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Hello everyone!

39 REPLIES 39
Carolyn52
Member

Re: Hello everyone!

Hiya welcome Marie.
You will find a lot of help and support here and keep reading the board threads for answers to your problems
Hugs xx
Rose47
Member

Re: Hello everyone!

Hi

I am new to this forum recently diagnosed with primary and secondary (hip and liver) and after reading the posts in this thread wondered how everyone is getting on with treatments?  I am currently having Fec .

 

I went to the doctors after feeling a lump in the bath New Year's Eve.  The doctor said she couldn't feel anything but I was referred.

 

diagnosed with PVC and then 2 weeks later after a scan diagnosed with hip and liver.

 

With love and hugs

Maria xx 

 

ps PVC is meant to say p b c  (auto correct at its best !!)

Carolyn52
Member

Re: Hello everyone!

Yes after 2nd denusumab felt really achy for five days but better now. So want to be able to tolerate them as my poor bones need all the help they can get!
Hugs xxx
Deedeepuss
Member

Re: Hello everyone!

Hi Carolyn

How are you doing after your 2nd Denosumab?

Xxx
Deedeepuss
Member

Re: Hello everyone!

Hi Carolyn, I have my 12 Denosumab tomorrow, and not going too bad on it. Went through a few cycles where I was wiped out on day 4/5 but that's not happening now. Right elbow pains, but that may not be related. My bone lets on CT have been v positive since I've been on it, take care x
Carolyn52
Member

Re: Hello everyone!

Hi pussy. just back reading your post on January 21st and I have just have had my 2nd denosumab injection and phew I ache and the pain has increased. Does it get better as you are ahead on the injections ? The ache seem to kick in on day 4 /5. I was fine After the 1st one too. They say its very easyto tolerate but I could do without the aches in places I have never had before!!
Hugs xxx
emmy
Member

Re: Hello everyone!

BJH I was surprised mine wasn't taken seriously back in Oct and was told I had a torn Trapezia so take the paracetamols and heat pads. It got worse I would cry getting up and hubby said enough we will see the doc who was surprisingly helpful organised bloods and pain relief as I had an ulcer years ago so can only have certain meds. Eventually had an app with the onc who found another lump on my collar bone, sadly they have come back with lower right side a tumour on my sternum which is growing and hurts like hell and I also have a tumour on shoulder which they hope chemo will reduce so off Friday to have pic line then start chemo Wed 19th so at least we are starting. I haven't heard if anyone else with it on the sternum? Interesting hmmmm. xxx

BJH
Member

Re: Hello everyone!

Hi Carolyn.  Sorry you have had to join our elite group but hope you feel very welcome and you get the support you need. 

 

  I know how frustrated you must feel as I was treat for almost 8 months with a pulled muscle when all along it was secondary breast cancer in my sternum.   Now any new pain we have to make sure that the doc knows we have SBC.  Although I believe most have scans every 3-6 months.

 

 Will be having more chemo or rads ?  X

Carolyn52
Member

Re: Hello everyone!

Hello. I have just been accepted to this "elite group". I have been active on the other boards but thought I would introduce myself properly. 

I had my original BC in 2004 and went through the usual treatments - lumpectomy, rads and chemo and five years on Tamox/ Arimidex. I was then discharged after 5 years from hospital life and virtually forgot about bc and got on with my life. 

When I hit the ten year landmark - I decided to retire and move house and "enjoy " some time away from the 9 to 5 routine of office life. About a year ago I started getting hip pain and carried on swimming etc . I saw Doc and he thought it was a trapped nerve and game me some painkillers. I then went to a Chropractioner who treated me for a month for a trapped nerve which made things worse. I finally (my fault shouldnt have left things so long) went back to Docs who arranged for a x ray. Well I couldnt have been more shocked to hear that I had sec bone mets to hips, pelvis, spine and a hole in the femur which was quite weak. I had an emergency op in November to put a nail in the femur to strengthen it and try to stop it snapping. I have been on Letrozole, Adcal and Denosunmab since and hope that this will be sufficient to control things for a while. I have had a bone scan and ct scan but I dont know whether I have mets anywhere else and to be honest I think ignorance is bliss sometimes. 

Well thats basically my story and I shall read this forum with interest and also it saves me a fortune on online shopping which I was doing too much of before !!

Waffles
Member

Re: Hello everyone!

Hi Emmy,

Good to hear you have your pain under control. I hope all goes well for you tomorrow. Good luck with your scans.I hate going for appointments. I always have to wait for hours which is never very pleasant.

Your little dogs sound lovely.  A westie/yorkie cross sounds adorable but I can't imagine what she would look like.I don't have a dog at the moment but I used to have a gentle but very food obsessed whippet. I now have two house cats and I can't imagine life without them.

Let us know how things go tomorrow.

Best wishes xxx

emmy
Member

Re: Hello everyone!

You hit the nail on the head! The pain started back in Oct and it's only now I feel it's been taken seriously, I am somewhat uncomfortable with our local GP practice as there are no older doc's I trust the older ones have left and we now have mostly young ,new docs who I don't know and feel they thought I was being paranoid as I also have fibromyalgia which I started with long before cancer but just accepted the tired feeling putting it down to my age! There is a young GP who seems to be more clued into Fibro and still he was reluctant to give me something, I now know it's real as he phoned me last night to ask how he could help so I explained the onc thought I should try tramodol with paracetamol and anti sickness tabs which knocking on hairy wood (for now!) seem to help. I just want tomorrow to be over and then the pic line so I can get on with it all. I don't do waiting round very well but that is pretty well most people the waiting room is the pits! So fingers crossed for the nuclear scan on my bones and also for the heart scan in prep for the Herceptin.

Thank you for taking the time to reassure a novice to the SBC forum and reading through I like the thought of a discussion around interests, we have two little dogs one male westie who is both funny and naughty and a female westie/Yorkshire cross who was a rescue this little lady steals hearts wherever she goes from the scared shivering wreck to the very bouncy floozy she is now 😄  out kids are all grown with family of their own so these pests are a very loved part of our family . Many thanks and hugs all round xx

Waffles
Member

Re: Hello everyone!

Hi Janette, I know what you mean. I tried to manage on paracetamol and co-codamol for ages as could't take NSAIDs due to my hiatus hernia.I really didn't want to take moprhine as I felt this was for people who were in the final stages of cancer.However,I was getting pretty miserable and my doctor talked me round. I'm only on the smallest dose of long acting morphine (morphgesic) and I occasionally need short acting morphine for breakthrough pain. These do help but I think the rads to a large area of my pelvic bones,where most of my mets are,  helped me a lot too. I'm not pain free  but I' m a lot better than I was. I have a met at the top of my spine that's causing a a lot of niggles so I'm hoping some rads will sort that out too soon. Best wishes xx

rosie53
Member

Re: Hello everyone!

Hi Waffles, that's my biggest problem.....painkillers!  HATE taking them I feel like I'm "giving in to the disease" I take naproxen, paracetamol and occasionally amitriptyline at bedtime. I really get what you said about pain effecting your mental wellbeing because that is what really brings me down, as you say It's a constant reminder of the disease!!!

Hugs Janette xxxx 

Waffles
Member

Re: Hello everyone!

Hi Emmy and Miller,

I've found this site immensely helpful. My SBC was only diagnosed 7 months ago but recently I've been learning to live in the moment which really helps. ( It sounds like you are starting to do this already) I try to do things I enjoy as often as I can. Nothing fancy, just going to the cinema or a concert or watching a tv  programme I enjoy. I've also found that getting my pain under control has had a very positive effect on me mentally. If you are in pain you are constantly reminded of your illness. Don't be scared to ask for painkillers if you need them. I suffered in silence at the beginning and I was miserable. I think as your treatments start to kick in there is a good chance your pain will decrease too. Of course, everyone has bad days but it is possible to have good days too. When I was diagnosed at first I never thought that would be the case.

Best wishes to you both xx

emmy
Member

Re: Hello everyone!

Thank you for your kind reply, I am slowly getting my ducks in a row! First go round I focussed on the next treatment, test and tried not too think too far ahead. I am an upbeat sort of person as a rule though I couldn't believe how calmly I questioned the onc, I just didn't want that feeling of being slammed through the system and feeling empty. This time I am more than capable of checking things over and feeling a part of my own treatment. I was so scared that I would walk out and not remember a word!! Hubby was just as bad so I am taking the bull by the horns. I used to work with adults with learning difficulties to a mantra of not about me without me that's how I feel. Dreading the blasted chemo I was so tired only thing is hubby is now retired so we can support each other. Glad to have ladies who understand and have been reassuring that there is still life to be had thank you again Emmy xx

miller08
Member

Re: Hello everyone!

Thanks Julie for your response. Fortunately I am a very positive person and will tackle things head on. Its good to hear how well you are doing as it is uncertainty that holds me back from making decisions regarding long term plans. My husband and I are both retired and holidays were the top of our agenda. I was reluctant to book any more in advance but am already thinking I will contact the insurance company on my return from this holiday and check that I would still be covered if we had to cancel. Thanks again
miller08
Member

Re: Hello everyone!

Hi Emmy hope you are feeling a bit better for getting that off your chesr. It is so frustrating but as you say we will never know. I feel lucky my GP did listen when I was breathless even though I wouldnt have chosen SBC as the outcome. I had 6 sessions of Docetaxal and am having Herceptin injections. I have also just started hormone therapy. One good thing is my chemo fimished in time for me to come on.a planned holliday to Thailand. So I am currently laid in the sunshine writing this post. Sending you my vest wishes. Stay strong and positive.
JulieD
Community Champion

Re: Hello everyone!

Hi all, a special welcome to our new girls miller and emmy. Sorry you've had to join us but you will find understanding and support here.

 

Miller/emmy, it sounds like you both had trouble being listened to and I know that that is frustrating. I was going to my GP for a good 18 months complaining of pain in my back and side/ribs.Despite my BC history he didn't seem bothered, eventually agreeing to refer me to back clinic. However, I was being discharged from breast clinic (10 years after primary dx and all seeming well) BCN asked how I was and I said fine except for this pain - she organized scans straight away.....bone mets, spine, ribs, sacrum ...!! I do wish that the medics would listen more to us and have little alarm bells go off when they see bc women with pains. I'm not sure it necessarily made much difference in the end, and I'm doing well but it is so frustrating.

 

Just to give you a little hope in these scary first few months I want you to know that I'm now almost six years into my Secondary dx, Letrozole (Femera) has kept me more or less stable, I'm on Zometa too and have had some rads.

 

Best wishes to all xx

emmy
Member

Re: Hello everyone!

Hi all, I was on the forums quite a lot 2010 to 2013ish and then just gradually drifted on with life as you do. I had a grade 3 tumour on my right breast and had adjuvant chemo followed by two WLE then rads followed by Herceptin with five years on Arimidex. Back in Oct 2015 I got up with the most awful pain in my shoulder I couldn't even reach for a cup of tea then the pain sort of went towards my neck so I saw our on call GP to be told it was a torn Trapezia he said get hubby to massage it and use heat pads, it was a replief so I did as asked and the pain just got worse by this time it was down my chest our poor dogs couldn't understand why they couldn't jump up to sit on my lap (westie and westie/Yorkie rescue) so off I went once again by then it was getting to the end of November and no better I had to beg for pain relief as I couldn't have anti inflammatories so with great reluctance I was prescribed Tramodal which made me sick so I didn't take them. The pain didn't stop and I started with a lump at the top of my sternum which made the GP take notice with swelling on my collarbone was now very sore so he took bloods on 23rd Dec so everything was put on hold due to Xmas. I had my very last appointment booked for the 20th Jan so we decided to stick with that, my go away and enjoy the rest of your life app 😢 Sadly I was sent for CT scan which showed my right lung,neck and another lump under the swelling which can't be biopsied due to being close to major veins but my oncologist explained I need a head to foot scan to check the bones so that's happening this Wed . I am so shell shocked and am angry that my telling the doc almost two years ago that I got breathless which was brushed off and I felt like a complainer! I so wish I had kicked and screamed about it then, I asked onc if it would have made any difference he didn't seem to think so but I guess we will never know. Starting chemo probably next week it's going to be Herceptin,doxcetal and Prejeta of which I have for 6 months then Herceptin/Prejeta for life. So sorry to rabbit like this but I still can't get my head round it all. Not a gang I wanted to join but I am here so thank you for reading my tome and hello to you all, I hope to get to know you xx

miller08
Member

Re: Hello everyone!

Hello everone.  Iam new to this group and have only been a member of breast cancer care a few months.  I was initially diagnised in 2001 and had a mastectomy followed by five years on Tamoxifen.  I continued with routine mammograms and went to the breast clinic twice with concerns which were brushed aside by the consultant. In May last year I saw my GP regarding a deterioration in my breathing and folliwing a chest xray and CT scan was diagnosed with SBC.  I have recently completed 6 sessions of Docataxol and Herceptin. I am due to get the results of my CT scan next wednesday and find out out what further treatment will be.

I have me bone, lung and skin mets. Could they have been picked up earlier if my concerns had been properly investigated? Who knows but if they had I would not have had the life style I have enjoyed. 

I refuse to be negative about my situation and will remain positive whatever the future holds.  Family and friends think I am brave but in my opinion this is the hand I have been dealt and I will live my life to the full.

Hugs to all you ladies

Cress
Member

Re: Hello everyone!

Anybody heard from Mitch23 recently? I know that she was having a bad time with liver mets. Hope she is ok and sends some news soon.

 

Julia x 

pussy
Member

Re: Hello everyone!

Hi

i also can not take capecitabine they think i am allergic to the fluorouracil it contains i was taken off it with in 24 hours i was so bad 

i am now having the denosumab injections which are giving me terrible bone pain at present only had 2 so far i am hoping it will subside after a few more i am also on letrozole which i havw taken now for 2 months fingers crossed they are working 

kay

kittycat40
Member

Re: Hello everyone!

Hi I have triple negative sbc in bones, pleura (fluid around lung) and liver.  I am currently on Eribulin chemo and Denosumab injections. Primary dx 2007, mets from 2012 onwards.  If I can be of any support please send me a message.  Love & best wishes xx

Downbutnotout
Member

Re: Hello everyone!

Hello all from me too

Short version of my situation - My primary was diagnosed Sept 2011 and is triple negative. Despite two lots of surgery, chemo and radiotherapy I was told I was at high risk of a recurrence, which was diagnosed in April 2014 on my chest wall but surgeon couldn't get clear margins despite chest wall scraping twice. Then spread to skin and subpectoral region diagnosed Sept 2014. Very lucky to reach NED April 2015 after Gem-Carbo chemo but back in skin and further node spread in June 2015. My cancer isn't classed as secondaries, just called a loco-regional recurrence, but it's as incurable as secondaries. Disappointed to have an intolerance to Capecitabine but Eribulin is currently keeping my skin under control (quite good reduction in that recently) but I'm having a CT scan next week to find out how the rest is doing - have had my typical cancer growing pains recently so not sure if it's working as well on the inside as it is on the outside.

 

Here's hoping 2016 is a good year for us all.

X

 

 

Marirose
Member

Re: Hello everyone!

Hi everyone

I was dx 1996 then sbc dx 2013 I had ductal breast cancer grade 2 bordering on 3 in 96 then a secondary on the chest wall with a second tumour in the breast and on the sacrum (spine) and then after a bone scan in November I found out I had 5 more mets in ribs,left femur,left tibia left pelvis and right femur. Forgot to mention skin mets that appeared in 2014 on the chest wall tumour which spread 2015 to my clevage and other breast and abdomen although the latter seem to be calming a little. As some of you know I have been through a nasty time with 2 large ulcers on my skin mets which have now healed thankfully and now look much better since being on capecitabine. Well that's me still plodding on hopefully for a long time yet.

Love Rosemary xxx

Barton
Member

Re: Hello everyone!

Hello everyone,

Just introducing myself to the group. I was diagnosed with SBC in 2014, which had spread to my womb. Luckily it was at an early stage. I was put on Capecitabine initially for a few months, then a break, then a couple more months, since when I have been on Exemestane.

I have another CT scan on 30th Dec, and I have a feeling I will have to return to the Cap. Not looking forward to that because of the breathlessness and fatigue, but if needs must...

Anyway, just wanted to say hello to everyone and wish all the best to everyone. Happy Christmas to all, and none or few side effects over the Christmas season.

Hugs, Barton.

 

 

 

 

 

Lizzy_BCC
Member

Re: Hello everyone!

Hi all,

 

Thank you for your interest in the secondary private group.  It has been brought to our attention that there are some concerns over the safety and accessibility of the group.

 

All questions are listened to and it is understandable that the safety of the group is of such concern for everyone.  Please read all the information below, as we hope to alleviate all and any concerns, though please do continue to ask as the purpose of this space is for you all to feel safe and secure in order to provide a much needed space to be as honest and open with each other as you wish without the fear of others being able to intrude or read what you are all sharing.

 

Before accepting members to the secondary private group we read and check the content of their previous posts and see if they have previously posted on secondary boards.  If they talk about their diagnoses then we accept their request to join the group, If we are unsure about a user’s diagnosis we then email them asking if they can give us some more information about their diagnoses and explain that this is a closed and private group just for those who are living with secondary breast cancer.

 

We are very careful with whom we accept into the group and do perform checks but what we are unable to prevent is someone giving us or you false information. However, we feel confident that the group will provide a supportive, private community area for people with secondary breast cancer where they can feel safe and supported by others who have shared or similar experiences, which is in an area which cannot be viewed by anyone on the open forum. 

 

Also, we have happily now fixed the glitch which prevented users from viewing the members list of the group. You can now see the members of the group if you click the view all button at the bottom of the members bar on the right hand side.

 

Best wishes,

 

Lizzy & Anna

 

Community Moderators

 

Lizzy_BCC
Member

Re: Hello everyone!

Hello everyone,

 

It is great to see all the lovely support that is already happening on this group.

 

You can create a separate thread where you can share images and talk about your shared experiences of rashes, scars etc, on this private group.

 

The moderation team are looking into why you cannot see the rest of the members and it should be fixed soon.

 

Best wishes,

 

Lizzy

 

Digital Community Assistant

A1fie
Member

Re: Hello everyone!

Thanks Julie. Hope you get a good nights rest.
JulieD
Community Champion

Re: Hello everyone!

Waffles glad you've found some forums so you know you are not alone. Don't worry about making mistakes, we won't mind and we all do daft things sometimes. Just say what you want when you want.

 

Saralouisie, good to hear you are doing well.I had over 10 years between my primary and secondary dx, but like you I'm over 5 years with secondaries (bones) and hormonals and 'bone juice' keeping me stable.

 

Cress,I don't see why we shouldn't post pictures of rashes scars etc. I hope someone from BCC will confirm this but I reckon that If a new thread is started with a title like 'Graphic pictures - worried about scar/ rash/skin mets etc, then anyone who doesn't want to join in that can avoid the thread. It is indeed useful for visual comparisons.

 

A1fie, sorry to hear you've recently been dx. The initial period is horrid, so frightening and loneley but most of us find it a bit easier to cope when we have a treatment plan and active treatment has started. Things will get less scary and you are'nt alone. Please do use these forums we understand and want to help.

 

Don't forget there is also Live Chat on a Tuesday evening between 8.30 and 9.30 where we 'talk' in real time.

 

Must get to bed! xx

A1fie
Member

Re: Hello everyone!

Hi all. just wanted to say hi and introduce myself. Diagnosed a week ago with secondaries to liver and bones -complete shock  Dr's initially talking about weeks but now have started me on docataxel,herceptin and pumursab (sp) so feeling more hopefull.  I don't post much but take great comfort from reading your posts and listening to your stories of strength,hope and fears. It helps a great deal to not feel on my own.

 

Cress
Member

Re: Hello everyone!

Hello All,

 

Not sure if there's anything we can't discuss or the sort of photos we can post on here. I don't want to overstep the mark, but it would be useful to know if members can post snaps of rashes, ulcers, wounds etc. I know that it's not pleasant but it's sometimes useful to get a visual comparison. 

 

Any thoughts?

 

Thanks, 

 

Julia x

sarahlousie
Member

Re: Hello everyone!

Hi all, good to have somewhere to share our thoughts and lives. I'm 5 years down the road since bring dx with both primary and secondaries thriving and surviving on a combo of herceptin and hormonals. Xxxxxx
Waffles
Member

Re: Hello everyone!

Hi everyone, 

I'm very new to the BCC forum (or any forum really) so not entirely sure what all the buttons and options etc are for yet. Please excuse me if I do anything silly. Hope this part of the forum is a success. x

 

bazcas
Member

Re: Hello everyone!

Sorry LIST durr
bazcas
Member

Re: Hello everyone!

I can't see the kist either ??? x

JulieD
Community Champion

Re: Hello everyone!

Hi bazcas and Marie,

Marie, I can't see the whole list either.

Joining you in making lists!!

Marie123
Member

Re: Hello everyone!

Hello all, I'm not able to see the names of all members.
It's good to have a private place for posting. Busy trying to achieve all the things to do on my lists.
M xxx
bazcas
Member

Re: Hello everyone!

Hi JulieD yes lets hope this forum takes off for us SBC peops

Suze x
JulieD
Community Champion

Hello everyone!

Hi,

 

Thought I'd jump in and start the ball rolling!

 

Good to see some names I know here ( and from elsewhere). Smiley Wink

 

Nice to see BCC expanding their services for SBC. Having a private place has always been an important issue for us with SBC so hopefully this will prove to be a good support for those of us unfortunate enough to qualify for membership, specially those without FB who don't have access to other private support groups.

 

Anyway, enough of my garble - lets get talking! xx