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Bone mets - please join in

Member

Re: Bone mets - please join in

Morning all

I am new to this..  was told yesterday that I have some spots on my liver and on my spine and pelvis.  I hurt my leg  back in Oct which they said was a muscle strain, I then fell 3 times in the next few months and the pain increased.  They suspected a fracture of pelvis which turns out was true but only because a spot of cancer was on the bone and had weakened it. I was on tamoxifen although was having a few weeks off.

 

I only finished Herceptin last Feb (I am triple positive) after single mastectomy , chemo FECT and radio and petumazab.  They think perhaps it was there all time but so small no one could see it on scans but since treatment ended its started to grow. I started to feel a little bloated on and off the week before xmas but have had IBS in past so just presumed it was an attack.

 

Not sure what to expect - v scared .  any positive experiences out there please .

thanks

x

Member

Re: Bone mets - please join in

My hospital decided to try getting patients to do their own denosumab injections at home, it was to be delivered to my home. I was not keen and asked if my GP practice could do it but was told they were not licensed to do it. So much for care in the community! Have not heard any more. Usually it doesn't take very long and when my hospital appointments were quite spaced out it was quite reassuring to see a nurse regularly. I am going onto 6 weekly injections now to coincide with capecitabine appointments.. Had a lot of bone pain after last injection so am pleased they will be less frequent.

 

 

 

 

 

 

 

 

 

 

 

 

 

pea
Member

Re: Bone mets - please join in

Thanks so much Nicky. Your reply has been really helpful and reassuring. I will keep you updated on how I get on. 😀 Phoebe xx
Community Champion

Re: Bone mets - please join in

Hi pea

Sorry you have to join us but you have definitely come to the right place for support and to ask questions.

I have been an active member of the secondary forum for over 10years now and I must say in all that time I’ve not heard of anyone having their sternum removed. There have been other surgical bone procedures such as hip replacements but not the whole sternum. Obviously there must be someone out there who has had it done but no-one has posted on the forum as far as I can remember. Therefore you may not get any advice as we tend to give it if we have experienced the same.

I would get a second opinion, you’ve got nothing to lose and maybe find out if there’s a specialist surgeon who has done this before. I recently had liver surgery and was very grateful for the fact that my surgeon (at my local hosptial) is one of the leading abdominal cancer surgeons in the county. It gave me great faith in his abilities and trusted him with his opinion about my particular case and recovery times etc as he has done the same surgery many times.

In terms of survival rates whether you have surgery or not it is of course impossible to answer. Having said that I have had no surgery or radiotherapy to my bone mets in the time I’ve had them and although they are now more wide spread than they were they have never caused me any issues or pain - and I’m still here!

Sorry I can’t be of more help, maybe someone else can. Good luck though with your decision and let us know how you get on.

Nicky xx

pea
Member

Re: Bone mets - please join in

Hi All - I'm new to this and would like to pick the brains of all of you amazing ladies.

I was dx with BC in April 2018 and two weeks later an MRI scan and PET CT scan showed I had a solitary secondary bone met lesion in my sternum. I had chemo (FEC-T) followed by lumpectomy (x2) to remove primary. I am currently on anastrazole and zoladex (goserelin).

I have been told by the relevant surgeons that I am a good candidate for sternum removal (and rebuilding) but my oncologist is not keen. I still have to have RT and my oncologist said palbociclib is the next stage of treatment. I am at a cross-roads because the option to have the surgery is purely down to me and as I am a rare case there is no literature to support whether removal slows down progression of the disease. I am 47 and want to give myself the best shot but it's a massive surgery and will take months to recover from.

I'm going to ask for a second opinion on this from other oncologists.

Has anyone else been in this situation? I would love to hear from you. Yikes! What do I do?

xxx

 

 

 

 

Member

Re: Bone mets - please join in

Riversidedawn, my hospital recently changed to giving Denosumab 3 monthly, saying it stays active in the body for such a long time, the Maxillo Facial team I see also agree with this, obviously they are concerned re jaw issues. Both teams say it stays in the body beyond 3 months and my dentist says he’d be surprised if it didn’t stay way beyond that! I was told later results agree with this and extending the time between doses reduces the risks of onj. When my hospital protocol was monthly my Oncologist always said not to worry if I went 6 weekly or even missed a dose, so assume they have always known how it stays in our systems.

Could you ask to adjust the frequency to fit in with your other visits? Kate x

Community Champion

Re: Bone mets - please join in

Wow, Riversidedawn, that is a long time for just a quick injection. As the other ladies have said you could ask if your GP will administer it but unless the nurses are trained I don’t think they can. I have had Denosumab for nearly 6 years now and have had it at varying intervals depending on the other treatment I’m on. At present I have it 4 weekly along with my fulvestrant but have had it 6 weekly. If I’m continuing on fulvestrant (after I find out my recent scan results) I am going to ask if it can be 8 weekly. Each time I go for my injections and port a cath ‘flush’ I’m in and out within 30 mins give or take 10 mins, waiting around for 3 hours is awful so I don’t blame you trying to find out how you can get it done more quickly. I don’t think oncologists, or chemo nurses, understand that once we have secondary BC we are spending too much of our valuable time in a hospital so want to get out ASAP!

Nicky x 

Member

Re: Bone mets - please join in

Next Christmas it WILL be better!! Jayrand56!
Member

Re: Bone mets - please join in

Next Christmas it WILL be better!!
Member

Re: Bone mets - please join in

Yes I wish everyone here a happy new year with good results from whatever scans/ tests and good responses to whatever treatment. May this be a year of success for all.
Member

Re: Bone mets - please join in

Correction! Been on Denosumab for 6 years not 5!
Member

Re: Bone mets - please join in

Hi Riversidedawn
I have been on Denosumab for 5 years, it was licensed in late 2012 & I was put on it when diagnosed Dec 2012 so GP saying it's a new drug isn't quite true. GPs don't tend to administer it because it costs too much, I was told £150+ per injection back in 2012!! Having said that, my local hospice will give it & I know someone on this forum who self administers at home. My chemo unit & onc are very flexible as to when I get Denosumab-they tend to tie it in with whichever chemo I happen to be on so I have had 4 weekly, 6 weekly , 8 & 12 weekly. All the best with your treatment.
Helen x
Member

Re: Bone mets - please join in

Lovely good evening,
I wish you all clean scans, good fight, stay strong and positive in the upcoming 2019.
Hugs🎉🎉🎉
Member

Re: Bone mets - please join in

Just joining in for a bit of support. I was admitted onto the oncology ward on Boxing Day with a chest infection; I already had breathlessness which had been exacerbated by the Paclitaxel so not good!
I’m having IV antibiotics and steroids and feeling much better, in fact there is some suggestion from the CT that there has been an underlying infection for a while.
Not sure if I will be allowed home today as there is talk of a chest drain, despite my consultant saying it wasn’t necessary last time I saw her.
Feeling a bit fed up, and trying to convince myself that next Christmas will be better..
Member

Re: Bone mets - please join in

Hi. I am on denosumab. I get my injection every four weeks at hospital when I am picking up my palbociclib. I can be in and out in 20 minutes but sometimes there is a glitch with the prescription or no room available. I have asked if I could have it done at the GP but was told as it was a relatively new drug it was to be administered at the hospital.  I don't always see my onc when I am in. If my bloods are OK I get a phone call the evening before to ask how I am doing. I have the option to see him if I want to but much as he is lovely and very approachable I prefer not. I find it is the best approach for me at the moment. 

Member

Re: Bone mets - please join in

Hi

I have Denosumab every 4 weeks at my dr's surgery. You should ring them and see if there is a nurse trained to give the injection. 

 

Vicky

Member

Re: Bone mets - please join in

I am on Ibrance and Zometa and Anastrosole. I have Zometa every four weeks and also have to see the oncologist every four weeks to get the Ibrance. I’m one a low dose and one week on one week off as my white cell counts are low. Often the appointments don’t work out to be on the same day so I have to go consequtive weeks. It is time consuming but the hospital is near my work so it’s okay. I haven’t heard of anyone having it at home but this is the right place to ask. Could you try and have both on the same day? I sometimes can which is good. Best wishes Anne
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Community Champion

Re: Bone mets - please join in

Hi is anyone on denosumab? I have to see onc every four weeks to pick up ibrance (palbociclib) and also return every 6 weeks for denosumab. Never get out in anything under 3 hours even when it's just a quick injection.
My GP won't fund ibrance so that's fair enough but I wondered if GPs will do denosumab or if anyone is trusted to do it at home? Really don't want fortnightly hospital trips.
Community Champion

Re: Bone mets - please join in

Merry Christmas! Relax and enjoy the festivities with your family and friends! FF

Community Champion

Re: Bone mets - please join in

A Happy Christmas from me as well 🎄🎅🏻Wishing you a lovely time with your family and friends.

Nicky xx