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Anyone else on Denosumab?

105 REPLIES 105
bonariensis
Member

Re: Anyone else on Denosumab?

I started one too but it seemed to fall by the wayside. Too disorganised Woman Sad xx

Carolyn52
Member

Re: Anyone else on Denosumab?

I started a daily log as I wasent sure either.I was ok ( ish) for the first six months but then it was day 4 to 18 every month with extra pain. Seem to be in my back mostly but I did get heady on it then too.
Carolyn xxx
bonariensis
Member

Re: Anyone else on Denosumab?

Had mine today with my favourite nurse. Asked which brand it was as apparently SEs may vary according to brand. A few jabs ago she asked me if it was giving me problems. I said i didn't know as exemstane also causes aches and pains and she agreed it wold be difficult to tell. However aches and pains do come and go so maybe denosumab is contributing. xx

Carolyn52
Member

Re: Anyone else on Denosumab?

I had ten monthly denosumab jabs but was getting lots of bone pain for two out of four weeks every time ....I have switched to six weekly now and feel so much more comfortable. It might not be suitable for everyone but if u r getting extra pain with it ..could be a option .
Xx
bonariensis
Member

Re: Anyone else on Denosumab?

Hi Rosiet Sorry to hear about your progression but tremendous news about a new grandchild. Grandchildren are the lights of our lives. 

Carolyn52
Member

Re: Anyone else on Denosumab?

Hiya Rosie
So envious of your new grandchild ..the smell of a new baby and oh those lovely cuddles you can have...you will forget your aches and pains ..best medicine possible.
I have four grandkids ..youngest 11 and eldest 23 ..so past that stage.
Please keep posting as u r such an inspiration to us here.
Hugs xxx
stresshead
Member

Re: Anyone else on Denosumab?

Rosie, sorry to hear you have more progression but oh what an inspiration you are. I just wish i could have your positivity and determination. I am going to try harder to adopt your attitude.xx

rosiet
Member

Re: Anyone else on Denosumab?

Dear Hollymeg,
Just had CT scan again which shows more progression of bone secondaries and getting some minimal discomfort in hip/leg/pelvis where I have secondaries but all quite "copeable" with paracetamol/codeine as required. I've managed all these years and intend to live with this disease for many more to come! New grandchild due next week so have to keep on keeping on!! Best of luck with your treatment!
Carolyn52
Member

Re: Anyone else on Denosumab?

I thinks its important to keep this thread active as denosumab is always mentioned in other threads ...
Xx
hollymeg
Member

Re: Anyone else on Denosumab?

Rosie that is truly remarkable to hear! Long may it continue for you. Gives the rest of us hope too.. Thank you. I'm still waiting for an appointment to get results from jaw X-ray before we even discuss injections. Seems like I will never get started and all the time the squatters are free to roam...

@nicky08 wrote:
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

bonariensis
Member

Re: Anyone else on Denosumab?

Wow Rosie, you give us all hope. I'm older than you and I find the bits that ache most are the ones that were already aching before I started exemestane/denosumab

Bonariensis x

Carolyn52
Member

Re: Anyone else on Denosumab?

Hiya Mara
Yes ..glad its not just me with the achy bones ..going to ask to go six weekly on the bone juice when I see oncologist in September. Just feel I'm being overloaded!
I see u on Facebook page and follow it .
Xxx
Carolyn52
Member

Re: Anyone else on Denosumab?

Hiya Rosie
What an inspiration you are ..21 years is definately a record and thank you for posting.
We forget sometimes about ladies that are living quality lives and don't post here.
Thank you.xxx
rosiet
Member

Re: Anyone else on Denosumab?

Hi All,
Have been on exemestane for years and Denusomab for a couple. No problem with treatment. Multiple slowly progressive bone secondaries for over 21yrs now after initial breast cancer in 1991! Have aches but as you say could partly be due to age (64)! Feel very blessed that I have managed to live well with the disease all these years. Good luck to everyone!
MaraUk
Member

Re: Anyone else on Denosumab?

hi Carolyn

 

i have the sane symptoms saw  onc yesterday  he said we are not alone. I wonder if it's our age maybe our creaky bones  are more sensitive xx

 

hollymeg
Member

Re: Anyone else on Denosumab?

Thank you ladies for your replies. It's reassuring to know it's doable. Still worried about what I have to face x

Coolgirl
Member

Re: Anyone else on Denosumab?

Hi Hollymeg........I have had monthly Denusonab injections since March 2013 and haven't had any side effects (touchwood) so far. Hopefully, you will be the same.xxx

bonariensis
Member

Re: Anyone else on Denosumab?

Hi Hollymeg

I'm on exemestane and denosumab. You'll already know what side effects you have from exemestane. I have joint aches which come and go but mostly come and it's hard to tell which drug causes them - probably both. The injections are not bad. At least they are not into overused veins.

Bonariensis x

Carolyn52
Member

Re: Anyone else on Denosumab?

Hello again
You have posted to a very old thread which is two years old ..hope u get some replies.
I'm on denosumab ..have had nine now ..it's easy ..just a little jab in the tummy monthly .I will b honest ..I have been getting a few bone pain with it from day 4 to day 18 lately ..it's not agony but means a paracetamal or something .
I'm one of the few ladies that's gets any problems ..nearly all the ladies on bone Mets thread have no side effects at all.
Hugs xx
Marirose
Member

Re: Anyone else on Denosumab?

 Hi Hollymeg

 

I have been on Denosumab since Jan 2013 it was new but now I think it is the main bone strengthener. I have never had any side effects although some ladies say they get aches after the injections. It's just a simple injection in the tummy don't even need a plaster. You will also need to take calcium tablets Adcal twice a day.

 

I hope you will find it easy too good luck (((hugs))) xxx

hollymeg
Member

Re: Anyone else on Denosumab?

Hi just wondered how everyone is doing on here. Due to start the injections soon. Any advice?

Aubergine
Member

Re: Anyone else on Denosumab?

Hi, thought I'd pop back in as I've this morning had the first denosumab.  It was delayed a week due to sorting out the budget etc; not arguing the cost but the logistics as it's prescribed at S'ton but given here.

It all went fine, such a relief after the veins had got so impossible!

 

Will report back any problems.

nicky08
Community Champion

Re: Anyone else on Denosumab?

Bumping up for Rowan44

Porkie
Member

Re: Anyone else on Denosumab?

I have been having denusomab for about a year now. Have not really had any problems apart from this time and am experiencing severe bone pain. Been there for 5 days now after jab so hoping it is nothing else. Going to leave it another couple of days then call oncologist I think. x

Aubergine
Member

Re: Anyone else on Denosumab?

This is all so encouraging, a day or so I can easily cope with.  I'd been freezing meals for about 3 days' worth after the pamidronate, just so I didn't need to worry about it. 

I'll probably carry on with that, it's quite nice to have homemade ready-meals for a while 🙂

 

Mema23
Member

Re: Anyone else on Denosumab?

And I started to wonder whether my sciatica pains were down to denosumab. They're not either. Disc fragments from a spinal lesion pressing on nerves! I moved to denosumab cos my veins are rubbish. I understand it is more expensive, it's fairly new but is getting good results. I find it so much easier than an infusion and for me, no side effects.
Haxted
Member

Re: Anyone else on Denosumab?

Thought I'd better post an update on the sciatica-type symptoms which I'd wondered might be down to Denosumab, to alleviate any poss concerns! ..... They're not! MRI has shown I apparently have a slipped disc! Can't blame the drug then!

 

Only side effect I seem to be getting on a regular basis from Denosumab is a day of increased bone pain and a headache. Fine after that.   

beanbob
Member

Re: Anyone else on Denosumab?

Ponsmuir, I had some progression at last scans (caused by tamoxifen failing). So onc decided at the same time as I start capecitabine he would move me to denosumab. Not sure if he did it for medical reasons or to stop me asking why I was on one not the other (I asked him every time I saw him!). He maintains both are good.
MaraUk
Member

Re: Anyone else on Denosumab?

Hi aubergine I m on denosumab. Like you I had long journey to the onc department. I also felt that having to go there every month was very stressful. My onc and GP agreed about the stress,so after a battle with the money people. It has been greed that my gp will do the jab. I hope this helps.
ponsmuir
Member

Re: Anyone else on Denosumab?

Beanbob - may I ask why you changed? I've been on Zometa a year now and agree the infusion is not ideal. But ok. I think it's cheaper than Denosumab which is why I have it.
beanbob
Member

Re: Anyone else on Denosumab?

Just checking in because this week I said hello to denosumab, goodbye to zometa. Found the injection a total breeze by comparison.
Aubergine
Member

Re: Anyone else on Denosumab?

Thank you so much all you ladies on this thread, have just read right through and it's really helpful.

I saw my oncologist last week and we were both concerned about how difficult it had been to get a vein for pamidronate.  I'd only had 3 lots but only 1 nurse had managed to find a working vein at all, we were down to a teeny one below my little finger.

Anyway, she said we should switch to denosumab so that's being arranged now.  My next infusion was due 28th January so should be plenty of time to sort it out.

I wondered though about where you're all having it done; I've seen reference to hospital and GP, but it's a bit different here.

The oncologist is at Southampton, 20 miles away, but I've been able to have the pamidronate at the local hospital which is lovely.  She was assuming I'd be able to have the denosumab there as well, so I'm hoping either there or at the GP.

The thought of no more hunt the vein is just wonderful!

 

.

sweetanimo
Member

Re: Anyone else on Denosumab?

'Twas me! Nearly three years now and it's been brilliant. Met on L2 now gone and shrinkage of other bone and nodes.
xx

Mema23
Member

Re: Anyone else on Denosumab?

Really sorry, I can't answer your question, but my sciatica type pain got so bad that I ended up being admitted as the oncologist thought it was possibly a compressed spine. Anyway after an MRI, it turns out to be a disc fragment problem and hopefully nothing to do with the denosumab. The nerve block injection I had 2 weeks ago is just starting to work, and I am due my denosumab injection on Monday. Hopefully this won't make any difference to the pain and so I can rule out the denosumab is making things worse.
Haxted
Member

Re: Anyone else on Denosumab?

Welll am in the week running up to my 5th injection and am again experiencing the sciatica-like discomfort and occasional numbness down my right leg that I experienced last month. So - whilst we are all different - I'm making the connection that perhaps Denosumab monthly doesn't control my bone pain as consistently as Bondronat daily......  Either that or the existence of progressing bone tumours are making themselves more known in the last 4 months....Or it could be osteoarthritis-based (had left hip replaced couple years back)... 

 

Question is - do I stick with it or revert back to the tedious process of Bondronat by mouth daily and maybe still find that progression is the cause of increased pain? Or "up" the painkilllers (am on Meloxicam, paracetamol and ocassional codeine (but hate the side effects of latter!)). Or wait and see what the Samarium radioactive treatment does which I'm also due to have next week? Pain is confusing me! Has anyone else given up on Denosumab?

Mema23
Member

Re: Anyone else on Denosumab?

Oh my goodness, you have just described what I am going through now! About a week ago my left hip and thigh area were painful and then since Tuesday I have had intense pain going down my thigh with numbness. Saw my oncologist on Wednesday, have had x rays, nothing broken, an ultrasound to rule out a dvt and now waiting for an MRI. With painkillers I get about and hour and a half respite in every three and the only way I am comfortable is flat on my back. How bizarre and how worrying, will phone my oncologist later, see what he has to say x
Haxted
Member

Re: Anyone else on Denosumab?

5 days before my 4th injection, I experienced increased lower back pain, deep pain in right thigh making it difficult to lift the leg and got pins and needles on one occasion down right leg (which I put down to maybe sitting too long on an uncushioned chair at a meeting) and changed sensation in right foot (which I dismisssd as probably to do with hand/foot symptoms from the Capecitabine). I was due for a bone scan anyway and so mentioned these symptoms - and was immediately confined to a bed for 7 hours and given steroids whilst bone scans and MRI done to eliminate spinal cord compression.....

 

Fortunately, whilst tests indicated partial loss of power in right leg and altered sensation in right foot, the MRI scan showed it was not spinal cord compression. The bone scan did show more progression of mets in right thigh which was thought may have caused the sciatica-type symptoms but I am due to start Samarium soon (internal radiotherapy) to have ago at them.anyway so no further treatment was proposed.

 

But - having surfed various sites (oh! oh!) for Denosumab side effects, I do find that sciatica-type symptoms are reported under the "less common" side effects so wonder if this episode was Denosumab-related. I also wonder if - being towards the end of the cycle, the effects of the last jab were simply wearing thin - something which I never experienced with a previous daily dose of Bondronat and so was unfamiliar with breakthrough bone pain. .

 

Two days later and I fell down the second half of our stairs......I have no idea what happened - pure coincidence - or related to loss of power/sensation? Anyway - testament to the efficacy of these bone-strengthening drugs, nothing broke and I just have some impressive bruises.....

.

Anyway - all conjecture and will probably never know if Denosumab - but hopefully offering reassurance for anyone else experiencing same sort of symptoms!       

Haxted
Member

Re: Anyone else on Denosumab?

I had to have my first two jabs in hospital but then when we asked if it could be done at the GP surgery, my consultant wrote to my GP to request transferring it's administration under something like "shared care" (probs wrong term). I received my third jab at GP at the same time as my monthly Zoaldex jab in the tum - much more convenient for me. I have had no specific blood tests pre-Denosumab either at hospital or GP - but to be fair - am also on Capecitibine chemo so bloods are being taken at GPs every three weeks anyway. 

 

 

 

 

rosiet
Member

Re: Anyone else on Denosumab?

Just had my 2nd Denusomab inj. Main side effects are headaches and fatigue. Am hoping I will be able to self administer eventually as am a nurse and such a simple injection! Would have to sort blood test though. I also work in GP practice so if more convenient for you to have there should not be difficult to sort as long as you get supply of injections from hospital as GP unlikely to want it to come out of practice prescribing budget! Politics involved!
Mema23
Member

Re: Anyone else on Denosumab?

Sorry I can't help you with any advice, I am having mine done at the hospital. I didn't know there was an option to get my GP to do it, but to be honest am happier to go to the hospital, but then it is only a very short drive from home.
myfanwy18
Member

Re: Anyone else on Denosumab?

Hi, I would just like to ask how easy it was arranging for your GP to give you the Denosumab injection.  When I was on Zometa the hospital arranged everything, I just sort of turned up for treatment.  However after seeing my GP a couple of weeks ago to discuss them giving me this new drug she said she didn't know how it was going to work.  She said I will need to have blood test and phone GP for results.  Luckily I asked for several blood forms during my last zometa treatment at the hospital but don't know what to do when they run out, not sure GP knows what I should be tested for. She said she would be away the week of my treatment but another Dr would give me the results.  I'm not feeling at all confident about this.  I feel it has all be left to me to sort out.  I would much rather the hospital administer the drug.  How easy is it going to be to speak to a GP on the phone for a start, as mine is away who do I speak to anyway!  If I can't get through do I just turn up and hope they've got Denosumab in?  Your advice would be much appreciated.

 

Myfanwy18

Haxted
Member

Re: Anyone else on Denosumab?

Just had my third Denosumab - am having them in the back of my upper arm as having Zoladex in the tummy at same time so wanted them physically distant. No discernable side effects at all (was previously on daily Bondronat - what a relief from THAT regime!). Plagued by fatigue but difficult to extrapolate what the actual cause is given 4.5 years of treaments and currently on cycle 16 of Capecitabine chemo..... Not going try and work it out but use my remainng energy to get on! 

 

Anyone having it in the thigh!?

 

 

nicky08
Community Champion

Re: Anyone else on Denosumab?

Hi, its interesting what some of you are saying about getting aches and pains.

I have the denosumab injection in my tummy blubberSmiley Happy and haven't had any problems.  I do feel a bit achey where I know the mets are in my spine, just before the injection is due, but so far no problems at all after the injection has been given.  Hoping I haven't jinxed myself now!

Nicky x

Mema23
Member

Re: Anyone else on Denosumab?

Hi there, I had my first denosumab yesterday after switching from zometa (?). I had it in my upper arm, not really painful going in and just a small bruise this morning and so far no side effects at all. Fingers crossed!
Marion
swanie
Member

Re: Anyone else on Denosumab?

Hi Folks

Back ache does seem to be a bit of and issue with Denosumab however I had a tip from Nanniespikey (Liz) - she tried having the injection in her upper arm, this hurt a bit however she did not suffer from the same degree of back ache.  i am due to have my jab on Thursday so think I may give this a go - a few seconds of discomfort to avoid several days of back and leg ache may be worth it. I will report back.

Perhaps we can set up a mini-trial and try this alternative injection site and see how goes. It could be helpful for others in the future.

 

Al l the best for now - Jacqui

Angelfalls
Member

Re: Anyone else on Denosumab?

Thanks for your reply, Liz. It was really helpful and, as always, such a relief to know that someone else has gone through something similar. Are you on E/E as well, by any chance? Pesky mouth problems!

I went to my dentist when it first flared up and he gave me a course of antibiotics which seemed to do the trick, but now the same problem is back less than two weeks later, plus it's also flared up on the other side. *Sigh* I'll give him a call again tomorrow and see what he says. Think I'll have a chat with one of the BC nurses, too.

Hope your little crater clears up, but good news that you can still get your injections. I'll get on the case tomorrow! Thanks again. X

NannieSpiky
Member

Re: Anyone else on Denosumab?

Hi Angelfalls
I was also refused my denosumab inj a couple of months ago due to a mouth ulcer in the roof of my mouth which I've had since May along with a sensitive tooth and jaw. I immediately phoned my dentist and explained the situation to him and he gave me an emergency appt for the next day. Had two x-rays done which showed no abscess,holes or any other problems. Dentist unsure if little crater in my mouth is ulcer but without a biopsy being done cannot give me any answers but will live with this little problem rather than have a biopsy. However, because I was able to show copies of the x-rays to my onc and state that there was no problem, she was happy to let me continue with the injections.
Maybe a visit to the dentist may help you and give you the answers you need to give your onc for your injections to continue. Good luck.
Liz x

Angelfalls
Member

Re: Anyone else on Denosumab?

Been having trouble with my gums over the last couple of weeks - an infection from my weird wisdom teeth, biting my cheeks, grinding my teeth viciously in my sleep and sore bottom jaw as a result. So when I went for my four-weekly jab, they refused it and said they wanted me to get my gums back in order before I have my next injection, because of the risk of ONJ. Just wondering if anyone else has had a similar experience and if so, do you have any advice, please? Thank you!

nicky08
Community Champion

Re: Anyone else on Denosumab?

Hi rosiet, welcome to the secondary BC part of the forum. There is a very good and supportive thread for bone mets ladies on here called, you guessed it, Bone Mets, please join in! There are many of us secondary ladies on there who can offer support and experiences which has helped all of us over the years, well worth a look and one of the most active threads on here for bone mets. The forum has had a recent update and we now don't have a recent threads section so some posts get missed, and worryingly I see a lot of secondary threads are not being kept active, so I do hope you persevere if you don't get any replies, I'm sure one of us regulars will reply. Good luck with your treatment, are you having anything else other than Denosumab? I've been on this injection since Feb of this year as my bone mets had progressed and its by far the quickest and less side effective bone strengthening treatment I've had over the 5 years since I've had bone mets.
Nicky x

rosiet
Member

Re: Anyone else on Denosumab?

First time on forum and had first dose denusomab yesterday. So far so good! Count myself very lucky as had stable bone mets in sternum for 14yrs (breast primary in 1991!) and just been on exemestane, then scan last year showed mets now in ribs, leg and pelvis but no real problems. Apart from feeling tired (but am still working) all ok. Was started on IV pamidronate but switched as fed up with time required and finding a vein! Good to be part of supportive forum.