Anyone having Denosumab (Xgeva)?

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Hi everyone

I have stage 4 breast cancer,2 tumours (stage 2 and 3) in one breast and nodularity in other breast, suggesting cancer, secondaries in several chest/axillary nodes, ribs,spine and lungs.

I am presently on Tamoxifen and had first dose of Zoladex 3 weeks ago. No surgery/chemo/rad.

I am expected to start Denosumab too, but have been putting it off as I am really worried about the side effects.

I am struggling badly with fatigue and weak muscles, since 2 weeks after I had the Zoladex, unable to get up out of bed in the mornings and usually unable to eat anything before 11am (think this may be Tamoxifen, but made worse with Zoladex). If I do eat, I feel like I am going to vomit and end up retching.

My biggest concern is starting Denosumab, which can cause musculoskeletal pains, fatigue, diarrhoea, breathlessness, risk of serious infections and osteonecrosis (breakdown of bone in jaw).

My QoL is not good at the moment due to the side effects and not even sure it is working, as tumour has got slightly bigger and nodes above breast and in axilla are sore again. (They reduced in size the first month on Tamoxifen)

I cannot seem to find anything on the forums from people on Denosumab and how they have coped with any side effects.

The breast nurse just says she knows loads of people on it and they are fine! She is not having to live with the side effects, I am!  I am wondering if it is all worth it. I have gone from doing up to 10 hour days in work despite having Chronic Fatigue Syndrome, to feeling rubbish after being up for a couple of hours and my lips/face going pale (which worries my family).

Sorry this is long, but anybody who could share their experience with me, I would really appreciate it.

Thank you.

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I take Denosumab as do many ladies with bone mets! I also have lung and liver mets and have just finished 12 weeks of chemo and now taking tamoxifen as well. I have had no SE from the Denosumab. The tamoxifen can cause aches and pains but I have been drinking tonic water which I read can help and it seems to be doing the trick.
Glo xx

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I’m also on Denosumab, and have been for the last two years since diagnosis with bone mets. I can’t say that I have had any side effects that I attribute to Denosumab (had terrible SEs, similar to those you describe, on Tamoxifen and other hormonal treatments). I work practically full time and am out of the house 12 hours per day.  

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Sorry to hear you are suffering at the moment-with lots of medication it is difficult to see what causes any particular side effect.
I have been on Denosumab for nearly 3 years and find it very tolerable with no side effects. I also take exemestane, zoladex and herceptin for bone and liver mets. Denosumab had just been launched when I started taking it and was billed as a ‘wonder’ drug replacement for zometa. There is a thread on here somewhere about it and I seem to remember most of us on it tolerate it pretty well-of course everyone is so different and you need to find something that works for you.
All the best with your treatment.
Love Helen

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I’ve been on denosumab for 2 years I’ve had no side effects, and feel ok on it,  the worst effects I get are from tamoxifen 

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Hi, I have been on Denosunub for only 4 months for bone mets, and apart from some transient aches and pains I seem to tolerating it well. I do get breathless but this is probably due to the mets in my pleura and lung.

I hope this helps and reassures you.

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Dear Magime

 

I have been on Denosumab 3 years now I find it so easy just a quick injection usually in the tummy. I have never had any trouble with it and I have M.S so my muscles play up anyway but even that does not seem to have been too bad.

 

Hope this helps best wishes xxx

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I had my first one Tuesday and was told I might get achy but didnt notice. Simple injection. Hope it does what it says on the tin !!!

Carolyn x

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Hi,

 

I have been on Denosumab since last November.  I don’t think I have had any side effects from it, but I am terrified of getting problems with my jaw.  I have got pretty good teeth so hope I am not at any extra risk.  I suppose the benefits must be more than the problems, otherwise it wouldn’t be prescribed.  I was diagnosed with secondaries in my peritoneum last March, and the bone mets became apparent about October but my consultant said they had probably been there before and the chemo has probably made them visible.  I’m not clear how.  My primary BC was in 1995 so it was a big shock to find it had been lurking inside me for 20 years.  Obviously I am not young and I really feel for all the poor girls with little children who have to contend with this nasty, sneaky disease.

 

I hope you tolerate the Denosumab well.

 

Ruth

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Hiya Ruth.

I was dx with primary in 2004 and did the op, chemo and rads etc. I hit the ten year landmark and felt that I had beat it all - retired and moved house and then October 2015 after a year of hip pain and being dx with arthritus and trapped nerves - was dx with bone mets  !! 

I too worry about this jaw thing with the denosumab as I have terrible teeth after the chemo in 2004 and had to have two teeth taken out before I could start my injections. 

I also feel for the younger ladies going through the treatments if they have young children as its a lot to juggle and cope with as nearly all cancer treatments have horrendous side effects of some sort !!

Hopefully as time goes on …better treatments will be found with less side effects .

 

Carolyn xxxxxxxxx

 

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Dear Carolyn and Ruth

Did you see a dentist before you started Denosumab? I had ductal breast cancer in 1996 and had dx mestatic breast cancer Jan 2013 with chest wall tumour another in the breast and tumour in the sacrum (spine) now ribs left pelvis femur tibia right femur and ribs. I have been on Denosumab 3 years I have regular check ups with the dentist after going through chemo in 96 because I had a tooth that I thought was turning bad but it was sensitive. Again on tablet form of chemo it started up again and again on this new chemo my tooth is letting me know it’s there sensitive tooth paste works. 

If you have tooth trouble you will have to take a rest from Denosumab maybe you could ask a dentist if your teeth are ok but do tell them you are on the bone strenghening drug Denosumab.

Anyway lots and lots good luck to you both xxx

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Hiya Marirose - yes I had a checkup and two teeth taken out back in November so fingers crossed I shall b ok. 

You too have the bone mets in femur, pelvis etc and although Im sure all bone mets are a nightmare where they are - I feel that these have taken away so much of my mobility and quality of life as  I cannot drive which I find  a pain and can only walk  small distances. I have a wheelchair in garage but do not want to rely on it yet and I have the offer of a electric scooter but am hoping to be able to walk better when the weather gets better as Im so nervous of slipping on the wet pavements etc. 

My oncologist  always asks what pain relief I take and the answer is always the same - a hot water bottle at night and an extra pillow!!  I am trying to keep off pain relief at this early stage as whatever I take - there is always a side effect !! even with paracetamol. 

Reading your posts - you certainly have a wealth of knowledge with treatments you have been through !!!

 

Carolyn xxxxxxxxx

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Hi, I’ve been on Denosumab for 12 months and no side effects. Diagnosed with BC 2005, then lets to spine 2012, then lets to liver and lung 2013, and now back in liver. Denosumab has improved mets to spine ?

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I’m having my 2nd denosumab injection on Tuesday on the condition my blood test is ok. Don’t think I got that much side effects from the first one so hopefully it will go ahead.
I’ve been on letrozole over three months and the side effects have settled too apart from the hair loss (posted on separate forum about that)
Feeling quite unsettled about it so hopefully that will pass too.
Carolyn xxx

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Hi Carolyn

I hope all goes well with your injection on Tuesday. It’s definitely helped me. I have my next one 1st March.

Take care xxx

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I know this is an old thread but I’ve been struck by asides people have made about pain.  I’ve got mets in lungs liver, pelvis, ribs, spine diagnosed along with original in 2013.  I’ve been on denusomab, cappecitabine and vinorelbine since November after kadcyla failed to stop the growth.  I’ve been in a lot of pain in my back and down my leg and have been using an electric wheelchair when out and crutches at home.  I was referred to my local hospice last October and the doctor there has sorted out my pain relief.  I don’t like morphine as it makes me woolly headed, so I have a fentanyl slow release parch, which is morphine, paracetamol, naproxen and pregabilin.  We’ve played around with combinations of these drugs and for the last two months I’ve been pain free unless I’m tired, then I lie down and sleep for two hours and the pain goes, or I take oxycodone if I can’t lie down anywhere.

my point is that I needed to see an expert in this type of pain relief to get the balance right.  My oncologist wasn’t helpful in this area and my gp didn’t have the time or the expertise.  I would encourage people with pain to see a doctor at their local hospice.

jan 

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Hi Jan,
I’m on 10mg slow release morphine twice a day and 10mg ordinary morphine when required. I can be pain free for days at a time but usually I have mild to moderate pain. I would love to be pain free but, to tell you the truth, I’m terrified about going anywhere near our local hospice. I know it has an excellent reputation but I just can’t make myself go. I know it’s stupid and irrational. However, your story makes me aware I am missing out on valuable help so I think I may look into the hospice nurses doing a home visit as I know they can do that in my area. lxxx

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As well as seeing the doctor there they offered me dat therapy which I attended and found it helpful. They group people on different days roughly according to age do on the day I went there was a woman of 28 with lymphoma going up in age to around 60. Obviously all hospices are different but we were given a free lunch offered various massages, reflexology etc, a nurse to talk to if we wanted to, a craft room or just chatting. I found it helpful to talk to other people and we laughed a lot.
See what they offer and give it a try.
My doctor there also helped me with end of life planning, which may be a long time off yet, but when it comes I’ll be prepared. Everyone’s going to die sometime!
Please try, you may find it really helpful. I’m seeing my doctor there this morning and I know she’ll give me at least half an hour which is great.
This might be a bit garbled as I’m on my phone but hope it’s helpful.
Jan

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I know exactly where you are coming from, Waffles! I nearly had a meltdown when the last nurse practitioner talked about hospices a couple of weeks ago! Like you, I feel fit and reasonably active still, I would fall into a depression if I had to think about end of life care now.

They sound wonderful places and I know that they have the experts for pain relief too, so it’s a silly attitude…I think that the psychological aspects of dealing with this illness are very important too though. Hope you make the right decision for you xx

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Hi all on the subject of hospice daycare…iv just finished docetaxol which was my third chemo…im on examastene …at moment…i look really well still do shopping housework cooking.etc…people wdnt know I wasn’t well…i am in my third Tuesday at daycare.it is invaluable the Dr spends loads of time and explains what my oncologist doesn’t have time to…i dont intend to die yet. But it really us good they are going to do my monthly blood tests for me they also give infusions etc…but on the other side the people are just the people like you meet in chemo unit chatty.fun.and all in similar boat.but not depressing at all…their is no inpatients they are un the next door building…so its not scary at all .dont be afraid to try it .I’m going for twelve weeks…sharonxx