64954members
342192posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

It is really interesting that we all have similar disease but have widely varying treatment plans!

I have triple receptor positive BC. Everyone was aiming for cure despite large tumour (8cm!! in an A cup!) and 11/15 nodes positive and grade III. I got breathless and a scan showed a bone met that was there previously but missed.

I completed the original plan - FEC-T and then 15 radiotherapy. I also started tamoxifen and herceptin part way through FEC-T. I have asked about denosumab but been told no need. My current plan appears to be stay on herceptin and tamoxifen. I am having 3 monthly staging CT scans. They may stop soon but because of lung 'nodule' will continue with lung scans. The nodule is not cancer apparently but has shrunk with treatment . I struggle with that as if it wasn't cancer it wouldn't change. I am not looking for problems so on a good day I just carry on as I did before diagnosis but take tablets and maybe drink more wine!

I hope everyone had a good weekend

 

Highlighted
Member

Re: Bone mets - please join in

Law21, i would def question why she isnt on denosumab or zometa, these are both bone strengthners and also help with pain, the denosumab is the newer and easier one.
Hope you mum is feeling better soon
J x x
Highlighted
Member

Re: Bone mets - please join in

Hi Natalie1 no she's not on any injections of Any kind .... You just worry over everything don't you thinking is this normal .. Is it infection .... Is it the worse. She has been so brave and fantasyic and so positive but I can see that it's really taking its toll as well with the treatment ;-( I will ask her to ask about the injections and we are deffo going to ask radiologists tomorrow thanks cxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Law21, sorry to hear about your mum, she has mets in same places as me :-( i dont know if having radio can cause problems you have mentioned, is she on denosumab injections? As these can cause problems with your jaw and should be reported to her bcn or onc.
Hugs to you and your mum
J x x x
Highlighted
Member

Re: Bone mets - please join in

Hi I find this forum amazing ... Full of brave ladies just like my mum helping each other . I was just posting for some advice really my mum was dx 4 years ago with Breast cancer after having a mastectomy on the right side , chemo and radium , ( and a very hard year ) all looked great until last feb when she had a fall and they found out unfortunatley that the cancer had returned in the bones ... They found it in Her spine , ribs and pelvis after nearly a year on letrozole have now changed her meds as found slight progression in her ribs so bless her she is now in the middle of radium by t ment to the ribs ;-( only thing is after her2 nd day she felt having radiume she felt like she had ear / toothache now on her weekend off she is in pain with her jaw and you can see that it is swollen !!! I was wondering if anyone would think this is a side effect from the radium as it is the same side as she is having the radium ...... It has only started this week and we are going to have a word tomorrow at the hospital I was just wondering if anyone had heard anything similar ? Cxxx Thankyou and even thoughi don't comment a lot I always read the posts to keep my mum informed x
Highlighted
Member

Re: Bone mets - please join in

Thanks Almalfi
The reason I asked is because I am ER/2 which is classed as TN but last year I was put on Exemestane as onco said I had nothing to lose and it might just work (I believe it did ) I certainly felt better while on it but was taken off and started on capecitabine 11months ago.My TM have risen all the time on Cape whilst being stable on Exemestane .this horrible disease keeps on surprising us my changing course all the time.
I am sending Bev lots of love as I know she is having an extremely difficult time at the moment and I can relate to the breathlessness
Helen I hope you are feeling better this week
Best wishes to everyone stay positive and strong hugs Macie xxxxx

Highlighted
Member

Re: Bone mets - please join in

I'm strongly er/pr positive her 2 negative.
Highlighted
Member

Re: Bone mets - please join in

Hi Almalfi can you tell us if you are TN or ER+ being is you are on Letrazole x x

Highlighted
Member

Re: Bone mets - please join in

Bev, I think we're our own worst enemies at times. We search these websites hoping for something to cling on to which will make us feel less despondent about this horrible disease, but I've found that it rarely works on US sites. After trawling through numerous posts about having lung, liver and bone mets, I had myself dead and buried before my treatment even had chance to work. I also couldn't cope with the references to motherships, sisters and God so I keep well clear - I got more comfort from reading information on here long before I joined, so I stick to this site for the friendship and brilliant advice from the ladies instead. Remember you're not a statistic and there are drugs which will work for you.
LD x
Highlighted
Member

Re: Bone mets - please join in

Bev, i was diagnosed in Feb 2014 after feeling sick since the Dec. They started me on paclitaxol in May. Tumours grew but there was 17 weeks between scans so not sure if they had grown then shrunk on treatment or if the treatment hadn't worked at all. I only had 7 weeks of paclitaxol
They then put me on letrozole and I responded very quickly. From not bring able to walk the length of myself I jaunted off to Italy on holiday in September and felt really well
Still do but they have found a suspicious mark on my liver. Getting an mri scan on Tuesday to investigate further.
Highlighted
Member

Re: Bone mets - please join in

Morning ladies
Bev, please don't do to much web searching you will drive yourself insane reading about stats and prognosis etc, remember we are all individual and all respond differently to treatment, i refuse to read anything like that instead i choose to deal with things as and when they arise.....its the old saying ignorance is bliss!!!
I had a lovely day yesterday, it was one of my best friends 50th birthday and we went to The Midland hotel in Manchester for posh afternoon tea and champagne there was 17 of us we had a fab time :-)
hope everyone is ok and are having a nice wkend.
Hugs J x x x
Highlighted
Member

Re: Bone mets - please join in

Hi Jo...yes ive joined in a few times and found it really helpful. Even better now i can use my tablet to login. Thank you xxx
Highlighted
Member

Re: Bone mets - please join in

Hi Bevlaar

 

Sorry to hear you're feeling down.  You might like to join in our Secondary Live Chat service which runs every Tuesday evening between 8.30pm and 9.30pm here you can talk openly in real time about your worries/concerrns with likeminded people.  The service is hosted by a nurse who is here to help answer any questions and a moderator is at hand to help on the technical side.  The regular users of this service are a wonderful support to one another and often the chat becomes light hearted which I am sure helps when you are so worried about what is happening to you.  I will put you the link below, have a look and see if you would like to join us - you'll be made most welcome.

 

http://www.breastcancercare.org.uk/community/chat

 

Take care,

Jo, Moderator

Highlighted
Member

Re: Bone mets - please join in

Thanks amalfi. Seems we're similar there. Hopefully my symptoms will improve. Are you just on letrozole now...no chemo? When were you dx with mets?

These usa sites and forums are very hard hitting i think. Best for me to stick with my friends here and just take the advice and info from professionals such as the really kind caring chemo sister i saw on friday.
Love bev xxxxxx
Highlighted
Member

Re: Bone mets - please join in

I was quite ill from Jan to July last year with mets to my lungs an pleura. Very breathless and lost a stone in weight. I've been on Letrozole since July and have no symptoms and have gained half a stone. We may have a worse prognosis that those with bone mets but it surely depends on our response to treatments.
Highlighted
Member

Re: Bone mets - please join in

I despair..this roller coaster of a disease. I was feeling a bit better yesterday about my treatment plan but tonight i looked at an American forum about bc mets in lungs....oh dear...huge mistake. These are what most of the postings read:
• Long term survival rates (possibly over 10 years) are those with mets to bone.
•Poorer survival rates where there is visceral met activity especially lung and heart.
•And worst prognosis where there are triple negative mets in these organs as there are fewer treatment options available resulting in shorter survival rates.
•Progression of symptoms i.e. breathing problems and weight loss would suggest a decline in health and approaching end of life......

Wow...i have most of this. My weight has gone from
11 st 1 in Oct to 10st 3 last week due to slight loss of appetite and then of course is the breathlessness.
Depressed or what ??? I am concerned that i seem to fit all of the above...especially the weight loss despite eating well.
Please tell me things are not as black as they are painted here!
What is it with some of these sites? Think i should avoid these in future!
Xxxxxxxxxxxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Bev, glad you had such a good experience, chat with the hospital, it makes all the difference, gives you a much needed boost.
Sorry to hear some are feeling the aches and pains. I am looking forward to the longer days.
Chris I am on weekly Paclitaxel, just had number 2 yesterday and can feel the two days I had last time, weak legs, pains, now coming on. It was just the two days though, I was told it's kinder to have weekly. Good Luck, PM me anytime if you think I may be useful. X
Highlighted
Member

Re: Bone mets - please join in

Chocolates and natalie....keep yourselves warm..this weather can be biting. Not having bone mets i don't know what the pain can be like but can only imagine its debilitating. Hopefully its nothing more to worry about. 💖💖
Roll on spring and summer! xxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi chocolates, interesting to read that this cold weather is making your bones ache more, my back has been a lot more painful since christmas and as my TM have slightly risen i have been convincing myself there is progression (even though CT showed stable). This is my first winter since dx so still on that learning curve.
Hi to all hugs J x x
Highlighted
Member

Re: Bone mets - please join in

Pleased for you Bev glad your treatment went well,and that was so good of the nurse to reassure you.I am treated at the same hospital and my team are great especially my BCN when I had my Ct results she even gave me the report to take home but actually sat there with me explaining it all but because she knows how anxious I am she said seeing it in black and white would help..I have every faith in my team down there and she has said it is not just your own Onc who decides treatment but it is discussed in MDT meeting as you said .hope everyone is feeling ok
Take care all
Kaye xxx
Highlighted
Member

Re: Bone mets - please join in

Morning ladies, Bev im so impressed with your nurse for taking the time to talk to you and reassure you. What a difference that makes. So pleased you are now feeling a little better about it all. Let's hope this chemo now works and it is the one for you. I hope the SE's are minimal and you cope well.

Steris, sorry to hear things not quite as good for you. I hope bev's posts will give you a lift and hope that even though things do have to change there will be a treatment out there for you.

Morning everyone else, just taken time to catch up on all the posts. Hope everyone is doing ok today and manages a decent weekend. Busy here with family and I must say it's slightly warmer in the south today. This cold weather is making my bones ache more. Got an ichy forearm too - had it for a while. Seeing onc in next couple of weeks and will mention. Telling myself it's not skin mets, must reaction to h&p. My cough hasn't gone yet either so a little bit on edge that things might be progressing. Decided not to bring onc appointment forward as wanted to continue to enjoy my time at the mo. Two more weeks isn't going to make that much of a difference.
Anyway have a good weekend everyone.
Huge hugs xxx
Hxx
Highlighted
Member

Re: Bone mets - please join in

Hi chris...sorry youre still having progression. I know only too well how disheartening that is. But lets hope your scan in a few weeks will show some improvement. Fingers crossed love!
What was your previous taxane?
I know its a harsh chemo but I'm sure I've read on here that weekly Paclitaxel isnt quite as bad. Perhaps other ladies can clarify. So I'm sure you'll be fine. Stay strong xxxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Really pleased for you Bev. What a lovely nurse.
Highlighted
Member

Re: Bone mets - please join in

Pam....we are very lucky indeed to be having such marvellous care. We're not always aware of what goes on "behind the scenes" so to speak. It was so good of her to come over to us yesterday and talk. Most patients just had their canulas removed and went.
They even rung me again at 6pm to say they'd had another chat on ward and looked at my notes after id left and even though you dont especially need 3 days steroids after carboplatin, they remembered me saying earlier how much the dexamethasone helped with my breathing when i was on docetaxol so rang to suggest i take them again in a smaller dose just to help the breathlessness over weekend.
Cant fault that for service.
Hope to see you perhaps at the next BCC meeting Pam...and thanks again for your help xxxxx
Highlighted
Member

Re: Bone mets - please join in

Oops, I haven't been on for a while but trying to catch up with all your news on my phone and it's so easy to press the wrong button.

My bones mets are stable at the moment but still give me an incredible amount of pain. I had a large dose of radiotherapy at the end of June to L2 and S1, I had terrible sickness afterwards but it didn't take long for the pain to return.
My next scan is on the 18th February and I'm seeing oncologist on the 5th march. I've been on eribulin since the middle of June but liver mets are still progressing through very slowly and if it's the same in march then I'm going on weekly pacitaxol. Not looking forward to the weekly visits or being back on the tax again. Had a hard time on tax before.

Thanks for listening,
Chris xxx

Member

Re: Bone mets - please join in

 

Highlighted
Member

Re: Bone mets - please join in

Thanks...looking forward to bedtime now but just wanted to post this about what the Nurse said as i know that a lot of you can probably relate to it too and appreciate what she's said.
Goodnight all! Sleep well xxxxx
Highlighted
Member

Re: Bone mets - please join in

So pleased for you, your chemo sister and all the oncology team sound wonderful. Have a good sleep xx
Highlighted
Member

Re: Bone mets - please join in

Very pleased it went so well and that you feel so much more reassured....its good to know there is very logical thinking behind the plan isnt it......We are very fortunate that we are treated in a centre where there is an MDT for ladies with secondary cancer...it by no means happens everywhere even though it is one of the standards of care for treatment of secondary cancer......hope you are able to sleep more soundly tonite. hugs Pamx

Highlighted
Member

Re: Bone mets - please join in

So pleased that it went well today Bev and the nurse sounds wonderful. Hope you manage to get a good nights sleep.x

Highlighted
Member

Re: Bone mets - please join in

You must be feeling so much better tonight and what a lovely nurse to reassure you so much.
LD x
Highlighted
Member

Re: Bone mets - please join in

That sounds so encouraging Bev! Xxx
Highlighted
Member

Re: Bone mets - please join in

Hey Bev, that is so good to hear, really pleased it went well and you are feeling much better this evening.
Hugs J x x
Highlighted
Member

Re: Bone mets - please join in

Thank you very much....all of you. I feel more upbeat tonight. Chemo went well and when it finished the sister on chemo ward pulled up a chair in front of us and wanted to reassure me that there were certainly a lot more options for the future and they certainly werent going to leave me out on a limb!
She said it was unfortunate that the first 2 didnt work but it happens to others too. Not the majority but it does happen. But they would just keep going until they did find something!
She went on to explain why my Onc decided on this treatment going forward and that my case is discussed in great detail at the MDT meetings weekly along with other ladies with metastatic disease.
She was present at these meetings and said that Onc was now thinking outside the box ...he had been treating me as weakly positive 3/8 and given me the chemo that normally works well for that i.e. docetaxol and cape but as both of those didn't work, he now wondered whether i am in fact leaning more toward triple negative. So he's giving carboplatin as that is whats normally given for TNBC (quite successfully) and the letrozole in case i am producing small amounts of oestrogen!
She said my plan was discussed with 6 other oncologists, some of which are top in their field.
Also they are looking at suitability for trials weekly and she in fact was part of the Clinical trials team at the hosp. However she said if a suitable trial came up somewhere else in the country they would refer me. Even said if she saw something she would ring me herself! She was so lovely.
So much hope and encouragement. I'm so lucky to be at a centre of excellence such as this with such caring genuine staff.
Goodnight ladies. Thank you all once again for supporting me and bringing me out of the depths!
Love bev xxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Bev, so so sorry dont know what to say to make anything better for you...i just want to echo everything everyone has said. I know its hard but please dont give up..easier said than done, i know. Everything crossed that the next treament works. I have has doaxetol and capecitabine (skin mets) and my next thing is Letrozole ..lets hope it works for us both. sending huge hugs,xx

Highlighted
Member

Re: Bone mets - please join in

So confused about when they decide anything is significant or not! Thought scans were always more reliable than TM's...the onc is always saying that.....

 

...yet, I saw my TM dropping slightly last two times I have seen him, BUT my CT scans show growth in the liver tumours AND new liver mets, but he has kept me on the same treatment - that I dont think is working for me. I am in a lot of pain and discomfort unless on strong pain relief....Have told him about pain, and he just said try peppermint oil.

 

Worried and confused....

 

Mowser xxx

Highlighted
Member

Re: Bone mets - please join in

Hello everyone.
Hope that you're feeling a little better Bev - it is very hard to stay positive all of the time, sometimes it is nice if other people can be positive for us, and I think that everyone here is routing for everyone here - if that makes sense. All the best with your next treatment..this will be the one......

Natalie....the TMs question really confuses me as well. I saw Onc last Sept who insisted that I did NOT need a scan since my TMs were still going down.....it was a year since I had one so I insisted and he eventually ordered one...very reluctantly and he was a bit sarky.
When I got my results I saw a different Onc.....same clinic/hosp. Who told me that my scan was stable...yay!!!.......but he also told me that my TMs had 'drifted down' (his words) by a couple more numbers but - he said - since mine were never very high they wouldn't rely on them too much......
They started at 412 two years ago and are now 35...i know that is reassuring but just wish oncs would agree.
Good luck to everyone having treatments/results etc. today...
Highlighted
Member

Re: Bone mets - please join in

Good morning everyone
Belinda, hope today's treatment is kind to you, it must be difficult having to go weekly but worth it if SEs aren't quite as bad.
Nicky, no playing hunt the vein makes it so much easier and painless.
Bev, never feel you shouldn't share your true feelings. As strange as it may seem, all the information and advice from Belinda and the other ladies helps us all too.
Natalie, I would have thought oncs at the same hospital work the same way too, but it must be more of a personal thing instead of standard procedure.
Hope everyone has the best day they can
LD x
Highlighted
Member

Re: Bone mets - please join in

Good luck to all of you today with your various treatments... xxx

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Belinda, good luck with your treatment today as well, hope you don't suffer too many SEs. I had quite a few aches and pains after my first Taxotere so maybe you will be better after this second infusion of Taxol. Fingers crossed.
Good luck also to everyone having treatment today or scans and I hope anyone suffering with pain or SEs gets things sorted quickly. Currently I'm hooked up waiting for my Herceptin and Perjeta, thank goodness for my portacath, and at least I haven't had any noticeable side effects so far, hope I haven't jinxed it.
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Good morning lovely ladies,
Bev,all my love to you today. We are all with up xxx this chemo will work or it has my angry eyes to deal with.
Massive hugs lovely lady,Helen xxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi natalie, I have TM's, know it's hard not to get fixated on them, as I am, but the numbers are soooo small for you, honest, that's such a slight difference in your readings. X
Go Bev, hope this chemo is the one that makes all the difference. Chemo is hard even when you hope it's working well, you have coped amazingly well. We are all by your chemo chair today. X
Hope you are ok Helen and happy start of the weekend to all. X
Highlighted
Member

Re: Bone mets - please join in

Bev you DO NOT have to apologies for being down and upset!!! You have had a tough time and can only imagine what have been going through, be easy on yourself :-)
Hugs J x x
Highlighted
Member

Re: Bone mets - please join in

Good luck Bev......Im off to the big shiny place today as well for MRI/CT.... results tues....maybe see you?xx

Highlighted
Member

Re: Bone mets - please join in

Good luck Bev with your treatment today,stay strong and I'm sure this one will kick it into touch
Kaye xx
Highlighted
Member

Re: Bone mets - please join in

Thanks ladies. Trying to stay positive but its so hard when youve had so many knock backs.
All i want is for something to work for me. This would have been my 4th chemo and would have finished by 6 march. Now.... (thats if i actually get to complete 6 this time!) I wont finish till beginning of may.
Due to go on holiday to greece mid june so i suppose that hangs in the balance now too 😥
Why is nothing straightforward for me?

I love reading all your posts about chemo shrinking the tumours ....its so encouraging and gives such a lot of hope. And I'm thrilled for each and every one of you lovely ladies.
I dont want to be any different...i dont want to be the one that this miserable bloody disease gets the better of.
Im sorry for being so down and i really am trying not to get upset....again! But its hard to deal with.
Hope everyone else with results due does well ....I'm rooting for all of you. Youve all been so so supportive even when youre going through your own traumas and pain.

Helen...hope things get sorted out for you. Dont suffer over the weekend.
Lots of love and hugz to everyone else. Bev xxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Good luck today Bev, stay strong and kick ass!!
LD, you are at the same hospital as me arn't you? I wonder why your onc dosnt use tumour markers?? I would have thought oncs at thd same hospital would work in a similar way??? Oh the old TM saga puzzles me!! If my CT was stable why is she concerned that my TM have risen?
Hi to you all, hope you have a nice pain free day and good luck to anyone having treatment, results etc
Hugs J x x x
Highlighted
Community Champion

Re: Bone mets - please join in

Good luck today Bev, let's kick some @ss
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Bev, hope treatment today goes well and the side effects are minimal.
LD x
Highlighted
Member

Re: Bone mets - please join in

Thanks for your comments ladies...natalie so pleased you have a holiday booked. New York will be great! I'm just hoping my hol to greece will still come off in june. I remember saying back in Oct that i was twitchy about booking it so far in advance. ..i always seem to be jinxed when booking things. ..especially holidays.
I cant envisage me being well enough the way i feel at the moment.😥