Bone mets - please join in

[funnyface]

Good luck Jellytot! You have been through a lot and I'm hoping things calm down for you. Hopefully this drug works as well as pablociclib has  for others. I'm  not sure if I have ever had a panic attack or not, but I have been frazzled and completely twisted!! I'm betting your hormone level through you into it! I will be holding your hand! Hugs!! FF

[Carolyn52]

Hello jellytot
All the best for tomorrow and your new drug trial ..think you will be a first here on the threads with that treatment.
You must feel that your life is all about hospitals at the moment so hopefully once it all starts you will get a break from so much to and fro !
Hugs xxx

[jellytot83]

PMOL, good news! I had my ovaries and tubes removed on 17th July, so please ask if you need any information.

I'm a week into letrozole and so far, not too bad. Combined with the immediate menopause from my oophorectomy, I thought I was going to be a total wreck but I'm actually doing ok. I did have an awful panic attack on Sunday, I've never had one before, it was crushing and terrifying and lasted for about 2 hours. I'm not sure if it's a side effect from my meds or if it's just my body's way of going "holy hell you've dealt with a lot in 10 weeks", either way, it was not nice at all.

Tomorrow I'm off to see my oncologist about my trial drug Ribociclib and all being well with the scans I had last week (CT and bone), I'll be starting the treatment. When I had my bone scan, I could see the images of my skeleton. My ribs didn't look as lit up as before, so hopefully that means the radiotherapy did a good job. I could see my hips lit up though and they weren't like that before, but having not been on any systemic treatment (until last week) and knowing I've had a lot of pain there, I'm not surprised. What I saw could have been the new spread in the lumbar region my onc told me about. He said that treatment will remain the same and if the pain gets too bad, we can discuss rads there too. 

Anyway, please cross fingers for me for tomorrow, I'll let you know how it goes xx

[bonariensis]

Hi Wendy
We can't tell whether we should worry about pains or not but they are not always symptoms of progression. Didn't have much pain with tamoxifen but have more with exemestane, Earlier this year I developed new hip pain, shoulder pain and in my head (the fact that my routine appointment had been postponed didn't help) but a scan showed no progression and i started to feel better. It's hard not to but don't assume the worst..

Bon xx

[funnyface]

Wendy, Enjoy yourself! Then you can return relaxed and ready to get answers!

Mollymop and Carolyn, Thanks for the support. Today went well at the job. Went around and talked to a few residents and got them to engage in conversations, coloring, bingo marker painting, bean bag toss, kick ball, and a ball toss. I'm off tomorrow! I do think it is going to be a fun place to work. The more I'm there the more I realize how relaxed of a place it is! I'm ready for my results tomorrow! 

PMOL That's fantastic that the cancer isn't spreading quickly! Good luck with radiotherapy! We all have So much on our plates. 

FF

[Mollymop]

I have everything crossed for you FF, knowledge is power xxx

[PMOL]

Hello ladies! Some kind of good news!! Today I had a call from my onc who said that after speaking with other 3 MDT's they have decided that I am on the right path BUT the best news was that they reviewed the scans and the cancer hasnt progressed as fsast as they had originally thought 😁😁😁. So still on exemestane and zoladex, will have radiotherapy on spine and a chat with spine surgeon anyway...

also he mentioned about having the ovaries removed by surgery so will probably need more info abuot that too!!

anyway, good night 😴😴😴😴😴❤️❤️❤️❤️

[Hayeswen]

Thanks ladies. I am going to jet off and try to relax and then if still causing me to fret I will ring and try to get an appointment . Fingers crossed for you all whilst I'm away x

[Carolyn52]

Ff. ..best of luck for scan results tomorrow. .we are all holding your hand and hoping you have put on the big girl pants ready !!
Starting a new job is a bit stressful but hopefully you will take it all in your stride and settle in quickly too. Although it's only 3 hours a day , hoping the travelling time doesn't add to your day as I know in US ..it's all about distance between locations ..in the UK here where I live ..everything is all huddled together .
Hugs xxx

[Carolyn52]

Hello Wendy
I'm on letrozole for bone mets and have been getting more pain too in my hip etc. I'm seeing oncologist next week and am going to ask for scan etc ...it's always a worry what is happening inside the bones. I always try to think back and see if I have caused the pain myself with moving awkward or doing too much etc etc. My son's large dog jumped on my lap last week and so I'm blaming him for extra pain !!
Hugs xxx

[funnyface]

Wendy, Yes we all experience new pains. Sometimes it just goes away, sometimes it's something else and sometimes it is progression. No way of knowing until it's checked out. I would call and see if they want you to come before Sept. Good luck. 

Renee, That is a dreadfully long day for a two hour appointment. You are a saint being so patient!! How sweet of you to make lunch for your DIL. It's good for both of you. Wish I lived closer so I could take you for your appointments. 

Carolyn and Bon, Sounds like a great setting for lunch! That's great you can get together. 

I know I need answers, but not looking forward to results. I just don't 

 think I feel right. Feel that my breathing isn't as good. Unless my imagination is working in over drive. I will say though that my knees have calmed down a lot!

I finished two days of training! Ten hours of watching movies and signing papers. Today I actually start learning the job. I'm sure I will be fine. It is only 3 hours a day, 4 days a week. I figure I can get through 3 hours. My old job was 4 hours a day, 3 days a week. I'm going to miss my Tuesdays off! Thinking positive! I got this!!! FF

[Hayeswen]

Hi all

Just looking for some advice . I have been on tamoxifen and denusomab for 6 months now and apart from hot flushes have been managing well. However in the last week I have had hip pain in a new area of my right hip and mentioned yesterday at my appt and was told to see how it goes. Due to go on hols so trying to put out of my head but worried tamoxifen has stopped working and next appointment is beginning of sept. Anyone else ever experience new pain and turns out to be nothing?

By the way tipping it down here n London

Wendy

[jazmia]

hi carolyn ,

pleased you enjoyed yesterday,and yes the weather is dreadful here as well ,terrific rain showers then hot sunshine ,very strange to say the least.

went for my treatment monday ,best said soonest mended ,i went from the house at 11am and my son brought me back at 8 30 ,this was for a two hour treatment ,just waiting around the rest of time,so i was not amused at all,as you can imagine,apparently they have amalgamated two clinics into one.?.

go to onco on friday so will mention my knee and see what he thinks and will let you know .

will depart now as have daughter in law coming here on her lunch break ,i just do her some soup and a sandwich,plus a yoghurt so she is easily pleased 

take good care 

renee x

[Carolyn52]

Good morning ladies from sunny Devon. ..NOT ..it's wet and horrid here today ..road works everywhere too.
Thank you for the cream tea and catch up yesterday Barton and Bonariensis ..it was really nice especially in the castle surroundings.
Feel so sorry for holidaymakers and school kids with weather like this ...
Hugs everyone xxxx

[jazmia]

hi bon

thanks forr your comment ,i do try to keep cheerful ,but hard sometimes ,just waiting for the ambulance to arrive and take me for treatment .

your wedding sounds wonderful.

take care .

Renee

[Carolyn52]

Bon ....nice to hear from you and I hear we are trying to get together with barton soon for a lunch. Maybe you need to stop walking around in 4 inch heels if your feet hurt !! Ha ha ..sorry about your feet. .
Ff.
All the very best for your new job ..I'm sure you will settle in very quickly but you have twice the stress this week with scan and results too happening but we are holding your hand across the pond for you and hope e and e is doing its magic.
Hugs xxx

[bonariensis]

Ff, good luck with your new job. You'll be great, lucky clients! Hope you get good news from your scan and your dobts about e&e are unfounded. Will be thinking about you   Bon x

[funnyface]

Hi girls! Excited and nervous! I start with orientation for my new job tomorrow and Tues. I start work Wed . I will planning programs for dementia clients. I was hoping to get away from "dementia" but the hours are perfect and weekends. I figure I will see what happens. At least I got my foot in the door. 

Tues morn I have my scan. Thursday results. I really don't think this treatment is working. God news is the rash and itching is calming down.

Had a great weekend on the bay. Twelve of us got together for a party day and 6 of us stayed. Blew up air mattresses and slept in the living room. Felt like a bunch of giddy teenagers. Was good for the soul.

FF

[bonariensis]

Hi All

Kirky, I have a lot of foot pain from exemestane, have been walking round London, ouch, but went to a fabulous wedding, my nephew's at the House of Commons, reception on the terrace (has a marquee roof). Another side effect for me is chronic insomnia. The hotel where we were staying promised a good night's sleep or your money back. I didn't think it was fair to penalise them for my sleep problems but at 2.30 this morning i heard what sounded like very heavy rain. It wasn't, there was water pouring through the ceiling. Perhaps I'll get a refund.

I only found out about my bone mets because I had a CT scan for a gut problem which turned out not to be a problem. Goodness knows how long they had been there or how long it would have been before I noticed something and then whether any doc would have taken it seriously.

Suze, a slipped disc is no joke, Iv'e had one and ended up having an operation. Hope you get the treatment you need soon.

Renee, hope you get some reassurance at you appointment, you are truly inspiring and lovely to know

Hugs to all Bon xx

[Carolyn52]

Hi Moijan
I've just replied to your text ..I honestly don't know really ...I get pins and needles in my hip and femur but I think everyone is different ..rads do help with pain levels.
Before I was dx with mets ..I had a large bruise on my femur which itched a lot ..after scan it was found to be a hole in the femur through mets ..it was never painful though.
Only a scan will define what's going on and put your mind at rest .

[Moijan]

This damn phone not Amer pain. .. a met pain x

[Moijan]

YES! Carolyn-I think they are used for that too- maybe yours is less likely to melt tho - but one things sure-the machine will sound a bit 'bonky' anyway sorry for not saying- it's the Royal Academy Summer Exhibition, (which turned into Moijan and her cheek exhibition) of artwork- I am an artist -tho on sabbatical. But not of that ilk!

So- if my pain turned out to be Amer pain- would they give me rads? And would that help? I know I'm an old hand at bone mets but up till now no symptoms in the btm
Moijanxx

[Carolyn52]

Hello Renee again
Back some time ago we started a thread about wheelchair users etc ..it's called femur pinning and I've just brought it back up for you to read ..you will see it in the list now ...enjoy
Hugs xxx

[jazmia]

hi again carolyn,

i have just read your last post and how right you are about people being in a chair and others thinking you are deaf ,some even think i have dementia as some nurse was explaining something to me ,she was on her knees ,talking so slowly as if i was a child ,then said ,would it be better if i wrote it down for you,arghhhhhhhh how i didn't hit her i dont know,but now if anyone attempts in the slightest i just say,hey i have lost my leg plus have cancer ,but not lost my mind ,it does so annoy me .

Renee

[Carolyn52]

Hiya sue
It's nice for you to pop your head over the fence and say hello ..we love to hear from you.
Aagh ..mobility scooters ..never tried one but went out twice in wheelchair after my hip op ....hated it and manage now with just a stick ...worst thing people think that because you are in a chair you are deaf too and shout and talk slowly .....
Hugs xx

[Carolyn52]

Hello Renee
Wish I could find a decorator for that price ..bargain and worth it ..my son's are so busy I don't mention it either. ..
I'm sure the herceptin is doing a good job ..it's a very good treatment ..unfortunately not for my cancer status ....your oncologist will be able to check things out to put your mind at rest.
Enjoy your day and big cuddles to your lovely dog ..we have had three alsations in years gone by and they were all lovely .
Hugs xxxx

[Suze57]

Hello ladies. Thank you for all your lovely comments about my good news. Pippin, I did leave like a bat out of hell but my heart is still on this site. I keep up to date every few days because in such a short time I got to know you all so well. 

It has been an experience joining this site and tbh I still wonder whether the doctors are right. 

I'm no longer on Letrozole and can tell you that my aches and pains have reduced considerably so Carolyn was right about that causing the most pain. 

Still waiting patiently for them to deal with my slipped disc and yesterday attended my first music festival using a mobility scooter for the first (and hopefully last) time. That was an eyeopener as well. Spent quite a bit of time being ignored and feeling lonely because couldn't get in with the crowd. But I blinged up the cart, covered my head in flowers and once I'd mastered the controls, shot through the crowds with a huge smile. 

I know I'm lucky and I've had an insight into how secondary breast cancer feels but I still belong here albeit as an outsider looking in. I still feel your triumph, scanxiety and pains. And I will be watching, laughing with you and crying from frustration that I can't help.

Much love and cyber hugs to you all. Sue xx

[jazmia]

hi carolyn

i had to have someone in to decorate for me as could not manage from wheelchair,and didn't tell family until had arranged a decorator ,or they would have said they would do it ,but i get my disability benefit so pay from that ,i had my staircase done and wet room ,ceilings ,walls and 8 doors ,he charged me £ 200 which i was amazed at so having him later in year for kitchen and lounge ,but as you say it's the upheaval for these rooms.

dont know what to think about my treatment carolyn ,have had 8 out of 18 sessions but breast gives me pain now ,not a lot but there and dont know if normal or trearment not working,but see onc on friday so shall ask him and also mention my stomach and back which my doc said was the cancer spreading in his opinion,so shall be pleased when this week is over .

take care and thanks for your on line company.

reneexxxxx

[Carolyn52]

Hello Renee
We also got loads of rain last night but it's fine today.
Long day tomorrow for you but hopefully the treatment is blasting the little invaders !! No haven't chosen carpets yet ..got to get decorated first but somehow not looking forward to upheaval. .maybe later in year!!

[jazmia]

hi carolyn

a happy sunday to you too,we had rain all night long so everywhere soaking ,hoping it stays away now as have my treatment tomorrow then oncologist on friday ,not looking forward to tomorrow as an hours drive each way ,but hey no other choice ,my appointment is 1pm but have to be ready for ambulance by 11 am and usually quite a wait before the actual treatment comes to the ward,

hope you are well and feeling ok ,have you chosen your new carpets yet ??or did you say in the future ,my memory is like a seive at the minute down to old age i suspect haha.

take care of yourself .

Renee

[Carolyn52]

Hello Moijan ( the Queen of spikey balls now)

Well what is a RA exhibition? Thinking about the spikey balls ..I have 2 like that I use in my tumble drier to stop the washing tangling up. Maybe I will join your spikey ball club now !! Ha ha ...not.

Pmol ..hope u get on the trial as it's the last step before chemo really isn't it?

Hello babsy
I think a lot of us got missed with our bone mets and it was put down to old age before we got scanned. .I was told mine had been there years too so the little blighters were well settled before I got treatment ..
Hello everyone ..happy Sunday and hope u r all enjoying your coffee and croissants this morning.
Hugs xxxx

[PMOL]

Thanks Carolyn! Now on exemastane.  Had an emergency mri as question on stability on my spine; going to speak with spine surgeon as they decided it was not urgent, having radiotherapy and trying to get into palbociclib trial... and been signed off from work for 4 weeks so 'enjoying' the summer holidays 😅🌧🌧 xxxx

[Babsy]

Hi everyone, haven't posted on this forum for a week or so, as I mainly use another forum now. However, I missed all of you lovely ladies so have caught up with the last few pages. Has anyone been to a breast cancer  meeting ? They're having one in Maidstone on Monday, came across it by chance ( pressing wrong button on IPad). 

Ive got extensive mets in my skeleton including my entire spine. I'm fortunate in that I have no problems in my spine. The reason my spread was found is that my GP thought I had Piriformus syndrome. Eighteen months later it was found that I have extensive bone mets. Apparently, the original treatments hadn't worked so I'd been walking round about 8 years, without any real symptoms. 

Funnyface, congratulations to you. I told you there would be a new pathway for you. You will be sorely missed I'm sure. 

Welcome to newbies, you'll find loads of support on here with these gorgeous funny ladies. 

[Snuzd]

Thank you.... 

[Moijan]

Now then.....yesterday, after I struggled home(well, hobbled actually)

I Sent an update on my trek to the RA Summer Exhibition....and lost the lot!

anyway.....sadly Ramade stood me up!  hadnt got my spiky ball with me, I had to keep 

prodding and kneading My left cheek in order to be able to keep going......goodness knows what the hordes of other people thought!   Anyway, I just knew Carolyn would like some pictures, as it was an exhibition....so here below, we see in first place.....the spiky ball, next ..the RA, and lastly,...the welcome  very very welcome, sight of my bus appearing,  to take me back to Victoria station! Boy Was I grateful to see    

That.

[Carolyn52]

Hello ladies
Pmol and Snuzd
Sorry to hear that the hormones have stopped working so well ...we all get in a sort of comfort zone popping these little pills every day but they do have a shelf life for controlling the little blighters ...hopefully the oncologist will have something else in the magic bag to kick in.
Some ladies here have years on them ..some don't so it shows how individual we all are ...
Sending hugs xx

[kirky_68]

Hi Snuzd. After letrozole failed I went on to Exemastane. Didn't stay on for long (my choice I switched to oral chemo as was fed up of the flushes and joint pain I had with all the hormone therapies). I have been stable with organ and bone mets for amlost 18 months now.

Good luck and hugs

Paula

[Snuzd]

Hello

New to the forum. I have bone mets. Been on faslodex for a year. Was told yesterday that it looks like its not working. Another bone ans ctr scan in 3 months. I had primary 6 years ago had FEC chemo. Leterazole 2 years. Tamoxifen 3 years. Had radiotherapy on bone met in hip. Onc said one more hormone treatment left. Did not ask what it was any ideas. I'm usually so positive but feeling a little anxious this evening.

[PMOL]

Oh Jellytot! Don't know how much I understand... I got told last week that my treatment hand't worked and tumors are bigger and spread more... big hugs xxxxxx

[jellytot83]

Thank you Nicky, I've posted in the hormone therapy thread xx

[nicky08]

FF - enjoy the weekend, sounds like you will have some fun and you deserve it after all the stress you've been under. That silly lady (director) doesn't know what she's missing and it's such a shame that staff and patients are unhappy enough to leave. Hope the new job started well and continues to get better. Maybe you could get hubby to do a few of out of hours pranks to get the new director worried he he!

Jellytot - obviously being told you have bone mets as well is a bit of a blow but as you've said it probably was there anyway but not noticed, often bone mets appear in more than one place so a solitary one could have been missed first time around. To be honest I have no idea if my bone mets were present when I had my primary as I didn't have any form of scan to check anything so they could have been there longer than I think. Anyway the good thing is you have started treatment and this will hit all mets so everything will get treated. Just be aware you may suffer with menopausal symptoms quite badly being younger than most of us who have been on, or are on, hormonals. When I had tamoxifen and zoladex after my primary I had awful menopausal symptoms as I was quite a way off from my natural menopause. I don't need to alarm you but you may need time to adjust as you're so young and they could be worse than some of us older ladies get/have had. It's worth reading the hormonal treatment thread in the main forum as there's more ladies taking them with primaries at a younger age. Also do keep a nite of which brand you get - some can give more side effects than you expect. I have had arimidex when it was still branded then changed to the generic version (due to NHS costs and it coming out of licence) and boy did some brands make me feel extra rough! Same with letrozole a few years ago. If you think one brand is better, or worse, than the others you will get make sure your pharmacist makes a note, they can try to get your preferred brand although it's not always possible.

Wendy, nice to have a bit of down time when the company PCs go down! Hope you don't have to make up the time though. Good luck for next week so treatment and it's not surprising you can get an inconclusive smear test result, I'm sure the various treatments we are all on affect the rest of our body in one way or another.

Hi to all other met some ladiies, especially the ones wearing their big knickers 😉 have a good weekend whatever you are up to - even though the sun has definitely taken his hat off for a while - must be the school holidays! 🌦

Nicky x

[Hayeswen]

Hi All

Well I am in work and having computer problems hence I decided to check in with yourselves.

Funnyface congratulations on your new job. Dreading going to work each day because of a boss is stressful I have been there but always managed to come out The other side.

Jellytot don't despair your Onc will do whatever they can. That is what I keep telling myself and as I am a glass half empty person it is hard to see the positive but 6 months on from my diagnosis I am coping better.

Went for a smear test this week and was told it may be inconclusive due to my condition. So that upset me and I have a sore throat that won't budge so have been told to see the dr. I am trying to forget I have this but every week seem to be at the drs or hospital. Next week is injection day but after that am off on hols. Cant wait.

Have a great weekend all.

Very dull here in London and looks like it will rain again but being positive I have a brolly😄

Wendy

[Carolyn52]

Ff
That is the way to interview for a new job ..hands on and not answering silly questions on a form !!
So go for it and enjoy ....
Moijan and remade
Pity u don't live near to each other as u could start off a "spikey ball club" ..wish I was a fly on the wall in your houses though !! Ha ha ..
I'm trying to do a lititle medication to help me sleep but not very good yet ..all that deep breathing just makes me cough but I do a few omms and aaghs and have bought some Buddha's too ...but I prefer to rub their bellies for good luck for my lottery ticket at the moment !!
But little steps xxxxx☺☺

[Carolyn52]

Jellytot ..
Welcome to the letrozole club ..Jeanette and myself are very much on the same page with our mets ..although my oncologist doesn't do tumour markers like many others ... it's a easy little pill to tolerate ..but if u do need support from us ...just shout out !! Jeanette and I both have itchy scalps ..I think people watching me must think I have nits !
Hugs xxx

[jazmia]

Hi funnyface.

congratulations and it just goes to show what a nice person you really are when given a job just by meeting you and enjoying the short time with you.

i wish you all the very best

Renee

[funnyface]

Thanks ladies for your votes of confidence! I had another good boost, too.My new employer never really gave me a formal interview! She had me come in fill out an application and meet her and the lady I would be working with the most. The lady I met with plans the activities and I will be helping her with that and implementing them. When I arrived she was cutting up cake for the residents. I grabbed a pair of gloves and pitched in and said we will talk while we work. We only talked maybe 15 minutes and I showed her a couple pictures off my cell phone of my creativity. When they  let me know I had the job, they Saud they loved me instantly and didn't need a formal interview! They didn't even interview anyone else. I will let you know later how today goes. It's another 3 hours away! Then we are leaving from there for the shore! I'm taking my kindle with me, so I can let you  ladies know.

Carolyn, the lace looks quite fancy sticking out of the Cake is! Wow, what a new trend I could create. It sure would be more comfy than thongs! 

Renee, Thanks for the giggle! Lol you would get arrested here if you did that! 

FF

[funnyface]

Jellytot, I'm sorry you got some bad news. Mine is in my spine too, but only one spot. So far, I wouldn't have known it was there. No pain. We all understand how you feel. I was dealing fine with it being in my lungs and lymph nodes in the chest. Even when my lungs got more tumors and then collapsed. I still felt we were containing it at least. Then when I found out it moved somewhere else I was bummed. You have already been through a lot! I hope letrozole kicks it to the moon!! FF

[rosie53]

Hi Jellytot, sorry to hear you have had some bad news but please don't be too down about it.
I like Carolyn am in the "letrozole gang" and it had been amazing for me, actually I have just spoken to my bcn and got the latest results for my tumour markers and they are now comfortably sat at 17!! I have been on it now for just over 18 months and at start my TMs were creeping up to 176!
My mets are in my spine as well as my hips, ribs and femur.
Take care hugs Janette xxx

[jellytot83]

Some bad news from me, the cancer is also in my spine 😪 It may have been there all along and was just too small to spot before but they've reviewed my PET scan and can see it there. Apparently my plan doesn't change in any way and my onc is still confident we can kick it into touch, am just devastated as every appointment feels like another punch in the face. In other news, started my first letrozole yesterday so at least the systemic fight has begun xx

[rosie53]

F/F good for you girl!!!!
Wishing the best of luck in your new job!
Hugs Janette