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Bone mets - please join in

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Oh Carolyn - so sorry - it always happens at the very worst time, doesn't it! I do hope you get sorted without pain. Let us know how you got on.

 

Hugs, and thinking of you! Barton.x

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Oh great ...happy Xmas to me ..just lost a filling from my front tooth ..it's huge hole and sharp. My dentist is closed for Xmas ..emergency dentist ..ha ha ..no answer so found a private dentist who is going to see me this afternoon. But being on denosumab means I think no injection or drilling so hopefully just a replacement filling ..I hate dentist work as I have old worn out teeth anyway . ( dentistry in 50s and 60s was very basic)
Hugs xx
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Just saw the posts about Ellie..lost for words. I didnt realise she was so young and what an awful time of year for her and her family for this to happen. Her little boy will grow up knowing he had a wonderful, courageous and beutiful mummy, i'm sure. Thank you Carolyn for passing on our thought and prayers. God bless Ellie.xx

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Thanks Carolyn, I'm sure that in the weeks to come the knowledge that Ellie was a valued forum member and her friends here are thinking of him and the family will help him a little

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Thanks for doing that, Carolyn - a good idea. I know it will be of little comfort now, but, hopefully, if he looks back in the future, it will bring some comfort to know how fond of her we all were.

 

Hugs to all. Barton.x

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We are so sad to hear about Ellie. To those who knew her well from the forum, please accept our sincere condolences and thank you Carolyn52 for reaching out to her husband.

 

 

Best wishes,

Bonita

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Carolyn, Thanks for doing that! I think it was very thoughtful of you! FF

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Hello ladies
I have just texted Ellies hubby and passed on kind regards from everyone . Not sure if it was the right thing to do but thought it might just help that we are supporting him at this awful time.
Carolyn xxxx
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Oh how sad, sad, sad - I didn't 'know' her very well but so sorry for those who loved her.

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Such sad, sad news, especially in one so young. Thinking of her young family and everyone who knew her.

Nicky x

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Oh, no! So sorry to hear about Elliexxx

Moijan💚💚💚

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Yes, thinking of Ellie now.......just before Xmas. Her little boy will have to be brave, and remember always how much his mummy loved him. She'll keep an eye on him I know.

 

mo

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Ellie was way to young and with a little one and so close to Christmas! Too sad, wish she could have had this Christmas with him!  FF

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Hi everyone, my thoughts are with Ellie's family at this difficult time xxxx

I have seen Onc today and in a nutshell , the Chemo is not working and depleting platelets . So I am starting on Capectibine Chemo tablets . Feel happier seeing him and trying not to worry. Starting with half strength first and reviewed in 7 days. Then will increase if it is having any effect. So need to be careful of any bumps etc.

Just have to keep fighting this xxx

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Hallo Corey Good to hear from you, glad you've finished chemo. I think pet scans like bone scans show up abnormalities no matter what sort, then they investigate what they are, if they can! Hope you and your family have a good Christmas.  B xx

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Joining Carolyn in saying how sorry I am about dear Ellie. We shall really miss her. I have posted in the Dedications thread, too. She was so worried about leaving her son. Our thoughts are with her family.

 

Hugs. Barton.x

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Hello Corey, so glad to hear you are beginning to feel better after your FEC-T chemos. I remember how totally wiped out I was afterwards! I hope the radio treats you gently in January. So nice to hear from you!

 

Hugs. Barton.x

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So sad to hear about Eliie and thinking about her family.

B xxx

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Thank you Carolyn for letting us know about Ellie. So so sad and so young too! Will say a little prayer for her family.
Hugs Janette xxx
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Hiya Corey
How nice to hear from you ..every time I go to my sister's in bude ..I think of you as we drive through holsworthy .
Now, hope I'm remembering what oncologist said correctly but bone scans and ct scans highlight " problem"areas are not always bone Mets but arthritus or old injuries and damage. They are treating you with great care and it sounds if oncologist is really on the ball.
Carolyn xxx
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Very sad news  about Ellie, remembering her in my prayers.

 

Thanks Carolyn however it was help with low White Blood Cell count I was after.

 

M xxx

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Hello everyone,well its 2 weeks ago today that ive finished chemo 6 cycles of fec-t . starting to feel better and glad its finished. im having radiotherapy early january for three weeks this is to the breast and sacrum. had ct planning for this and when i saw my oncologist he said that i was still clear everywhere else. i was wondering if its unusual to only have one bone met. from the beginning my surgeon said what ever it is on my sacrum it didnt resemble cancer and it had no relation to the breast,but because it highlighted on the ct pet scan they are treating it as secondary. oncologist said they cant do a biopsy because its to dangerous (why do they biospy if it highlights?)i had a bad fall a long time ago and we were convinced that this is what it was as i fell on the bottom on my spine, can old injuries highlight. all this goes through my head anyway sorry to ramble on i hope everyone can enjoy christmas .my children are all wired to the moon and thats before theyve had chocolates. love to everyone.xx

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Have just seen your post about Ellie - way too young, feel very sad and hope that her family are being supported at this difficult time. Xxx
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Hello ladies
Feeling so sad today at hearing that lovely Ellie ( EJ81) has passed away as Barton and I met her regularly for coffee. This disease is so cruel and at this time of year too. She was 35 and a doting mum to her five year old son.
Let's all think of all the lovely ladies we have lost this year and pray for the magic bullet pill soon to make cancer a thing of the past.
Carolyn xxxxx
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Hello Marie
Nice to c u posting and sorry you are not feeling well ..the drug you are on is now a withdrawn one from the drugs fund so there is not many ladies here that will be able to give u much help.
Enjoy a relaxing Xmas if you can.
Hugs xxxx
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Hello everryone,

 

Just want to wish everyone a happy and hopefully pain free  Christmas.

 

Also would like some advice.Have not been too well lately with one infection after another. It was discovered that my WBC was low 0.7 so Everolimus was stopped for a week for count to improve . It went up to 1.1 and onc allowed me back on Everolimis.

 

Question, feeling absolutely shattered, has anyone else had this ? What can I do  apart from avoiding infection ?

 

Finally , hope next year is a good year for all.

 

 

Marie xxxx

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Hi Racer Hope you get some more definitive answers today, uncertainty is very wearing.

 

Have been managing to go for a few walks recently to blow the cobwebs away - feet have stopped hurting, weather not too bad. However denosumab today and storms tomorrow - less of the great outdoors for a bit.

 

 

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Hello everyone and hello to Catherine. I went to see my Oncologist yesterday and said my platelets were 28 on Thursday and increased to 31 on Friday . He said they had dropped to 30 yesterday . Oncologist said they have a dilemma to whether give me Chemo or not. iIt could be either the disease or the Chemo that is ldepleting the platelets. The Onc could not really give me any answers so felt really rubbish after.

So my Hubby not happy and we have made an appt with the Professor who is above him tomorrow. Making a list of questions and want to know the plan. Think sometimes Oncologists forget that you are living with this and have to deal with what/how they tell you things. So trying not to worry. It might be awkward tomorrow as Oncologist I saw yesterday is in clinic . But if it means us getting some answers it will be worth it .

Ff like your snowy pictures. Really Christmassy . Think we are all the same that the cold plays havoc with painful hips etc . Stay in the warm.

Cannot believe a few more days and back to normal . Kids are very excited just glad my hubby as managed to swap his shift Christmas Eve night.. he has had to work the last two years and I have worn myself out trying to get everything done. Already told the kids it is a pj day in Christmas Day so we can relax . No visitors apart from Santa .

Hopefully I will have some answers tomorrow . Positive vibes. Take care everyone and don't overdo it xxxx

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hi Babsy, thanks for the info about Yes to Life. I will look it up but will probably be after Christmas now...it suddenly seems to be creeping up very fast.

FF....there arent any scans that pick skin mets up so its all done on clinical observation. I am due a scan early Jan which will check everything else but its just a waiting game, as usual.

was interested to read all your comments on itching as this has recently happened to me...all over. I assumed it was to do with the progression bt really dont know. i remember my mum always complained about constant itching and we gor her dermacare cream, hemp butter etc but dont think anything helped much. always worrys me when i get things she did as it was this awful disease that killed her.....still, will try to rein in my dark thoughts.

Racer, sorry to hear you are having a rbbish time. hope things are a litle more settled for you now.

Bel, welcome to 'our family'....best place for loads of support.

Catherine, sorry to hear your news but hopefully we will be able to offer help and support. I to am triple neg and have skin,pleural and bone mets so will keep an eye on your posts.

Bandit thanks for the bestbird info..will have a look at it after christmas.Glad to hear you are partying well.

Love to all. xx

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Hello ladies
Very interesting about the sickness thing ..just thought it was my bad eating habits! I have to eat really basic stuff and rennies are my best friend.
I find crumpets and butter very helpful and those little yoghalt bottles good.
Hadn't thought of it as a calcium deficiency though ...thanks for the info.
Hugs xxx
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Thanks Lynn, I've just left a message for bcn to give me a call. I'm like you, felt a silly questioning it but it's kept me awake most of the night and feel really rotten this morning. I haven't taken my Adcal today yet in case that makes it worse!
Janette xx
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Good morning Janette. I suffer from nausea on and off like you. When I first saw GP about it, over a year ago it had been pretty constant for a month or so she gave me some anti sickness pills - domperidone - which ease it, but only take them when It gets really bad. She also ordered some blood tests for me which all came back okay apart from a Vit D deficiency - even though at the time I was taking adcal. She prescribed some 'booster' vit D. I no longer take Adcal or calcium supplements but still often have nausea -maybe speak to your GP or maybe BCN. I told her that I felt a bit silly just telling her that I feint sick, but she was very good and she understood that it can be quite debilitating. I also find that if I have something to eat it helps Hope everyone is as well as they can be and ready for Christmas.
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Good morning Janette. I suffer from nausea on and off like you. When I first saw GP about it, over a year ago it had been pretty constant for a month or so she gave me some anti sickness pills - domperidone - which ease it, but only take them when It gets really bad. She also ordered some blood tests for me which all came back okay apart from a Vit D deficiency - even though at the time I was taking adcal.
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Good morning ladies, hope you're all keeping well and are ready for the festivities!
Just got a quick question, does anyone suffer from nausea? Just lately I have been getting it quite a lot on and off, just feeling really sick, I'm sure at some point i have read that calcium can play a part in this????
Hugs Janette xxx
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Bonariensis, Lol Yes I live out in the "sticks" as they call it here! There are 3 houses at the bottom if the lane. To the left of the drive is 9 acres of woods, to the right the neighbor at the bottom has 4 acres, we have 2 acres. We don't have much area in grass. We are on the north side of the hill, so not enough sun for most plants. Plus the deer love to munch on the plants. I can't see any neighbors from my house. When we first built it and moved in I was a stay at home mom with no car! No car, no neighbors, and you can't walk anywhere you would get run over. I told hubby the trees were starting to talk. I grew up in town, with neighbors, walks, stores and street lights! It's dark here at night. I told him I needed a car that I didn't care how old just so I could get out of here sometimes! It was a big adjustment.

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Funnyface Good to see some pictures of your home. I used to like snow but have gone off it recently. Your house looks like it's out in the wilds but maybe you've just got a big garden (yard)? -Two nations divided by a common language! B xx

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Carolyn, I work at the senior center and even the seniors with canes are faster than me! I really think I've done too much sitting around with these knees! 

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FF. .know what u mean about slow and knees ..I walk with a stick..slowly. we have neighbours in their mid 80s ..walk their dog 3/4 times a day ..not a walking stick in sight !!
We downsized to a house on the flat and nearby to shops for our old age ..18 months ago. Best thing we ever did.
Hugs xxx
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Oh, I'm not active and fit! That's the problem. My knees can't take the uneven turf of the wood a! I so of never be able to walk up that drive! I walk slower than most elderly people.  I get out of my car in a parking lot and people in their 80's pass me and are in the store in half the time. I really need to push myself this summer to improve walking! Our house is modest for this area. Most of the homes are a lot bigger and fancier. I would truly like to move in town. I love it out here in the sticks, but too much work.

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Omg FF ..that driveway needs constant maintenance by the looks of it. Thanks for sharing ...it looks like a real winter wonderland like the US Xmas films I have been watching.
Our house is much more humble ..in the town with about 50 foot front garden and the same at the back. Plenty though to keep hubby busy!!
No wonder you are always so active and fit.
Hugs xxx
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Carolyn, The driveway picture with the plow showing is looking up our drive. The house is at the top. The other shot is taken from the same spot but looking down the rest of it. That was snow on the drive that turned to an ice slab all the way from the top. The drive is stone so when you plow you always have snow left. This compacts and  then and turns to ice in a few days. We have to go get stone from the quarry and sprinkle the whole drive to get the oil truck in. FF

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Carolyn, We have a GO, but can't use it bc it's not finished. Hubby built our house and we ran out of funds. DO is still cement block waiting for stone. We have never come up with he funds to finish it. Needs stone and hearth. I keep trying to convince hubby to dry wall it in, make a nice hearth and mantle. Haven't mentioned it for awhile, but maybe I should try again. We have oil heat and also a coal stove in basement. If we spread our heating costs throughout the year it covers about $200 a month to heat the house. It is a single 4 bedroom house with a finished basement. It's fairly large for 2 people! Except when we are on each other's nerves! I would like to down size and get something smaller and easier to maintain. Our driveway is difficult!

FB_IMG_1476151397573.jpgFB_IMG_1476151894484.jpg

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Hiya FF
Phew that's cold ....don't know how u cope with snow and freezing rain. I live down in the s west in UK so we don't get much snow or cold really. Your electric bills must be huge ..no log fire ?
I'm watching Xmas movies afternoons and most of them are US ones and always feature huge log fires and snow so will be thinking of you.
I've just got to get Xmas food this week but out on Xmas day so no slaving over a hot stove for this one !! Pressys wrapped and just a few more last minute things ordered online to be delivered next week.
So ho ho ho everyone .🎅
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Haha Caroline yes it is a big doc & can certainly wait until the New Year.

Nicky agree with you.  12 years ago the HER status was never mentioned to me and it was only when there was so much press coverage re Herceptin that I phoned my surgeon and asked for my lump to be tested.  I had a bone biopsy when I was dx MBC recently and had an anognizing wait to find out if status had changed which in my case it hadn't but it shows how things are moving on quickly. Just had a lovely walk across the fields with my dogs a 16 year old Border Collie Bella & a 18 month old Wolfdog - yes he really does have Wolf in him.  Bandit xx

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Good morning ladies! I'm on the lighter side of conversation today! It's 7AM here and I'm hanging out in my PJ's. Quite cold for Dec. It is 25F out today. We had a little  snow and now freezing rain! The last two days was bitter. It was 12F which when I converted it that's  -11.11C!  I finished my shopping yesterday except 2 things. We were completely in the opposite direction, got home at rush hour, my knees were killing me, and I couldnt take any more cold. The 2 places I needed t  go to were in an area that's crazy with traffic at that time and would have been worse on a Friday night, with snow and Christmas on the way. These 2 places are 5 mins from where I work so I will go there on Monday when it's not so crazy! Cookies are made, house is decorated, cards sent, now for wrapping or maybe some rapping too. Then the cleaning!  Hoping the electric stays on with the ice!  Have a great day! FF

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Hi Bandit. I agree about having knowledge - it gives us back some of the control that we crave after this SBC diagnosis has robbed us! I just wanted to point out to any newbies that not all drugs available in the USA are routine in the UK. However it's always good to know what is out there, hopefully the drugs will then become more mainstream as Herceptin did all those years go and now Pertuzamab (which is now available having been on the CDF list for ages). I have always researched as much as possible but initially there is so much information to try and absorb you don't really know what is right for you. Having said that I have been living with SBC now for over 8 years so I've had plenty of time to learn! This forum though has been a real source of good, non-scary information about treatment. I only learnt from here that your receptor status can change which is why I  asked for a liver biopsy in 2013 and found out that after 10 years of being HER2- I am now HER2+. No one else even mentioned it, even my onc was surprised that it had changed but it did mean I moved on to more targeted treament. I definitely challenge my oncologist about his decisions, something he's had to get used to - poor man - and have sought second opinions to back up what I've learnt or to confirm I'm on the right treatment.  All things we could and should do if in doubt.

Enjoy the wrapping - and rapping 😊🎁🎤

Nicky x

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Hi Nicky. Good point you make about the Bestbird document being USA based however it gives lots of information about the different types of MBC and the drugs that are available most of which are NICE approved.  However the drug I am on is not yet approved in the UK and therefore I am on a trial but I think it is  good to know what is out there or in the pipeline.  For us new to this there is so much to take in and we don't always know the questions to ask or have an Onc who is as clued up as we hope they are.  I remember the fight that was put up to get Herceptin approved in the UK and what a difference that has made to lots of the HER + ladies.  I have been extraordinary lucky to have 3 great Oncs involved and put onto a trial for my ER+ HER - type of breast cancer but this document is useful and FREE.  If you decide to download it and have a look through I would be very interested in your thoughts.  I don't know a single MBC lady (lots of friends with BC) and the forums and this document I think are wonderful places to gain info and support.  As we know if or when the drugs we are on stop working there are lots of others to try and I just want to have the knowledge to be part of the process working with the Oncs as to what I might be next prescribed.  Hope you and everyone else have a great day.  I shall spend the morning wrapping or maybe rapping.  Bandit xx

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Hello bandit
I too got the guide from bestbird on inspire ..but must confess I haven't got round to reading it yet as its 100 pages long and I haven't got a printer !! just make sure that if you download you have plenty of memory space if you do it to a phone or tablet.
Note to self : read it in the new year !!!
Hugs xxx
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Morning ladies.

Racer, great news that your platelets count us on the up and you are not sitting on a hospital ward this weekend. Much better to be at home and fingers crossed your onc has some positive news next week when you see him.

Bandit - well done you! If you feel good why not get out there and have some fun - I do whenever I can. I'm sure you know to pace yourself so you don't suffer afterwards either with aches and pains from the SBC or a hangover if you over do it!

Bel - quite a few of us get PIP, through the DS1500 route and it definitely helps with the financial worries. Because you get this you should be accepted to get the support group ESA also. If you have paid your NHI contributions (and there is a means tested route as well) it is paid if you have had to stop work, or reduce your hours, due to treatments you are on. Although it is for any primary cancer patients on chemo and/or rads (amongst other sickness related conditions) to help them there is a long term element for those of us on constant treatment once we have secondaries. Worth a look.

Welcome Catherine to our friendly group of ladies. We are here for support, advice, a place to rant and to have a giggle at times. It will of course be a huge shock that your BC has come back and there will be a lot of info to take on board. I think all of us found it easier to cope once we had a treatment plan in place. Ask away with any questions you have and there is a Triple Negatives thread on here which is more specific about types of treatment available.

A question about the document relating to treatment options, is this from the US? If it is it's worth noting that all treatments are available there (providing the patient is paying for health cover) whereas in the UK some drugs are not funded through the NHS (although are generally available if you do have excellent private health insurance). Also a list might show everything that can be used for SBC however depending on the type of SBC you have only some of them will be approved for that type of SBC.

Nicky x

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Welcome Catherine! There is a bunch of lovely ladies hanging out here. It's a great place for support and a wealth of information. It is very scary in the beginning, but hopefully you will feel better when you get a treatment underway. FF