Bone mets - please join in

[Chocolates]

Morning ladies, gosh there is so much to catch up on.

(((((Janette))))). Sending you loads of hugs. I hope today you are feeling a bit more upbeat. We are all here holding your hand xxx

Orse, I'm so sorry you are having problems accessing drugs - it really doesn't make sense as Helen has pointed out. Fingers crossed things settle quickly and the current combination keeps you stable. There seem to be more and more trials coming out now for TN so hopefully soon they will introduce a new drug for you which you will be able to access!
Hello everyone else - how are we all doing? I see you lot are running riot in the cafe. Popping in later with my whistle to restore some order - teacher angry eyes will be employed!!

Have a good day everyone.

Huge hugs,
Hxx

[Jam]

Huge hugs Janette and anyone else that needs some today xx Janet xx

[belinda]

Sorry C, I didn't realise you'd had a second opinion. It makes me so mad there's different rules applying in different areas, as Helen has said she's (quite rightly) having Eribulin. And remembering you are a Mum to two young children too. Just don't understand the priorities behind how the NHS spends and wastes it's money at times. Yes don't rule out applying again. We do a very good collective angry eyes. Helen will verify it's scary. X

[Orse1970]

Hi ladies,

I have been for a second opinion... Went to the Christie and spoke to one of their oncologists who specialises in TN...

Unfortunately she said exactly the same thing..

She looked at my file and said that the carbo/gem chemo would be the one that she would recommend..,
Told me to wait until disease progresses further and to contact her again and she will look at trials/review my options..

But she said that eribulin was not available for me .. One more thing I had to cope with at the time.. Think I was going a bit crazy then but it is sinking in now, and I am feeling more normal..

Can't understand why the govt introduced the CDF if it's not gonna use the new drugs which are being developed!!! Might appeal to the company when the time comes and maybe a letter to my MP... You have to try 😃

Thanks for the advice tho.. I'll try anything if anyone has any more ideas!!

C xx

[rosie53]

Thank you Helen, will be across shortly, hope there is plenty of chocolate and cake to go with it, in need of some "comfort food" 

Mermaid, thank you.

Huge hugs Janette xxxxxxx 

[2catlady]

Janette,just remember we are allowed "it" to get to us. Regardless of always being positive or happy the gremlins can creep up anytime.

There will be a large glass of bubbly waiting for you in cafe.
Take care,huge hugs,Helen xxxx

[rosie53]

Newey47, oops sorry for getting your "name" wrong flipping  predicted text!!

Janette xx 

[Mermaid007]

Big Hug Janette allow yourself this day and tomorrow you will be up and at em ! Xxx

[rosie53]

Belinda, Helen and Marie, thank you for your thoughts, feeling a little better already, for the most time I am positive and happy with life but as you all know sometimes the big C likes to smack you in the face!!!

Thanks Hugs Janette 

[newey47]

thanks for that Janette - had to ask x

[rosie53]

Hi New eye,  TN=triple negative  and NED=No evidence of disease 

Hugs Janette xxxx 

[newey47]

can you please tell me what TN and NED means x

[belinda]

Hi Helen and C, thinking about your post C, I would definitely get a second opinion, especially as you can't have the Taxanes. The Onc needs to be on your side, never mind any "rules." Helen I hope your squatters are getting very slow and far too silly to think about adapting. X X

[2catlady]

Orse,that's a load of rubbish. The only chemo ive had was capercitabine which failed after three months. I went straight onto Eribulin .
Im so pleased you treatment is giving C a good kicking xxxxx
I understand what being TN does to you xxx I had a total meltdown when Tracy (Desi) passed away and now our lovely Bev who's is now out of options.
I get my results next Thursday and I'm hoping that the B squatters haven't adapted as quickly as they did last time.
Huge hug,Helen xxxxx

[belinda]

Hi C, could you join the Port club? I have a Port, it was easy peasy, you can swim, it's much nicer, I think, than a line. After it was fitted, local anaesthetic, I pretty much forgot it was there straight away. X
Sorry you're having a bad day Janette and Marie. XX
SSue, welcome, but sorry you have to join us, I replied to you in the Cyber Cafe. X
Welcome Pleasant, this is a supportive place. X
Hi to everyone else. 🙂 x

[2catlady]

Oh,janette ,huge hug coming your way xxxx. NEVER apologise for your feelings xx

We all know what you mean. If you need a cry then cry. I think we put this brave face on all the time mostly for other people. Sometimes it just gets too much and you need to let your feeling out.
We are all here for you lovely lady,huge hugs,Helen xxxxxxxx

[Marie123]

Janette, sending a huge hug. Something similar happened to me today. Will meet you in the cyber café for pre drinks. We can discuss our 1950s outfits for the weekend. Cary Grant says he will pop in again. Take care Marie

[Orse1970]

Hi Helen

Thanks for the reply..., things are starting to settle down with me now, I'm still finding it hard,, more so because of my cancer being TN.. i know you are well aware of those fears and the lack of treatments.. But my new normality is starting to kick in..

I've been to see oncologist today and skin mets have reduced after my first dose.. So second one tomorrow..its buying me time.. New treatments and trials all the time.. Heres hoping..

She refused eribulin as I have only had one chemo regime after my secondary diagnosis Apparently CDF insists you have at least two chemo regimes which must have failed prior to prescribing Eribulin.. She just says 'rules are rules' .... Nearly begging her but made no difference... So I think I missed boat where eribulins concerned... I haven't got the courage to ask what comes next as I'm allergic to taxane - major Anaphylaxis with taxotere..

I hope you are still good and doing well... I was so plsd to see your post on your cancer anniversary!! Long may it continue...

(( hugs ))
C xx

[rosie53]

Hi lovely ladies, hope you're all keeping well.

In need of a ((cyber)) hug, having a "blip day" just wish I could have just ONE day when the big C doesn't enter my head 😓 I woke up fine and then a friend text me to say how brave I am!!! It set the tears off and now I just can't seem to shake this dark cloud off.

Sorry for the miserable post but you ladies are the only ones who truly understand.

Hugs Janette xxxxxxx 

[2catlady]

Hi,orse, I hope you are feeling a bit more yourself.
I'm sorry I can't help you with your line. I've also read about no swimming and baths. If you got it taken out you still may not be allowed to swim as pool water is full of bacteria and if your wound is still healing and low immunity ( especially other countries that don't have same standards )
Hopefully one of the ladies can help.

I read on one of your posts your onc said no erubilin,why can't you have it did he say. I'd nag him as its off CDF in July.
Huge hugs,Helen xxxxx

[Orse1970]

Hi ladies

Just a quick question.. I am currently on carbo/gem IV chemo and have a picc line fitted as my veins are horrendous..

I've booked a family holiday for the summer and will obviously want to go swimming with my boys, but both oncologist and nurses have said you can't get the picc line dressing wet, no swimming etc ... Ive done a bit of research and have found these picc line covers look a bit like arm bands, which the manufacturers say keep this area dry..,,
I was just wondering if anyone had used these covers and if so how they have found them?!

My only other alternative is to get them to remove the line before I go on holiday!! Don't really fancy having it taken out and put back in again!'

Thanks.,
C xx

[Lynnq]

Hello everyone - especially the new ladies, hope that you are all as well as you can be.
Just a quick recap on me for the new ladies may be a little reassuring. I was diagnosed about 30 months ago from a routine mammogram. Had primaries in both breasts, also discovered i had bone mets, upper spine and first few ribs, pelvis and skull. Also had a lesion under my R breast which had BC cells in and shadows in peritoneal are which my ONC said were cancer.
I an am on LETROZOLE and zometa infusion every 4 weeks and Adcal which are calcium supplements.

My bone mets have remained stable, there has been no more eruptions in my skin and the shadows in my peritoneal area are no longer showing. When I asked my onc if that meant my peritoneal area was now clear his reply was that all of my results, put together meant that the treatment was working,
I was a bit concerned at first that hormone therapy wouldn't be enough - but I have had 30 good months including some fab holidays.

I read these posts every day and receive a lot of support and many laughs. Don't post too often because some of the ladies here are very articulate and say exactly what I would say.

Love to all
Xxx

[Lucy_BCC]

Hi scoobiesue and welcome to the BCC forums where I am sure the support will be a great help

Please also feel free to call our helpliners for further practical and emotional support, our team are on hand for you 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

I am posting a link to the BCC secondary support and information which I hope you will find helpful:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

[rosie53]

Hi Nicky, thank you for your reply I have jotted a few things down to ask my onc next month when I see her.

Take care all

Hugs Janette xxxxxxx 

[Pleasant1]

Thanks all for your wonderful support. So much appreciated. I was bawling (again) before I got back on here!

Poor you Desperado. What an awful bedside manner to contend with. Just what you needed – NOT. I'm no man hater but some of them really are clueless when it comes to dealing with emotion.

Luckily for me I now seem to have an oncologist (female) with a much more caring approach and attitude. Although it's not as simple as gender – my boys being as soft and loving as they come. I'm going to have to toughen them up for the ride (again).

Mary

X

[Pleasant1]

Hi Nicky, I think I remember you from Nov/Dec 2011 when I started chemo? This site went through an awful upheaval and everyone seemed to scatter. And I just couldn't get on with fb when lots of people were pushing for us to move over to that. It just felt like totally the wrong forum to me! Soon (after CT no doubt!) I'll give some time to researching who's re-surfaced here.
Thanks to everyone for such wonderful support. X

[scoobiesue]

Hello ladies its so encouraging to read that you are able to live life well, I was diognosed with breast cancer in 2008. For the past seven years the cancer seemed long gone. A recent fall resulted in my fracturing my femur. The consultant mannaging my operation was able to see that the joint was craggy. This indicated that the cancer had spread to the bones. This along with a number of hot spots was confirmed by the bone scan My body scan indicated no further spread. The ongologist is very positive . I have has radiotherapy to the effected joint and am now waiting for the oncologist to review my treatment. It has been a most frightening experience. Thank you for sharing your stories and for the comfort you have given me

[nicky08]

Hi Vicky, sorry I didn't see your post when I replied to Janette.
In 2008 when I had my secondary diagnosisI found this forum so informative and supportive without the whole scary bits that so many sites seem to have. And it remains so today. I've learnt pretty much all my information from here as we all share so much, which also means we are sharing the opinions of all of our oncologists as well! My original oncologist who was fab and I had a great relationships was always asking about this forum and I said it should be compulsory reading for all of them! Reading on here about ladies living, not dying of, secondary BC made a huge difference to my outlook when mets were diagnosed so I hope all of the ladies newly diagnosed find the same calm after that horrendous storm. It also helped when I had spread to my liver as, again, I 'knew' of so many ladies living with liver mets who responded well to treatment. Also, ask away, all of us are more than happy to help.
Nicky x

[nicky08]

Hi Janette, I've actually now got liver mets as well, what I probably didn't phrase so well was that I still (obviously) have bone mets and they haven't caused me any problems over the past 7 or so years. I was 'only' a bone mets girl for 5 years before the liver mets were found in 2013. Having said that I'm probably one of the more unusual cases as my HER2 status changed which is probably why the hormone treatment stopped working after those 5 years and allowed the mets to spread. I was on an AI for those 5 years and responded really well. I was never told I was NED as with bone mets there is always evidence of disease unlike soft tissue mets where they can disappear with treatment. I wouldn't worry about what treatment you are on, just as long as it's working for you, which it obviously is. I'd keep chemo in the medicine cupboard for when it may be needed! I also didn't ask much about my mets especially when they were found in my liver. It was only last year that I had the courage to ask. I do know my bone mets have spread from the original two areas to goodness knows how many areas so I haven't asked the gory details, like you! As I don't get any pain or discomfort I know the Denosumab is doing its job and my last CT scan a month or so ago said they were all sclerosing , which sounds an awful term to use but means they are hardening, which is what we want!
Nicky x

[DiddyD]

Thanks Ladies. I'm so determined to just get on and live my life inspite of this darn disease - its great to hear there are others out there doing exactly that 🙂

Belinda/Julie - thanks for the oligometastic info - I'll definitely speak to my onc about it and see what she says but I would have thought its too early for me yet to think about it....need to go through the chemo/surgery/radio process for the breast first and monitor what happens to the bones in the meantime.

Diane xxx

[rosie53]

Morning ladies, welcome all the the newbies, hope everyone is doing okay and good luck to those having scans, results etc.

Nicky, I've just been reading your last post, I didn't realise you have had mets for 7yrs, are they only in your bones?? Mine are in my hips,ribs and spine not sure how wide spread they are though  (I'm a bit of a head in the sand girl) can't face all the gory details!!! My mets dx was last March and was put back on tamoxifen and I also have denosumab and zoladex injections. I have never had chemo  (thankfully) but just wonder sometimes if just being on tamoxifen is enough??? I am really well otherwise apart from being tired a lot and get a bit achey in my back, my scans have been coming back stable and due my next one in a few weeks, my onc never says if they are reducing in size or NED I think I will ask these questions when I see her. (Sorry if I rambled on a bit 😦) 

Hugs Janette xxxxxxx 

[aunico]

Nicky what a wonderful post and so encouraging! I have just a month ago been told i have bone lesions/cancerous areas up my spine and have started the two 'e' drugs recently. It is hard emotionally as you say till things settle down with treatment and to hear you say you've had these drugs for 5 years is wonderful! My oncologist errs on the side of caution but I am determined! If I'm tolerating it I'd rather stay on it! 

I mentioned mouth ulcers and had a giggle to be prescribed a massive bag load of mouth wash! If anyone needs any...

Thank you Nicky.

Vicky x

[nicky08]

Hello mets ladies, especially all the newbies that have had to join us - believe me, none of us want to be in this club! However, as we are we manage to support one another in the good times and bad and also manage a few laughs, particularly in the 'Cyber Cafe' thread when you want to join us.
Diane, I have been living with bone mets for over 7 years now and for the majority of that time have had very little intrusive treatment as hormone tablets kept me stable for nearly 5 years. In that time I have travelled on holidays, worked, got on with life basically so, although we all know how horrible any diagnosis of secondary BC is we also have learnt that you can live with it for many years. Bone mets never completely disappear, in my understanding, they just heal so the damage is usually still seen on scans as scarring. However mine, although have spread from being just a couple of sites in the beginning and are now more spread around my skeleton, show as healing and cause no pain. Usually as part of your treatment you will have one of the bone strengthening drugs, the newest ( and IMO the easiest) is Denosumab which is a small injection given 4 weekly.
Desperado, I see from your post you are HER2+, are you having Pertuzamab and Herceptin as part of your treatment with docetaxel? If so there is a Pertuzamab thread on here which will be worth reading. I can't believe how insensitive your oncologist was when giving you your diagnosis. They really don't understand the devastation this causes us and all our families, it's shocking.
Mary, I hope your CT scan is brought forward and you get your results quickly. I think so many of us feel this is almost the hardest part, waiting and waiting for results as you live in no mans land during that time. I also think that once we know the treatment we will be having and when it's starting we feel more able to cope. None of this is easy for any of us so take time, all you newbies, to adjust the the new 'normal'. This forum has been a lifeline to me since joining in 2008 and we share lots of good advice and information and also it's a place to come to when you want to scream, rant, share news or anything else in between as you know we all understand, something that family and friends really don't 'get' most of the time.
Hope all of the 'oldies' (sorry ladies!) are doing Ok and hope your scan went well yesterday Helen and the results are as good as Smartie's were.
Take care all
Nicky x

[JulieD]

Belinda, yes, that's what I was trying to remember!

Diane here is a exerpt from the Share site (an American womens cancer site)

Oligometastatic disease  refers to small isolated secondary breast cancer(s) that are stable (not progressing) and usually present only in one site of the body (oligo means ‘little' or 'few’). Can be treated by Stereotactic radiotherapy (also known as gamma knife or radiosurgery) A very precise radiation treatment for people with one or more small secondary breast cancers.

There's not a great deal of info around but there is a little here on BCC under treatments for secondary breast cancer, in the steriotactic section  http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast...

Basically if you fit the criteria it may be possible to have such treatment and though they wouldn't talk about cure there is some thought that this could result in NED - no evidence of disease - hopefully for many years. It is still not widely available and evidence is limited but it sounds like your Onc might be thinking in those terms and wanting to treat you aggressively.

What I want to say to all new members is hold onto hope. There are treatments now that weren't available  a few years ago, there are lots going through trials and more in the pipeline, there are treatments out there that although at present cannot cure us they can keep our cancer controlled. Yes it is scary and hard particularly at first but this dx is not (as I originally thought) an emmediate death sentence. Hope and hoe some more xx

[Jam]

Sorry Diane and Mary you have to join us but as the other ladies have said everyone on here will help where they can or will know how to get you the info you need. Its just knowing that there are a lot of treatments out there and more coming all the time. What I've learned on here is that whether you're feeling ok or not just mention your concerns and help, hugs and love come your way x Janet x

[belinda]

Sorry Diane, I must have missed your post. I (think) the term Julie mentioned for a small number of mets is oligiometastatic disease? I have been living with (many) bone mets for twelve years. Keep in touch we are a supportive group. X

[Lucy_BCC]

Hi Mary and Diane

I am sorry to read your recent diagnoses, in addition to the valuable support here please feel free to call our helpliners for further practical and emotional support, lines are open weekdays 9-5 and Sat 10-2 on 0808 800 6000

Here's a couple of links to the BCC secondary information and support which I hope will be helpful:

https://www.breastcancercare.org.uk/secondaries

http://www.breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support/living-seconda...

Take care
Lucy BCC

[desperado]

Hi Mary. So sorry about your news. I too have 'recently been diagnosed with Secondaries on the lungs and am still in shock. When I was diagnosed two years ago, I had a 1.8mm tumour on the breast. It was her2 positive and no lymph node involvement. Ihad problems right from the star, I had a hematoma and my treatment was delayed. After ha ing 6 Dec chemistry and radiotherapy I kept saying to the various different people that I was getting pain, no one took me seriously, until I demanded a scan. They reluctantly gave me one and when I went for the result s I was I was on my own as I was expecting good news. I hadn't even sat down when the oncologist told me the news. I thought I was going to pass out as he prattled on about it being good as I could still be treated. He continued to talk about my treatment options as I sat there stunned and was struggling not to cry. He then asked me when I last had a blood test and I said I didn't know. He then told me to wait outside in the waiting room for the nurse to give me the form. He got up and opened the door and I was left in a crowded waiting room crying and waiting for the form. The whole process took about 15 mins and in that15 mins my world fell apart. I am now getting docetaxol. I find this site extremely helpful. I recently read a post from Lauren and it really helped. Look through old posts, they will offer great advice. Just remember you are not alone, we all understand how you are feeling. Message me anytime and I will tell you of some of the things that have helped me. Sorry for the long post, It's just that I could so related to ,our feeling s. Hugs

[JulieD]

Hello Mary and Diane,

Sorry you've found yourselves here but am glad you found the site and this thread, you will find lots of understanding, support and information here. You can share your fears and frustrations and also your happy news when things go well, we have lots of laughs here too.

As the others have said, the first few days weeks months are hard, you need to give yourself time to take on board the news and adjust to your new life. Once treatment plans are sorted you will start to feel a little mre in control.

If it helps, I've had SBC (bones) for over 5 years now and have remained stable on hormones after some rads initially. I do take painkillers and my mobility is not as good as it was but I still live a lovely life. Some of my mets have shown signs of healing. There are women on site who have been living with SBC for 10+ years so take heart. Diane there is a term used for people who have just one or two very small mets, I can't remember it off hand but will get back to you with more info when/if I recall the details.

Best wishes to all on the thread hope you are all managing ok xx

[belinda]

So sorry you have to join us Mary but we are a supportive bunch. Hope you have your scan and the results very soon. X

[DiddyD]

Hi there,

My name is Diane, I'm a newbie. I've just recently been diagnosed with stage 4 breast cancer for the first time, having found it has spread to my bones. Having gone through the devastation of thinking there's no cure, my onc has total me that my bone lesions are both tiny, approx 1cm. So they are treating me with radical intent as they put it.

Does anyone here know of anyone who has had a positive story of the secondary bone cancer disappearing through chemo, is this even possible?

I started chemo last Friday so am hoping for the best, as I've two small girls (4 and 5) who really need their Mum about for a while to come!

Diane xx

[rosie53]

Mary I second what Helen has said, take time to absorb things, it's a very scary time for you at the moment but I'm sure that once you are on a treatment plan you will start to see light at the end of that scary tunnel you are in at the moment. Please feel free to ask us any questions there is always someone on hand to help and advice you.

Hugs Janette xxxx 

[2catlady]

Mary,so sorry you are joining us. You have come to the right place for support and advice.
We are a friendly bunch but slightly mad!
When you feel ready please join us ,as we all understand how you feel. More than friends and family as we walk in SBC shoes everyday .
Huge hugs,Helen xxxxx

[Pleasant1]

Dear all

With great saddness I'm back here too, and awaiting a CT scan. I'm in touch with it in a frighteningly real way now – the lump I mean, and the constant pain – up high at the back of my ribs. I can't bend without pain, I can't lift without pain. Lying in bed is also mostly painful. To be honest it's been ongoing since November – but I didn't act on it. I'm now dosing correctly on standard painkillers as its vile claws gnaw away at me.

I saw various doctors who seemed eager to put it down to my excessive renovating, and I was more than happy to live in denial with them. I should have listened to a physiotherapist I happened to see early on, but as my husband explained, the cancer **bleep**, to quote Lisa Lynch, had been there all along. Although not to be sneezed at, Chemo merely bought me some time.

In desperado fashion I'm going about attempting to bring my scan forward; crying on the phone, that sort of pathetic behaviour. At 47 it's my loving, beautiful boys, 9, 12 and 14, I can't stand the thought of losing. Not to mention my man and the idyl we continue to slog our guts out for.

Reading your threads makes me more emotional. My heartfelt wishes of salvation go out to you all. I haven't spoken to many family or friends yet. I don't know what to say, other than the **bleep**'s on the move, out to get me and render my loved ones low in the process.

I'll try to report more when possible.

All best

Mary

[belinda]

Oh what a time you had of your CT Julie. The results will have to be excellent now to make up for all the stress. As if it's not stressful enough. 😞 Glad Chris's funeral was a fitting tribute to a great lady. X

[JulieD]

Good evening ladies. Janet, what lovely news, congratulations! I bet you can't wait to have lots of lovely cuddles.

Been a busy week for me. Monday I had CT scans in London (live in Sussex and have treatment here now but London is where my Onc is and wanted to stick with her so  I have scans and follow up appts there). Not the best of appts, have a power port but they can't/won't use it for contrast so had the cannulation battle, first radiographer couldn't do it, got a more senior member, couldn't do it, got consultant, eventually managed to get vein - hoorah! CT machine woldn't work- boo! Several attempts. on and off machine , resetting etc eventually managed, only took about two hours Too tired and stressed to visit parents as planned.

Tuesday a nicer day, met a SBC friend who I've known here and on FB group for several years, had lunch together and was lovely to meet her and was like chatting to an old friend. Had a meeting in the eening so missed live chat, didn't get in till nearlly 10pm.

Wednesday, early start. Went to Chris's (Steris) funeral. Was a nice day and a lovely drive and the service was just right, a mix of smiles and tears, a sad occassion but a lovely tribute to a lovely caring,funny woman.

Thursday and Friday busy but boring, so glad to try to catch up with some rest this weekend.Cyber cafe for massage I think xx

Hope everyone, specially the new members, have managed to have some good times this weekend and hoping the week ahead brings positive news for those waiting for results.

Tinks, have just caught up with the other news, please do not leave, there really is no need, you've said/done nothing wrong and we will miss you.

xxxx

[LemonDrizzle]

That's lovely news Janet, I bet you're counting down the minutes till you meet him x

[Marirose]

Congratulations Janet 1st grandchild is always special xxx

[Lynnq]

Congratulations Janet, brilliant news....bet you can't wait for cuddles. Xx

[belinda]

Morning all. Keep making plans for the Frozen party Helen! Congratulations Janet on the little grandson!
Off to the cafe for a late cooked breakfast. X