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Re: Bone mets - please join in

Please, i have one more question. Do you know, why meta was not seen on normal lung RTG, but PET/CT show something on lungs?
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Re: Bone mets - please join in

Thank you soooo much bonareinsis!!!!! I tried look internet, but i didnt manage to find so great picture.
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Re: Bone mets - please join in

There are two sciatic nerves, one on each side which run down into each leg

 

sciatica.jpg

Community Champion
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Re: Bone mets - please join in

Hi

Just another thought, late at night for me as I usually read the forum earlier in the day! One of the nurses who have me my injection the other month mentioned the sciatic nerve and how she dreads hitting it when she gives the injection so makes sure she gives it quite high up. Maybe your pain is related to this? I seem to think the sciatic nerve is on the right hand side but don’t actually know for certain.

Nicky x

 

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Re: Bone mets - please join in

Thank you Nicki and Marmeid, we try it, sides effects is also muscle pain, but funny is that is only on one side(injection both sides) and roughly week after injection for 3 days. I def check it up with onc and let you know.
Thank you all for replais, mean much and help much🍀🍀🍀
Member
Posts: 91
Registered: ‎16-01-2015

Re: Bone mets - please join in

Hi

The injection is put into the muscle at the top part of your bottom and when I have the right side done I feel nothing but when she injects the left side It always hurts a little. I would mention it to your nurse. It may be that you need to massage the area for a while after the injection. Maybe a hot water bottle on the area the night yiu have the treatment? We are all different, I hope you find a solution.

xx

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Re: Bone mets - please join in

As us like you go fitness and you pull your muscles. I will check it up with onc , but it is only one week after injections and it last cca 3 days and only on right side. Keft side is goid after injection. The pain always sort out 1 tablet of common painkillers, so hope thats not something bad, anyway i am curious
Community Champion
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Re: Bone mets - please join in

Hi Majck 

Ive been having faslodex injections for nearly a year now and don’t get any pain from them. I do get localised itching and redness where the injection goes under the skin but nothing I could say was ‘pain’. As mermaids has said, where is the pain? It could be listed in the side effects which you can look up online (as you might not have been given an info sheet about them)

Alternatively speak with your onc team who may be able to help?

Nicky x

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Re: Bone mets - please join in

Hello Majick,

I haven’t experienced any pain from Faslodex, where are you getting the pain? X

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Re: Bone mets - please join in

Nice evening all,
May i ask someone please, Faslodex, 1 dose, 2 dose two weeks later and now monthly. Each time it was injected 250ml in bottom, and pain came always 5.6.7th day afterwods. And ONLY on right side, left is good. Any experience?
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Registered: ‎14-03-2018

Re: Bone mets - please join in

I am sorry that you have to join us! There is a lot of advice and support on offer here. I was diagnosed with bone mets in April at the same time as my breast cancer diagnosis. I was very shocked and cried a lot. I'm on Ibrance Anastrozole and Zometa. Scans have been encouraging and I am working full time and feeling fine. It's not easy but I have got used to the regime and I manage not to think about it all the time. Best wishes 

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Registered: ‎09-01-2019

Re: Bone mets - please join in

[ Edited ]

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

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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
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Registered: ‎14-12-2018

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
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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

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pea
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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
Posts: 321
Registered: ‎30-09-2017

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
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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 

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Re: Bone mets - please join in

Next Christmas it WILL be better!! Jayrand56!
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Re: Bone mets - please join in

Next Christmas it WILL be better!!