare
I’m also having FEC. Had my first one today, but wont be starting trial until my next one. I may not start it at all as my haemoglobin is very low and they may say im unsuitable. I’ll wait and see.
You mention the hangover without the alcohol i had that for 3 days over the weekend before i had even started my treatment !
Gill x
Hi ladies,
I’ve also signed up for the Denosumab trial today. My GP says that it’s a drug they use to prevent osteoporosis, but this trial is for early stage bc particularly in post-menopausal women, which I am.
The same as you, I’ll get it the same time as my chemo FEC (not started yet as my mx was only 3 weeks ago)then continue for another four years. We’ll be very closely monitored.
It’s good to know what side effects there could be, for-warned is for-armed as they say!
This is another thread to add to as well as January Surgery Buddies and Starting Chemo in Feb!!!
Hugs and xxxx
Di
Hi all,
Yes, signed up for trial and will have second one eith my 3rd TAC next week. Se,s of my second TAC were much worse than my first but don,t know if this was anything to do with trial or not as obviously don,t know if I,m getting drug or placebo, but have had no bone pain or jaw probs so far.
Herbi x
Hi All
Had my second Denosumab (or placebo) injection yesterday with 2nd FEC. Bone scan and CT scan were both normal which is a huge relief.
Feeling hungover today from the chemo and bad sleep last night, needing to eat often and the ginger drinks help but its all bearable so far.
Clare x
Hi
Had my first denosumab injection yesterday with my second lot of FEC ( Im a late starter!) Have yet to take my calcium tablet today , im putting it off as the nurse said it might not taste nice! will have it after my dinner. My Ct scan was fine , but forgot to ask about bone scan ,as nothing was said i assume it was fine. I’ll ask next time.
Gill x
Hi Gill, hope you’re feeling ok after your second FEC. I have my third one tomorrow. Amazingly I am remembering my calcium tablet so far! I have never bothered with any vitamins or other supplements before as I can never remember to take them for longer than about a week. I have mine with my breakfast- they taste ok, I have the lemon flavour but they are a bit chalky.
Clare x
Hi ladies
I was supposed to have my 1st chemo and Denosumab on Wednesday, but from my CT scan, they’ve found x2 enlarged lymph nodes. I now have to have a PET scan to see if this is secondary bc. They don’t think it will be, I may have these enlarged nodes all the time. It’s now postponed the chemo to next Friday. If the PET is clear, I’ll be on the trial. Denosumab is looking at preventing secondary, so I wouldn’t fit the criteria if these nodes are positive. I’m to have FEC too, then rads.
Oh well, these things are sent to try us, aren’t they!
Hugs and xxxx
Di
Di, I hope your PET scan results are good and you can proceed with the chemo and the trial. Fingers and everything else crossed for you.
Clare x
Newc43 - do you mean lymph nodes in your axilla? They are normally not classed as secondaries as far as I know. Not questioning your post by the way, just wonder what nodes you are talking about when you say secondaries?
Love,
Christine xx
Hello all,
Just signed up as I was searching for more info on denosumab and came across the forum. I don’t have breast cancer, but my husband is on denosumab and has been for the last 16 months or so so thought I’d post to give you a bit of information as to the side effects he’s had. He’s having the injections as he has a giant cell tumor and for him it’s keeping the tumor stable. For those getting the injection for GCT it has either shrunk, calcified or just kept the tumor stable. The side effects he’s had have been minimal, he has always suffered from excema but since being on denosumab this has flared up more, and he now seems to have developed psoriasis on the area he had radiotherapy. Another girl on the trial said that she sometimes feels sick after the injection and her joints ache. There’s a website called giant cell tumor connect with a section on there for people in the denosumab trial and what they have experienced. I realise it’s not all going to be completely relevant to you but there’s a few people who’ve been on it for some time now so it may prove useful. Or if there’s any questions you have I’ll do my best to answer them.
I wish you all luck and good health x
Just bumping this up.
I have got a pain in my jaw. Had it for about a week now. Have been to dentist today to check its not my teeth (wisdom). Teeth are fine, will mention it at next hospital visit, 4th FEC next week. Also today got bad headache ,not sure if its all connected.
Anyone else had anything like this??
Gill x