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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Hello truffle shuffle
Great reading your posting and you are so right ...I'm not a moody person at all but yesterday I really had the grumps...nothing pleased me, even chocolate didn't help .
Back in my old life ..we always went away to the Sun in September and I think that helped the season changeover.
Carolyn xxx
Carolyn52
Member

Re: Bone mets - please join in

Phew Lynn
Good that you have given them some welly about these brands ...I am the same ..different side effects completely ...the ones I have this month make my eyes itch and cause more hair thinning ..even after four days ..if I go back next month and don't get my regular brand ....I'm going to throw all my toys out the pram until they sort it !!
Carolyn xx
Lynnq
Member

Re: Bone mets - please join in

Hello everyone, it is ages since I contributed but I do read all of your posts every couple of days.  

 

Carolyn I find that the Novartis brand is best for me and I have been on Letrizole for almost four years.  After a year or so of taking whatever the pharmacist gave me I decided to keep notes because I had read that differing brands can cause problems, and I sometimes had bad joint pains, tiredness and upset stomachs.

 

anyway after about six months I discussed this with Onc - Showing him my notes-he suggested I speak to GP and he put a note in the routine letter he sends to GP about it.

 

saw GP who was brilliant and put a note on my records which shows which brand I should have.

 

after a couple of months I was given different brand so I took them back.  Receptionist spoke to Practice Manager who told her to tell me that it made no difference.  I then asked the receptionist to ask the PManager if I could speak to HER ( with apologise to receptionist). P Man very reluctantly came out to speak to me, she said that it didn't make any difference, it was the 'trade mark' that counted.   I explained that different companies used different  substances in their pills etc and that both GP and  Onc agreed I should have the brand shown. She then told me that they were expensive and some times difficult to get hold of.

 

okay I said I will order them earlier each month so they have plenty of time to get them.

 

same thing happened a couple of months later so I wrote to PMan (copied the letter to my GP) and asked if I could make an appointment to see her and the GP together so HE could explain to her.

 

My GP actually rang me to apologise!!!!!    He said he'd explained to her and it wouldn't happen again....and it hasn't.

 

i know that not all of us have such good GPs, but everyone - doctors, nurses, receptionists are really nice.  Just the practice manager, and I suppose that she was just being a bit over-zealous.

 

hope everyone is as well as they can be.

 

 

Barton
Member

Re: Bone mets - please join in

Sharon - so glad you are home! And relatively ok. Hope you continue to improve.

 

Hugs. Barton.x

truffle_shuff
Member

Re: Bone mets - please join in

  Morning  ladies,

 

 just wanted to jump in on this thread, I have just spent a few minutes having a bit of a cry whilst in the shower, I allow this space  to contain" tears for fears". I always go on a downer at the end of every season, its a bit scary isnt it jumping off into the unknown , when we have managed to get through the last season.

 

 I work in an  oncology hospital and talk to the  junior Docs informing them ,how it feels to be on the patient side of this disease and how to communicate , anyway,  at the end of one of these little sessions, a senior clinitian told me , it had never ever entered his head that change of season might effect our moods, depression status and ultimatley treatments ? and he  now bears it in mind in clinics every season change.

 

 The march of Time is very strong,  but two weeks in and  I am alll settled again,  hope you all cope with the change,  sending you all hugs, and a bit more sunshine xxx 

 

 

Carolyn52
Member

Re: Bone mets - please join in

Hiya ladies.
Same old chestnut .letrozole ladies.

After nearly a year I find "accord " brand the best of the bunch and the doc has marked my prescription . When I collected the pills this week was told this brand is not available and was palmed off with another.
Does anyone else get this prob?
Hugs xxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Sharon, hooray you have escaped! So sorry you have had to spend time in hospital but the only consolation would be that you have started your new treatment and you would have been under the watchful eyes of the doctors and nurses. Breathe, take in the fresh air (I do that even when I've been for my 3 weekly treatment, I hate being on the ward!) and recover some strength - and eat something not from the hospital kitchen!

Hi Debbie - it's a good idea to keep away from SBC reminders, when you don't want them! My previous oncologist used to ask me 'do you think about your condition' and I felt like saying - yes, because I'm on a secondaries BC forum every day! This was when my bone mets were stable and no symptoms so there was no other reason to change what I did! Anyway I wanted to say, at this time of the year lots of us can feel low, as you have said, the summer is over etc, however that is also how lots of people without cancer feel so it's not to be unexpected. But you now know where you can share your downs as well as your ups! Also, over the years I have learnt that bone mets will always show as stable, never NED or 'gone', as the scarring is always visible, they just sclerose (harden) so stable is a great result 😊

Hi to all other SBC ladies, I have been away for a few days with my youngest daughter, having a mini break before she starts her intensive cooking course 😋, so I'm trying to catch up on posts.

Take care

Nicky x

Carolyn52
Member

Re: Bone mets - please join in

Jeanette
Hope u had a good holiday ....bet the washing machine is in overdrive and all the Windows are wide open to let the house breath again !!
Xx
Carolyn52
Member

Re: Bone mets - please join in

Good morning everyone
Sharon ..so glad u r home and now you have to get your strength back ..let everyone spoil you and enjoy this gorgeous Sun ..it will b in short supply now Autumn is here.
Hugs Carolyn xxx
HelenAquarius
Member

Re: Bone mets - please join in

Hi Debbie... Good to hear from you. Yes the disappearing sun can bring a low. 

Stable is very good indeed - it's a reason for cheer as it means what you are taking is working and stopping things from spreading. 

 

I went to to the garden centre and decided I wanted winter flowers so I can sit and look at them throug the window. I got loads of violas which are like small pansies... So many lovely colours! Gonna try and have the most colourful winter garden I can.  There's a gardening club thread on the private group - post us your pics!

 

helen xx

daisyjane181
Member

Re: Bone mets - please join in

Good Morning Ladies.

I haven't been on the forum for a little while as actually wanted to try and put this 'condition' out of my head as much as possible.  Guess most people could call it denial but as its been summer holiday time I really didn't want it taking up precious time.  I think when the sun is shining all seems so much better but now the sunshine seems to have disappeared I can feel my mood slipping somewhat.  I have been on my hormone treatment now for nearly four months - Tamoxifen, Zoladex and Ibandronic Acid (for bone secondaries).  Hoping that they are doing the job.  At first review in August got told all was stable.  Was secretly hoping that I might get told that it might be regressing but stable is good isn't it?  Back in November for another scan and review.  Anyway I think I just felt like I needed a little ramble this morning.  Hoping everyone is doing OK and sending positive vibes out to all.  I think I may go off to garden centre this morning to get a few bits.  Debbie xx

HelenAquarius
Member

Re: Bone mets - please join in

Crikey Sharon, here's to a restful week after all you've been through. So glad you have escaped the 'hotel'

 

sending cyber huggles your way

Helen xx

funnyface
Member

Re: Bone mets - please join in

Sharon, Home sweet home! That's wonderful! You have been having a rough time. Hoping for some easy times for you! FF

Marirose
Member

Re: Bone mets - please join in

Dear Sharon 

so pleased you have been able to get home now you can relax with the comforts of home. You really have had a lot to put up with and I wish you a speedy recovery

Much love and (((hugs)))  xxx

JulieD
Community Champion

Re: Bone mets - please join in

Glad you are home, rest and take things easy, listen to your body and sleep when you need. xx

 

scratch
Member

Re: Bone mets - please join in

Got home at eight tonite .still feel ropey but not surprising after all that.still can't eat much but would rather be home .take care all Sharon.😻
funnyface
Member

Re: Bone mets - please join in

Sharon, Glad you were able to proceed with your treatment! As bad as we all would like to have a break from all this, we know we don't want to miss many treatments. You did good getting through it! Now, to get yi h an escape plan! FF

Moijan
Member

Re: Bone mets - please join in

So pleased to hearthe bloods are ok Sharon and that you had the Eribuln...well. Done! Hopefully you can. Get home to orrow.

 

everything is crossedxxx

Moijanxx

LYNDYLOO
Member

Re: Bone mets - please join in

Hi Sharon so sorry to hear you are in hospital at the moment. Hopefully they will get the sickness sorted. Sending huge hugs. Linda

stresshead
Member

Re: Bone mets - please join in

Hi sharon, glad to see you are still 'upbeat' despite all you are having to endure at the moment. Lets hope you get the sickness nder control and get home fast. Lots of love.xxx

Carolyn52
Member

Re: Bone mets - please join in

Sharon
Good to hear from you ..phew I'm feeling guilty moaning about a few aches from the bone juice this week when you have had the full works !! I salute your strength of coping with it all ( not patronizing you though) but hopefully you will b able to go home later to your own comfy bed and family.
Sending you every hug possible xxxxx❤❤❤
scratch
Member

Re: Bone mets - please join in

For good. Measure..ibhad the coldcap on the drain still in.the chemo ..then the demusamab..then that tummy jab you have in hosp for blood clotting...i felt like pin cushion...,but if I can sort out this sick thing.hopefully home tomorrow.xxsharonx
scratch
Member

Re: Bone mets - please join in

Hi everyone.bloods were fine.so
the chemo went ahead but not till about half five do I'm now wide awake on steroids...and had sickness today...not the chemo fault as it happened before....they gave me a sickness injection seems to have helped...update later.xthanks for all your support ladies.❤😻 xsharon
Moijan
Member

Re: Bone mets - please join in

Hi Sharon

 

hope your chemo went well. Love and hugs to you

 

Moijan😎❤️🎼🎹🛁

funnyface
Member

Re: Bone mets - please join in

Sharon, I was away for 2 days, just saw you booked one of those vacations nobody wants!! Hope you feel better now that your drained. I haven't  had to do any drainage, but it doesn't sound fun! Hoping this chemo kicks in and gets ridof the problem.FF

Carolyn52
Member

Re: Bone mets - please join in

Hello Sharon ..
How are u feeling today ? Hopefully home from hospital with a nice flat tummy too !
Hope chemo went ok too.
Hugs xxx☺☺☺
Moijan
Member

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Yes Helen, hope yours went ok...how are you ferling?

 

Moijanxx

Moijan
Member

Re: Bone mets - please join in

Hi Sharon, 

 

tough day then ....so sorry. Hopefully tomorrow will be better. Good you are having the Erib. 

 

 

I was feeling fine today and this evening..I think it might be partly because ive been pushing the fluids even more than usual.  I know it flushes stuff out quicker but the effects stay around.

 

have a good nights sleep tonight Sharon if poss and let us know how the infusion goesxxx

love, Moijanxx

scratch
Member

Re: Bone mets - please join in

Hope yours went well today.xsharon
scratch
Member

Re: Bone mets - please join in

Hi moijan had drain today so bit
Rough.chemo will be given to me on the ward tomorrow.xsharon
Moijan
Member

Re: Bone mets - please join in

Hi Sharon, sorry, my ipad is playing up and kept throwing me out!

 

nice to hear they are looking after you..yes, they may well. Be worried about having given you inaccurate info. Am sure they are sorry. However, what a shock for you...and its amazing they did give you that stuff...was it someone elses stuff..by mistake? Or had they mis read the report? Goodness...we all make mistakes, but that one you didnt needxx

 

The rescus thingy that spooked you...it could be hospital policy I guess, but you could feed back how it made you feel( but prob not worth doing)

 

you are doing really well Sharon and one brave lady. As I said, you have bern there before( being drained) and so you know what to expect.

 

re tumour markers, yes I know they go up and down, im currently happy, but we all know these things can change...

 

hope you get the Eribulin tomorrow as planned, maybe you will feel a bit better soon...hopefullyxx

i have a good feeling about this drug...its not a cure, but it has given people a lot of. Mileage.

 

am off for my dose today, please keep your fingers, toes, legs and eyes crossed for me and. My veins!

 

when you feel heaps better, may travel to Southend to build a sandcastle and hope you are about, And feel up to giving me a hand

 

love, Moijanxx💜💙💚💗💛❤️💖😎

scratch
Member

Re: Bone mets - please join in

Moijan enjoy your good time
Xx
scratch
Member

Re: Bone mets - please join in

Also when I had capecitabine my markers went right down and I was ned with sclerotic scars..and I felt great...unfortunately it came back hopefully this erubulin will help.xxsharon.xx
scratch
Member

Re: Bone mets - please join in

Moijan your doing really well.im just sitting around in my room.i wonder if I got my own room coz they sent me report saying I had lung Mets when I havnt its quite a big mistake it stressed me all last weekend...yes we have two specialised oncology wards at this hospital...so its good care usually.x.and the chemo unit is quite new very modern bright with own garden
.etc...still rather not be here
.❤ ..havnt heard anymore from Drs yet will update later .x😻 x
Moijan
Member

Re: Bone mets - please join in

Thank you Stresshead, im under no illusions, we are all going on the same train! However, mine have come down drastically in two months.....which feels pretty amazing. When i looked back they are better thn they been  for 16 months. So im quite pleased. I guess the next mri will be the telling!

 

i am glad you are doing well too, take some joy in the results! It isnt always like this.

 

love Moijanxx

stresshead
Member

Re: Bone mets - please join in

Janette, a little late but was so pleased to hear your fantastic news. Enjoy your holiday!! xx

Sharon, sorry to hear you are back in hospital, its horrible isnt it. Still at leasts it sounds like it will be a quicker visit this time. Hope you are soon sorted and home again.

Moijan..glad to hear your markers are still going down. I now always ask my onc and like you, for the last 4 or 5 times they have been decreasing. However, he did say to me today not to read too much into them. He has told me that over the course of the disease they can go up and down for loads of reasons. Just i thought i was getting some good vibes, i have them dashed again. I know they are not definitive and sound indicators but  it was nice to think that something good was happening when they dropped...i think he was just trying to say dont get disheartened or anxious when they go up but i still felt like he'd rained on my parade.I dont mean to do the same to you but wouldnt want you to get despondent if they do start to go up, although i know if you are anything like me, i will anyway!! xx

On the denosumab front..i think i heard , read or was told that it is newer than zometa but more expensive so may explain why not everyone has it. I had mine six weekly from the start to fit in with my chemo cycle and until its found that my bones are worse i dont suppose they'll cahnge it. As a few of you have said, you seem to be getting side efects with a four wekly regime so perhaps six is the optimum. Will be interesting to see if the side effects reduce.

Best wishes to all. xx

Carolyn52
Member

Re: Bone mets - please join in

Hiya Helen
Yes meet ups will b nice but it's going to be quite a job as we all live all over the place !!
We have bought cyclamens at the gardening centre and they look lovely and hopefully will stay colourful all winter.
Carolyn xc
Carolyn52
Member

Re: Bone mets - please join in

Hello Sharon.
So sorry that u r back in prison ! But u will feel better once you have been drained again.
Keep posting and let us know how you are.
Hugs xxxxc
scratch
Member

Re: Bone mets - please join in

Hi everyone in back in hospital again.stomach swelled up..actually came to see oncologist specialist who was lovely about the scan reports that I have lung Mets....but stomach over last few days swelled up so she's kept me in for a drain probably tomorrow...the lung Mets turned out to be a typing error😈....not the sort of thing I need to be having at moment
.anyway I was straight on ward didn't have to mess with a&e...l
Update you all tomorrow.xx😻
HelenAquarius
Member

Re: Bone mets - please join in

MEET UP??

 

Some of us have been mentioning meeting up on another thread and we seem to (sadly) be a big community on here at the moment. 

 

I'm going to post on the meet ups thread - under living with secondary breast cancer - and see if we can get something/ things organised for anyone who wants to join... Hoping I won't be billy-no-mates sitting in a cafe on my own somewhere 😂 So please check it out if interested!

Helen xxx

HelenAquarius
Member

Re: Bone mets - please join in

That sounds nice Carolyn.. Both Bude and the shopping! 

My hubby's been away working for 14 days (Poland) and is back at last tonight...hoorah! 

Maybe that's why I've been down as he's a funny lovely man and keeps me and the kids highly entertained 🙂

 

Went to garden centre today and bought some lovely winter flowers..violas.. Gonna pot them up tomorow and try and post on the gardening thread :-))))))))

 

helen - hugs to all xxxx

Carolyn52
Member

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Your very welcome although I live in the heart of Exeter so no geese but I'm staying in bude at my sister's . She lives virtually on the beach ..Sat on the balcony now ..cuppa tea and watching the geese ..just been to Atlantic village and exercised the credit card and had a McDonalds so all very nice.
Carolyn xxx
Moijan
Member

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Oh and Carolyn, if i come down to Devon can I bring my washing?

Moijan
Member

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Yes Carolyn, chocolate rattles!

 

did post this on the erib board, but my tumour markers just keeeeep on going doooown!

and im feel much happier, said to my lovely, really nice, patient and kind onc, that id been depressed and he said, well theres so much going on anyway for you. You cant be certain its the drug..guess hes right.

 

Carolyn, how can I get my partner to bring me down to Cornwall...id love to go down there,he doesnt lkie holidays and its such a long drive.

 

Moijanx

Carolyn52
Member

Re: Bone mets - please join in

I have been reading yr eribulin journey and its nice you all can touch base on the side effects between yourselves.
It certainly good support and sorry that you have all got the downer of bad moods though ..obviously a common se.
So helen, Sharon and Moijan throw a few rattles out your prams ..it's allowed.ha ha
Carolyn xxx
Carolyn52
Member

Re: Bone mets - please join in

Hello moijan.
We are in bude Cornwall for a few days and managed to avoid the floods but it was hot at night.
Sat on balcony overlooking coast and loads of geese flying around as there is a nature reserve nearby ..bit different for us as we are townies !!
No choc yet but it will b involved later.
Carolyn xxx
Carolyn52
Member

Re: Bone mets - please join in

Hello shanwoild
I'm the biggest moaner of denosumab ! I was ok for the first six and then I got bone pain ..it was lasting two weeks out of four and i put it down to that. Im spreading them six weekly now so will see if its better. The jury seems to b out on some US websites whether three monthly is now the better option. Apparently the first six do most of the hard work on our bones !!
Carolyn xx
Moijan
Member

Re: Bone mets - please join in

Hi ladies hope you all survived yesterdays very high temps?  Hope the eribulin people are all doing well and that the xgeva people arent getting much  bone pain! Im back on Zometa and fibd it suits me really well.

 

have a lovely day.

 

carolyn ...today feels like a chocolate day, doesnt it?

 

Moijanxx

Shanwoold
Member

Re: Bone mets - please join in

Hi!

 

I just had my 7th one too and experienced bone pain today. Not cool, becaue it reminded me of Taxol. I've had very little side effects from Xgeva, but I'm now wondering if the pain is a build up of the injection. Is it going to get worse? I took Tramadol today.

 

Thanks, Shannon

scratch
Member

Re: Bone mets - please join in

Hi Carolyn your a good dog sitter.your sons lucky...we have had nearly constant sun for weeks in Southend Essex..in fact its going to be 32
Degrees tomorrow.bit too hot for me..im sleeping on my own hubby in spare room both get better sleep and cooler.😃 sharonx