Bone mets - please join in

[2catlady]

Janette, I cried buckets when Holley showed the photos of her children.
Pop along to cafe the weather is beautiful there.
Hugs,Helen xxxx

[rosie53]

Morning ladies, well back to miserable wet weather.....typically weekend weather I should say!!!

Hope everyone is okay, oh I just watched the video of Holleys Kitchen how touching, it even brought a tear to my hubby's eye, I don't tend to go on the other threads, I just jump on here to keep up with everyone that's why I have only just seen it.

Hope you all have a lovely weekend 

Hugs Janette xxxxxxx 

[edwina64]

Way to go Vicky great inspiring attitude. .brill x

[JulieD]

lalie try http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/The-Cyber-Cafe-Welcome-ALL-mets...

If that doesn't work go to living with secondary cancer and look for The Cyber Cafe welcome all mets ladies .....click on that link   See you there later! x

[lalie]

Morning, How do I get on the cyber cafe ? Many thanks x

[duckgirl73]

Sorry, I'm new to forums so thought I was replying to individual comments! Just want to say thank you and I am so glad that I foiund this forum and speak to people that can understand. I am at the griefing for the loss of the life I thought I would have and I think about my beautiful young children. But I know I will move on from this stage and lkike you say discover a new normal. I am currently trying to pursuade my husband to buy a caravan so we can have more quality time together as a family. I am still recovering from a corpectomy and hip replacement but hope to be out of the brace in a couple of months and then I can drive and resume a morw normal existence. Thank you for all your lovely comments and advice. Hugs xxxxxx

[duckgirl73]

Thank you. It is lovely to hear from someone in a similar situation. I think that is what I am finding the hardest- being a mum to two young children. I know it is raw and I will move on from this stage at some point. I am so glad I found this forum where I can speak to people that really understand. Sending big hugs xxxxx

[duckgirl73]

Thank you. That's what my family keep telling me that there is always hope as new drugs are coming out all the time. Were you initially doagnosed with secondaries in the liver and lungs? hugs xxxx

[duckgirl73]

Thank you. That does help thinking about it like that xxxx

[2catlady]

Oh,I've just realised it's my 2year cancerversary ! Well I've lived six months extra than they said. TNBC basically all over.
I'm now working on being 50 next year and having a Disney /Frozen party. All pretty ,sparkly the works❄️❄️❄️❄️❄️❄️🎈🎈🎉🎊
Hugs,Helen xxxxx

[edwina64]

Hi everyone and the newbies, sorry you are here, but this forum is a great inspiration as to life expectancy  we do have to take it one day at a time and I must admit (was diag double whammy 18mth ago) that is qute hard sometimes. at first I felt my future had been taken away from me. I do have down days but have learned to be thankful for the time I  have. I am 65 which I thought was young until I hear how young some people here are.

My lovelh Dad died from Cancer at age 63 ..30 yrs ago now they didn't  even have chemo then and if they did he would have lived  so much longer..time has moved on and my bcc nurse told me because of the hugh womens movement against bc ther are new treatments coming thick and fast so there is hope so just hang on , live your life to the full while you can and you never know......x

[2catlady]

Good morning and welcome all the newbies xxxx pop over to the cafe and have a cuppa . this is a Cancer free zone and just used for a laugh and time away from C. If you read the posts you will see what I mean. We are all slightly potty too!

Our Nicky has said everything,waving hello to Nicky 👋 . I love the bbc weather app too. It's lovely in NE AGAIN ☀️☀️☀️but apparently it's all change tomorrow.

So a huge welcome hug to all,Helen xxxxx

[belinda]

Morning all, no rain here, yet.
Hi Vicky, so sorry you have to join us but we are a very supportive group. What treatments are you having?
Have a good day everyone. XXX

[nicky08]

Morning ladies 😊
Goodness what a lot of activity on here yesterday evening! I tend not to check later on in the day but it's so nice to see the great support we all give each other particularly to newbies as we all know how awful those first few days and weeks after secondary dx are. As the other lovely ladies have said we do tend to post a lot on here as it's the most active thread on the secondaries part of the forum as you can see from the number of posts. Also most, if not all, of us do have bone mets along with any other mets. However there are specific threads, particularly in the Treatments..... Section which are worth checking out or posting on if you have questions about any part of your treatment plan. As to stats, as I've said before, they are way out of date and would have been compiled before any of the new treatments are taken into consideration. When I was diagnosed with my primary in 2003 FEC chemo wasn't even used whereas now is is the gold standard for hormone positive BC. Survival rates are going up, now down, so timescales and life expectancy are so difficult to put an accurate figure on and I don't think it helps the patient at all, unless of course they want to know. I agree that I don't expect to be here in my 80s so my own expectations have changed so much and that is the part that takes time to adjust to, and where the grievingq comes in. Be easy on yourselves and take time to adjust.
To all non-newbies, hope your day is bright, even if the weather isn't! Btw I love the BBC weather app, it's so accurate. I was wondering about hanging out some washing this mornining, checked the app and it said it would rain at 9 am - and it has, bang on 9 am ☔️☔️☔️ Not so good for the washing but great for real time forecasting!
Nicky x

[aunico]

Hi guys just discovered this thread and would love to be part of the bony group! Three weeks since diagnosis, still coming to terms and thinking how to look after myself. Got residual weakness from bone breakdown in back but determined to beat that into submission!!!

Vicky

[rosie53]

Morning ladies, yet another glorious day here today 😎

Hope you are all keeping well, injection day for me today, iv timed it so I get them both done on the same day so I don't have to think about them for a month.

Lynn, glad your scan was better than you expeted, can't believe you have to wait 6 weeks for your results though, when I had to have one the other week  because of my shoulder pain I got the results the same day! If it's causing you more pain or worry get on the phone and push for your results even if it is just for peace of mind.

Take care ladies enjoy the sunshine, Janette xxxx 

[2catlady]

Lynn,glad everything went okay and you enjoyed your fish and chips. Good god 6 weeks to wait for results that is ridiculous !


Kitty cat, yes most of us hang out in cafe (it's a Cancer free zone) and have a laugh.
And the bone mets thread ,regardless of mets. Mine are lung.liver,bones chest nodes. So if I posted on each met thread I'd be all over the place.

Hugs,Helen xxxxx

[Lynnq]

Hello everyone and thanks for your support regarding my scan. It wasn't as bad as the last one. Before I had to lay face down an found it very uncomfy. This time I lay on my back, kept my eyes closed, recited the alphabet, counted, sang songs in my head etc. was a long 35 minutes but it is done now. My 'results' appt is not for 6 weeks.but I will ring BCN after two weeks. I am hoping that , because they were quick to get it all organised they will be quick to let me know the results!!
We opted for fish and chips because I didn't get out of the hospital until after 7.00 pm...but they were lovely and hot, freshly cooked and very nice....
Hope eryone has a lovely day

Xx

[Lynnq]

Hi Kittycat. Yes this is where we boney ladies congregate and we also visit the cyber cafe for some fun. See you're a night owl as well....hope you managed to get off to sleep

Xx

[Lynnq]

Hi Beth and secondtime - i know that you would rarher not be here but a warm welcome anyway. Beth I know how you feel with thst initial struggle. I was diagnosed bone mets and spread to peritoneal area and skin straight away. However hormone therapy has kept me stable since Dx over two years ago.

Both of you will receive lots of help, info and support from these forums as have I And many others..

I was dx at the same time as i retired from work and having always been fit and healthy was looking forward to a long and active retirement. We cancelled so many of our plans, however some of them have been reinstated, have had a couple of fab. holidays in the USA and planning another. Life will go on when you find you 'new normal'

Xxx

[kittycat40]

Bit of a silly question but is this the bone mets thread where all the regular ladies with any mets chat? I have posted a few times on the forum over the last 7/8 years but usually in reply to a question or to start a new thread.

As some of you might know, I have bone mets, pleural effusion and liver mets. Had 2 cycles of Cape but my markers keep rising (19 in February and now 146). Having scan end of June to see what is happening. Onc says may need bone scan in case there is more bone mets. I am hoping to have liver biopsy ( as rec by Nicky....thank you!) to see if status has changed as not responding to hormone treatments. If I can be of any help to anyone please shout up! Take it easy everyone xx

[Orse1970]

Hi Beth and 2ndtime,

I am only just infront of you in the secondary dx route.... And I honestly don't think there is much I can add to the replies and support you have had from the wonderful ladies on this forum.. They have supported me over the last few mths...
I think one of the first things us newbie secondaries ladies ask is how long?? But I now think it's one of the last things that we need to know...

The ladies on here are right, no one can poss predict how long we have, how the treatments will work on us or even if during the course of our disease the researchers find the cure for this cruel illness and its that uncertainty that I find hardest part...

Beth... I too have two young children .. Two boys aged 9 and 11.. My oncologist has given my life expectancy as less than you, but I'm not listening to her.. She can't know.. And my boys deserve to live a normal life,., which they wouldn't if their mommy believed she was dying...

I hope that this doesn't come across as a rant!?! I'm still very raw myself,,, but you do get the strength to fight and live on - semi-normal life!!

I wish you both all the best, be kind to yourselves and give yourself time...

The ladies on this forum are lovely and supportive and will help in anyway they can..

C xx

[Chocolates]

Hello ladies and a huge warm welcome to our newbie's. We are so sorry you've had to join us but you will be very well supported here. To put it bluntly we are a bit mad but we are an extremely strong unit who celebrate the good news and hold hands for the bad. You can ask absolutely anything, rant, shout, scream - we will be here.
Lynn - how are you doing? Hope the scan was bearable and you had a lovely meal after. Any idea when you might get the results xxx
Hi everyone else - lovely day here - although was working so didn't really enjoy it.

Busy with treatment tomorrow and things over the weekend but will post on Sunday. Have a good weekend xxx

[springsummer]

hi second time and duck girl.  i asm sorry you have both been diagnosed with seondaries but i would just like to say what all the other ladies have said. i was diagnosed with secondaries to liver 4 years ago and thought i would be dead in 2 years time. 4 years later I am still fit and well, working full time in a demanding job. It has not all been easy going and I have gone through dark patches when I have been very afraid. But I never thought that, 4 years after diagnosis, I would feel so well. ( i have secondaries to liver, bones and lungs now).  I am on an experimental trial with a drug called parp inhibitors. I saw the Onc last week and he said  he was not worried about me as there are so many new drugs coming up now and the future looks promising.  So, it is  scary and horrible but it is not nearly as bad as i thought it would be. Much love going your way  SS

[belinda]

Don't know about the wise bit!

[Marie123]

well said our wise matriarch xxx

[belinda]

I have always found this quote helpful, taken from a now out of print American book on Living with Breast Cancer Secondaries,
''Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.''

[duckgirl73]

Thank you everyone. I think I have been thinking about the future too much and having the onc say 5 years was a big shock. even though she did say no one really knows. I would love to live until the children are into adulthood which is another 9 years. Here's hoping that I do. I think I have been thinking about everyone's life going on without me (including my husband) and I am definitely griefing for a life that I thought I would be leading well into my 80s. It seems like a tough disease as you never know how long you will live for. I guess I can just hope for the best and try to move on from thinking about the future too much. Big hugs xxxxx

[2catlady]

Oh,Beth,so sorry you are joining us. We all understand how you are feeling. Don't look at time lines,Belinda is right set your self targets and this helps get you through. Nobody can say how long you have,not even your onc. Our Belinda 12years and going strong.( she's like our matriach,but don't tell her I said that) she has a wealth of experience.xxx

Hi,2nd time,
I've only had cap the oral chemo and now I'm on Eribulin as I had double whammy diagnosis. I was terrified about starting chemo too. Try not to worry about it as you do get lots of help with any side effects and its the fear of the unknown. The ladies will give you advice and tips and its not as bad as you think xxx

Just remember ladies we are all here for you and each other xxxxx huge hugs,Helen xxxxx

[LemonDrizzle]

Welcome Beth. You will find lots of advice from the ladies on here who have a wealth of experience between them. We all understand exactly how you feel and will answer any questions you have. My onc has never given me a time frame although the surgeon who broke the news of my double whammy diagnosis to me in March last year scared the life out of me by saying I'd have 2 years max. We're all different and respond to treatment differently too, so I've moved from taking things on a day to day basis to planning things for a few months in advance now. In time, you'll move forward too, but I'm still an ostrich at times!
LD x

[Marie123]

As far as I understand it no one can say how long a treatment will work, or what is coming through from research. No one and I'm not just talking about sbc  knows what lies ahead. Don't be too hard on yourself, grab the good days. We all have the Mad cancer days , but they do pass. Please grab a glass and all newbies please join us in our  cyber cafe. I know its only thursday , but I'm declaring the start of the weekend. Oh no Chocolates has got the microphone, HELEN PLEASE HELP ME.

Marie xxxx

[belinda]

Just adding the link to this PDF from ladies with mets in Australia, it's, I think, a good read, useful, I hope, if newly diagnosed, I have posted this before a few times, sorry, this is the newer version.
https://www.bcna.org.au/sites/default/files/hh_messageofhope.pdf

[rosie53]

Hi Beth, really sorry to hear about your dx, but I want to welcome you to the forum, we are a friendly bunch and a huge support to each other. Like you I had never heard of mets til I was dx with them last year...huge shock!! With regards to your doctor saying that you are looking at 5yrs I really would not read too much into this, every one of us are individual and no one truly knows, my onc has never said anything to me about my prognosis. There are ladies on here who are 10yr plus from secondary dx.

Take time to absorb things Beth and try not to let your mind wonder to far ahead.

Hugs Janette xxxxxxx 

[belinda]

Hi 2ndtimeunlucky and Beth, it's a shame, I think, when you are given a timeline. My Onc only said yes it's not curable BUT it is very treatable. Since then the Onc has expressed surprise at times when a treatment has worked for much longer than the usual expected time. If you possibly can try and get passed the idea of you having five years left. Who knows what may happen next year, the year after. It's so hard with little ones too, luckily mine was older but if in your head you can allow yourself to look forward, make plans, little treats ahead. Next month, Spring, Christmas. Presenting with a fractured hip due to breast cancer and bone mets twelve years ago I would not have dreamed I would still be here. I am still getting my head around it all so please be kind to yourselves ladies. XX

[duckgirl73]

hello 2ndtimeunlucky, if you are new to the diagnosis I can understand your shock. I didn't even know about mets until 8 weeks ago. I hope you are managing okay. sending hugs xxx

[duckgirl73]

Hello, I just wonder how long it takes for people who have been living with mets to get over the diagnosis and get on with living their lives? I am finding it very difficult as my kids are so young and the onc said she hoped I would live for 5 years. That seems like too little time. How did everyone manage to cope with their original diagnosis? Beth xx

[2ndtimeunlucky]

Hi Beth, Im new this too, well not to Breast Cancer, which was all clear until now, im now in secondary 4 and 1/2 years later, in my bones, liver and lungs. Im still trying to get my head around it all. Im 42 (almost 43) and other than a cough feel as healthy as I could be. My thread earlier, Im glad I have found this forum as I think it is going to help over the next few months. Much Love. xxx

[2ndtimeunlucky]

Thanks Nicky. I am so glad I have joined this Forum. I am confident and always try to remain positive but sometimes google and other stories from people (not from people who are ging through it) actually scare the sh1t out of me ! I look forward to a fun summer with you lot xxx

[duckgirl73]

I think I have got the correct link? I was recently diagnosed with breast cancer 10 weeks ago and the following the routine scan found out I had secondaries in my bones. I've since had a corpectomy and a hipe replacement. I still have 2 broken vertebra so I am in the brace for the foreseeable future. I am 41 and a mother of two beautiful children who are 9 and 11. I am struggling to come to terms with the diagnosis and to move on and start to lead a normal life. My cancer doctor says I should live for 5 years but I think it is the uncertainty of life span which is awful and also being a mum to such beautiful children. I feel like I am currently mourning my life, as I always thought I would be with my husband until well into my 80s. I just wondered how people learn to cope with the diagnosis. I have always been a very positive and happy person but I guess I am struggling with this situation. I hope this is the corrrect thread for the bone mets. Thanks, Beth

[2ndtimeunlucky]

Thanks all for your replies.  Its been a bit of a rollercoaster week.  Lots of hospital visits and a full bone scan done on Monday, just waiting now for the results of that.  Kinda scared at Chemo too as I didnt go through that last time.  Sooner the better though for it to start.  I hope to be on here lots and share the experience and be good to chat to people in the same but unfortunate situtation.  The sun is shining today, long may it continue xxx

[nicky08]

Hi ladies
Helen44, great news and hope you are recovering from the SEs of Tax, takes a while but you will get there. Regarding this and another post I'd recommend Eurotunnel insurance for travel, it's very reasonable, probably the best priced around, no awkward questions and the excess is very low should any claim be needed. I'll bump up the thread. Also it may be worth you applying for ESA as well, allowances are made when people have to reduce their hours because of their medical condition. It is means tested but also takes into account whether your NHI contributions are up to date, which yours will be. Enjoy. France and don't make a spectacle of yourself with those men in Lycra 🚵🚴🇫🇷
Welcome KAm80/Katie, sorry you are joining us. I can't see your original post so don't have any specific things to add to other than they you will find support, advice and a few laughs on here should you need any lf those.
2ndtimeunlucky, sorry you are having to join us as well, none of us want to be here but we are, as we've said, a very supportive group of knowledgeable ladies. I can't see on here where your mets are but I think you've mentioned them on another thread. Although the chemo is 'palliative' this word is only used in the medical context of being 'incurable' Many if us ladies have had palliative chemo, mine started 7 years ago! I initially had FEC chemo when my bone mets were diagnosed, then had 4-5 years of hormone tablets, then oral chemo and then another IV chemo last year when I also started Herceptin type treatment as my receptor status has changed from my original diagnosis. There are many treatments out there and at least one of us on here would have had the same as you so do ask away or check out the Treatments part of this secondaries section. Any question is not a stupid one, I have learnt so much from the knowledge shared on this forum so it's also worth reading any of the treads that are appropriate to your mets, even if some are soooooo long 😄
Hi to all other mets ladies, hope I've not missed anyone's news or questions out. Edwina, I hope you weren't too upset at your appointment time yesterday. None of us want to see ladies upset after an oncology appointment but it could be they had only just been diagnosed with primary BC and that's bad enough in itself let alone worse news of secondaries etc
Take care all
Nicky x

[2catlady]

So sorry Lynn,I've just read your post. It's good news your gp and onc are on the ball and proactive.

Mine never even found the ball. Dreadful pain before March and just getting CT next week.
Lynn,the cervical part of spine never rests as its holding head up and moving all the time.the thoracic parts the same as we have to breath,so it could be wear and tear.
Glad they are checking you out for you. MRI are awful,it's the noise so annoying!

Lynn,I started off on only 10 mg of Amitriptyline and it keeps going up each week until I find a dose that helps,on 60 mg now. So have a try on a higher dose.
Huge gentle hugs,Helen xxxxxxx

[KAM80]

Thanks so much Belinda x Since being rediagnosed last summer with bone and brain mets I have taken such inspiration and comfort from all of the amazing ladies on this forum. Thank you again, Kate x

[belinda]

Hope your appointment went well Edwina.
X
Enjoy Le Tour Helen, glad all seems good.
X

[edwina64]

Hi everyone I went for my routine appointment with my onc yesterday. Whilst I was waiting to go in I saw several ladies wiping away tears as they came out. By the time I went in I was feeling very sad for them and all of us. This  week there has been a lot of positive news about cancer,a new radiotherapy  bullet treatment,  immune therpy treatment and  breast cancet treatment to stop metastases.  This probably won't  help me but maybe will help our daughters or grandaughters so trying to be poditive now.Cancer is a bummer though!

[belinda]

Hi KAM80, Kate, so sorry you have to join us but this is a very supportive place. X

[rosie53]

Hi 2ndtimeunlucky, sorry you have had to join us but you are very welcome. Im similar to you, i was 38 when dx with primary and had lumpectomy, radio and put on tamoxifen, my mets were discovered last March in my bones and was devastated. Feeling a lot more positive now, please take time to absorb your dx, we are always on hand to give support and info
hugs Janette x x

[JulieD]

Lynn,

I can understand your worry, it's only natural. It sounds like your medical team are being very watchful and proactive which is good, though a bit scary for us. As the others have said, try not to read too much into it, it could be something completely unrelated to cancer. I know it's imposible not to worry, when I'm in such situations I try to prepare for the worst but hope for the best, if that makes sense. Will be thinking of you and sending positive vibes for a good result xx

[JulieD]

Hi 2ndtimeunlucky,

Sorry you are having to join us but welcome to the thread. You are bound to be feeling scared and overwhelmed at the moment, there's a lot to take on board and try to assimilate and deal with. It does get easier and most of us find that once we have our treatment plan and it's underway we start to feel a little less anxious as there is something being done. You've had a tough time, and this is a big shock so try to be gentle with yourself and come and talk to us whenever you want xx

[Marie123]

Hi Lynn, thanks for all the pm help. so sorry to hear about your pain, hope it gets sorted asasp.

Take care Marie xxx