Bone mets - please join in

[Mermaid007]

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

[Magick]

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

[nicky08]

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

[Mermaid007]

Hello Majick,

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

[Magick]

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?

[Anne30]

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 

[CAT123]

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

[bonariensis]

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]

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

[nicky08]

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]

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

[Kate21]

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

[nicky08]

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 

[Annary]

Next Christmas it WILL be better!! Jayrand56!

[Annary]

Next Christmas it WILL be better!!

[Annary]

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.

[helen44]

Correction! Been on Denosumab for 6 years not 5!

[helen44]

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

[Magick]

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

[Jayrand56]

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..

[Benten]

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. 

[Vicky77]

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

[Anne30]

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

[riversidedawn]

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.

[funnyface]

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

[nicky08]

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

Nicky xx

[Anne30]

Happy Christmas to everyone and thank you for all the support and encouragement. Here’s to strength and peace in 2019 x

[Hayeswen]

Christmas wishes and good luck to all . Here’s to a great 2019xxxx

Wendy x

[ramade]

Hello, i just wanted to wish you all a happy Christmas and positive scan results for the new year

Big hugs to all

Ramade

[Jayrand56]

Thank you for your replies. I hit a wall yesterday when the onc told me I may not be able to tolerate the Paclitaxel; overtired, oversthinking and just plain fed up!
Today I have pulled up my Big Girl Pants and decided to look forward to seeing my gorgeous pocket rocket grandson tomorrow!
In the meantime I am working to manage my breathing and bought a v shaped pillow to help at night. Part of the problem is that my husband works away Mon to Fri, so the nights alone can be scary. He is now home until New Year. I understand now that there are alternative chemos I can try if this isn’t possible. Thank you all, you are a lifeline.

[nicky08]

Hi Jayrand56

Some people have an allergic reaction to one type of chemo but not necessarily another. There is another taxane, docetaxel, which works in a similar way but doesn’t necessarily mean you would react to it in such a bad way. There’s also Eribulin which is completely different and is well tolerated plus of course Capecitabine. Some of these other chemos can’t be given until after another one has been tried. I’m sure there is one (there are more than these I’ve mentioned) that will work effectively without the distressing side effects.

Good luck

Nicky xx

[funnyface]

Jayrand56, About 4 1/2 years ago I had been on gemcitibine for about 10 months. Hubby and I HD gone away camping for the weekend. I was fine Friday when we left. I woke up Saturday morning extremely short of breath. I couldn't even walk a few feet to the outhouse. I was out of breath even putting socks on. We were due to go home Sunday. We packed up to go home and when I went to hug our friends bye we were all crying. Everyone thought I had taken a turn for the worse and that this was it, including me! I had never been that SOB with my lung mets. Monday morning I called my oncologist and he had me come in right away. They scanned me and there was no change in my cancer. I had pneumonitis. Which is inflammation all the lobes of the lungs. He took me off gemcitibine and all treatments for a month. I had to go on O2. In about 3 weeks I was fine, but my run with gemcitibine was over. FF

[Jayrand56]

I’ve just started weekly a Paclitaxol and also will have bone strengthening injections monthly

[samsmom]

Hi. What medication are you on to stabilize your lung tumors?

[Jayrand56]

I don’t know if this is the right thread to ask, but does anyone else have experience of a bad reaction to Paclitaxol? I have only had 2 weekly doses, but each time my breathlessness has worsened. Onc thinks it may be the chemo side effect.
I am currently house bound as any exertion sets me off. It is possible that they will bring me in to the ward this weekend to scan for possible clots.
If I have to stop the Paclitaxol, I’m worried that there won’t be anything else for me. I have lungs mets and bone mets on my sternum

[bonariensis]

Ahoj Magick. I have a sage bush in my garden. Will try the tea.

Bon x

[Magick]

I need to deeply apologise, my message was for Silverlining, not Bonareis.
Bonareus, so happy, you do well and all is stable! Thank you, that you have been here for us with all your support. May i kindly ask you, what you having for problems, insurence in UK ( i asume you are from Uk ) ??

[Magick]

Silverlining,
Even we ( mum and I ) are from czech republic, inbetween scans is not a really support. Mum has got me, who goes with her, does silly things make her smile and study internet to have at least some answers for her questions....bit sad, that the system as soon as they have not tax paid from you, they somehow quickly forget that you was here for the system for many years...make ne angry, system sucks😤😤😡🤯

[Magick]

Bonareis, I am so sorry about your pain, i have read that is good to drink sage tee and also have it as a bath.i wish that pain goes away.Exemestane we have no experience, but it should be also gut stuff if that work for almost 3 years!
🐢🍀🐢🍀🐢🍀

[silverlining]

thats exactly what i meant...x

[Magick]

Silverlining,
For us it was only something little elevation of tumor markers. If doctor dont watch them, mum would have metas without knowing till she receive pain. So happy, that doctor check up because that markers!!! Doctor found it out before pain or other clinical issues come out.

[silverlining]

Just a lil' question...my onco. never uses tumour markers as he does not believe in them.....may i please have your feedback on this one?

How many of you feel supported in between scans?? I believe there is work in parliament on raising the care of 'all' secondary cancer patients.......not very festive...ooopsie..xx

[bonariensis]

Hi Magick and Butterfly

Welcome to the forum. I had primary bc in 2009 and was treated with radiotherapy and tamoxifen. 6 years later mets in my pelvis and skull were discovered during an investigation for something different. I was treated with exemestane which worked for 2 1/2 years but I'm due to start capecitabine after Christmas. I had some difficulty persuading my consultant that ex wasn't working any more. Lots of women have the same problem. We know our own bodies. 

You mums are lucky to have your support

Bon xx

[Magick]

Butterfly,
Maybe i wrote it confusing, she dx brest cancer T3N1MO ( chemo, operation, radiation ) 5 years clean on Alozex ( same like Tamoxifen, but for postmenopausal ) than tumor markers little elevate, doctor start to search, meta bones found 2 weeks ago, already put away from Alozex and instead Faslodex+zoledronat acid. She have also suspicious ( after PET/CT) one lymf in lungs so they make biopsy on that to see if from the primary it hasnt change ER,PR,HER2 or that is not another cancer f.e lungs, which has already spread.
My mum was in bit of shock, but help her when we talk about it that i have some answers, and she had a big trust in her onco doctor ( she is great ). Its very hard to combine, mum, baby, problem and little things on daily bases, but you have to stay strong for your mum and baby and that little miracle who come on the world shoud keep your mum happy and positiv also. Living for grandchildren is the biggest motivation!!!

[Magick]

Funny face,
I really have a respect towards all ladies, who going through this. You are so inspirating ( i think there was many tough times passing chemo ets , dealing with many others things ) and you was still able to be here for others! 13 years with lung meta only showas how strong your believes are and how strong is your wish to defeat it! That should ve the biggest motivation for all of us. Thank you so so much being on this forum even i wish you have never ever been here.

[Magick]

Hi Butterfly,
I am in the same situation. But not after 10 years, to my mum it comeback in 5 years. The problem was, that nothing was suspicious, no pain, no other clinical problems, only CAE markers went from 2,3 slowly during 6 months into 2,8 ( which is still normal!!!l) and CA 15-3 went first from 28 to 35 to 51,9 and that was point when doctor become a red flag. My mum(doxirubicin,paclitaxel,ooeration,Alozex, now on Faslodex 500ml and zolendronat acid. ( my mum is 66 years )
With many many best wishes from czech republic

[funnyface]

Butterfly, Welcome. The good news is that it didn't come back for 10 years! This might mean that it is slow growing. I went 10 years and then it showed up in my lungs.I have been here 13 years with it in my lungs.

Best wishes for your mom! FF

[Butterfly1983]

Hi All,

My mom had breast cancer in 2008. Then for the past 10 months she’s had real bad pains in her hip. They are that bad she’s been unable to walk without crutches, not been able to drive etc. From the beginning she has raised her concerns re the cancer but been brushed off time after time. She had a hip replacement in September even though from scans they said it didn’t look too bad. After hip replacement she’s still no better. Finally she saw a difffernt doctor 3 weeks back who sent her for an urgent bone scan and we were devestated to hear the scan is showing bone mets in skull, ribs, spine and pelvis. We have our first visit with oncologist tomorrow. Has anyone else been in similar situation? I’ve been trying to research it myself and the outlook always seems pretty grim but after reading some of the posts on here it’s made me feel a little more hopeful. I have a newborn baby too and finding this so hard to deal with but trying to put on a brave face and hold it altogether. Any information you can offer is really greatly appreciated x

[silverlining]

Many thx for your kind, supportive sentiments dear ramade........what are your X'mas plans...?? x

[Kate21]

Hello Silver, It’s lovely to hear from you! Sorry to read you’re still in pain but so pleased about your biopsy result. I hope you have a much better year ahead, don’t forget to let us know how you’re getting on. Very best wishes, Kate xx