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Decision to make about Denosumab (Xgeva®)

22 May 2019 15:12

My wife has secondary breast cancer in her liver lymphatic system and bones, she is not taking any chemo, had enough of that the first time round. She is taking Letrozol, which after only a few months has shrunk her liver tumours, none at the surface now, although she had multiple tumours before letrozol. She is very religious and believes strongly in the power of prayer and love from friends and family. She is obviously suffering from all the usual symptoms that are associated with cancer, nausea, tiredness, absolute fatigue, stomachs problems, bone pains, has several sleeps during the day...etc.. She is also wearing an aspen vista cervical collar, due to a neck fracture, she absolutely hates the collar and at times wants to tear iit off, been having lots of ‘fun’ trying to get the correct adjustment, uncomfortable itchy foam pads skin sores etc.....life’s just a bunch of fun......

she was offered denosumab several months ago, but declined for fear of the jaw bone loss side effect, which now seems to be rare.....there still exists the danger of worse side effects from starting this drug then discontinuing it.....would like to hear of anyone else with experiences of this...

my wife has just joined our local hospice, which although very wearing for her (  for a day or two after her visit ) it does give her an opportunity to discuss health issues and have a social outlet.

Decision to make about Denosumab (Xgeva®)

23 May 2019 16:54 in response to Reddwarf4ever

Hi reddwarf4ever, 

I'm sorry to hear about your wife. My dad has been taking Xgeva for about two years now I blelieve, and he hasn't had any terrible side effects. He has been doing really well on it. I'm not sure how often he takes it. I have also heard the jaw bone loss is very rare, as that was something we were worried about before my dad starting taking the Xgeva. 

I hope this has helped somewhat. If you have other questions, feel free to ask. I'm not as involved with his medication as I was a few years ago when he was first diagnosed, but if there's anything I can remember I'll add it!

Decision to make about Denosumab (Xgeva®)

23 May 2019 17:25 in response to GiftThePresent

Hello

thanks for the reply, my wife will have a dental checkup Friday , hopefully will get a full jaw X-ray done, just to confirm there are no issues we are not aware of. She has a full body MRI next Wednesday to see if the Letrozol is helping with the bone cancer as it has done with her liver.

as you say the jaw bone issue is a rare side effect and the other symptoms she is living with day to day anyway.......so may go this  course, especially if improves her life span. The denusonab is injected 4 weekly ( exactly ) with regular blood tests especially before each dose.

she is at her wits end with the aspen vista cervical collar, have tried everything to try and soften the foam pads, to no avail. I have yet again emailed the manufacturer, as the issue is mainly the cut edge causing chaffing of her neck, the first pads issued 3 months ago did not exhibit this problem. Maybe they are being cut differently, with different blades causing the edge to be rougher, as with all things medical it often feels you have to drag solutions from healthcare providers and equipment manufacturers....

its a long shot, but if the denusonab eally strengthens her bones, then maybe her neck fracture will heal sufficiently not to need the collar, or at least not 24/7

would live to hear from anyone else using this collar...

best wishes

Decision to make about Denosumab (Xgeva®)

9 Jun 2019 05:05 in response to Reddwarf4ever

Hi. I was on denosumab for 18 months due to a benign spinal tumour. The doctors stopped the drug and operated on my spine as the drug caused a thigh fracture and pain in my legs. 5 years on and 2 operations to have metal rods inserted into my femurs I am still in constant pain with my legs. Everyone's side effects are different but mine are life changing. 

Decision to make about Denosumab (Xgeva®)

9 Jun 2019 11:06 in response to Sunshine23

hello

many thanks for the reply, so sorry to hear of your side effects. My Wife has decided against this drug...the Consultamt said the benefits may only be slight, but the side effects can be serious, she is suffering enough side effects from the morphine patches...and letrozol....with the added problem of the discomfort and neck soreness from the cervical collar she has to wear 24/7.....

a difficult time......one day there Will be a cure for all. Anvers.....one day.....

take care

Decision to make about Denosumab (Xgeva®)

9 Jun 2019 19:44 in response to Reddwarf4ever

Hi

My Husband has had Denosumab injections monthly for the last 7 months for secondary in his spine. He has had no noticable side affects from the drug and i really think it has helped him stay so mobile and kept his spine strong. He has an extensive bone mets and a large collaspe T12.

He decided to chance the jaw bone side effect as without the Denosumab he could be in a wheelchair by now.

I wish you both luck and hope it works for you too

Decision to make about Denosumab (Xgeva®)

9 Jun 2019 19:47 in response to Reddwarf4ever

Sorry i saw your post earlier and only got around to posting tonight and didnt see you had posted about your wife's decision.

Decision to make about Denosumab (Xgeva®)

9 Jun 2019 23:06 in response to Missaloy

thanks for the replies, My Wife reallt can’t handle any more side effects, e.g. more nausea, she is only just coping now, it is a gamble with every drug we take......the Letrozol is having a positive effect on the liver  tumours, will know this week if it’s also attacking the bone tumours...

 

keith

Decision to make about Denosumab (Xgeva®)

10 Jun 2019 00:25 in response to Reddwarf4ever

wishing you both all the very best with the results X