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Bone mets - please join in

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Re: Bone mets - please join in

Oh Sharon ..hope that u don't have to stop the chemo but sometimes you have to do what is right and how you feel.
Carolyn xxxx☺☺
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Carolyn if you get a chance see the show..our theatre in Southend is overlooking sea and cliffs so it was lovely I had a prawn lunch.then the show..weather is good here too....back to hospitsl tomorrow I need to get some facts about this chemo or the c as I'm not myself..im thinking of coming off it xxsharon
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Hello Sharon
Just to cheer u up ..remember your holiday ..well just driven to teignmouth, sat on front in hot sunshine and hubs eating cockles!
Then lunch at Ness overlooking Shaldon and the bay.
Think back and hope your hol memories cheer you up.
Carolyn xxx
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Hello ladies
Well we have some sunshine this morning again ...phew the evening's are dark so quickly now ..depressing.
Sharon ..just reading on another thread about you seeing the kinks sunny afternoon show ..envious ..they were my era and my favourites along with small faces etc. Showing my age now.
Luv to all xxxx
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Hi FF, glad it wasnt worst case scenario....always worth checking out. So pleased for you.

moijanxx

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Sharon, glad to hear you are now at home. look after yourself.

Debbie, its great news to hear you are a stable Mabel...long may it continue.

FF..a bit late posting but was going to urge you to bring your appointment forward when i saw you had already done it. Glad to hear it was good news.

Andrea, sorry to hear you have been having such a rough time but you have managed to remain 'upbeat'..good for you.

Best wishes to everyone. x

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Hello janebell
I think u must be talking about ibrance ( they all seem to have two names) there is a thread running as a couple of ladies are on clinical trials but I asked and was told that I did not qualify as you have to have had so many failed hormones and chemo.
Fingers crossed it will be licensed sooner than June 2017 as that's a long time away for most of us !!
Carolyn xx
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Hi I was diagnosed with invasive lobular breast cancer in February with extensive skeletal mets. I had 6 cycles of FEC chemo and am about to start localised radiotherapy. I am on tamoxifen as is Hormone receptor positive. I am waiting with interest NiCE recommendations re : palbociclib due in June 2017.although they don't have a good record for licensing breast cancer drugs ! Just wondered if anyone was aware of any UK trials or patients getting it ?

 

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Hi Janette making yourself known to the hotel ..i used to lay in sun for hours I can't now..cant even stand the sun on my head I wear a hat.glad you had a lovely holiday 😻 Sharon.xx
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Thanks Avrelia! I knew in my heart I needed to go! I don't know why I wanted to be stubborn! I hope you can convince your boss that you are doing fine! As long as you two get the job done they shouldn't care who does what! FF

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FF, so glad that you went to see your oncologist. To my mind things should go this way, better inform them ASAP about something and let them worry if that is the case, rather than worry yourself.

Sharon, yes, you are damn right that I worry about work because it is tied with my living arrangements, there is something else as well, my partner's English is awful, so that is why that type of job is perfect for us, I do the speaking, he does the physical stuff....What is left is to convince our boss that we are doing it just as good as we had before I was diagnosed....

Thank you very much for being here ladies, although none of us would like to be at that place in particular....

Carolyn, I bet that your hair is not as thin as mine, I have got some only on the top of my head and I do look like a partly shaved hedgehog, if you know what I mean, I shaved it when it started to fall down, but that string at the top came to grew back again in a strange shape:)

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Hiya FF
Well I will have to Google petechieu as I am a numpty but at least u have got yourself checked out and maybe put your mind at rest.
Hiya avrelia
Well hope u can keep well as having a live in job is quite a responsibility for you to keep working ..fingers crossed for you and hope u like yr new wig ..u will feel better wearing it.
Hiya Sharon
Sounds like u r feeling better but with Autumn weather its harder to fill the day !
Hiya Jeanette
Glad u had a good hol ..think it might b the letrozole causing the problem as I love love the Sun but a couple of times this year have had a wobble if I've sat in it for very long ..as my hair is shorter and thinner I've got this stupid straw hat I put on ..fashion police will arrest me !!
Well hello to everyone ..it's nice that this thread is busy again.
Carolyn xxxx
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Sharon hoping for an easy day for you! Janette, welcome back!

 

Ok, called cancer center and onc said to come in NOW! I then asked how about later she said NO, NOW! Left work and went to see her. She did blood work land platelets were fine, so was white count. It is petechiea but she thinks it is a drug interaction or from the sun.  Glad I went!

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Hi avrelia I'm glad you are still managing to work.but I suppose you worry that its tied up with your living arrangements.lots of people seem to manage work just give yourself lots of rest in between....love from Sharon.x😻
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Hi everyone,

Sharon, glad that you feel better, hope that your treatment will work well and blood will be not as bad as you worry it might.

Andrea, so sorry about the things you have to go through....I cannot immagine what my reaction would be, if I was at your place, hopefullly not, but you never know with cancer. We have to be gentle to ourselves and live every single day as if it is our last one. Yes, that might sound awful, but may be that is how it should be. Although this does not work for me, I try to live as if cancer is not existing. I get up same time every day, I work, I have an afternoon nap, then cook and wath TV. Our job with my partner is that we work in a hotel and we live here as well. On weekdays, we can go out but either one by one, or someone has to cover us if we both go out. Boring....you may say, may be, but it is our job at the moment and I cannot think of making any changes at all...

Anyway, I do not know why I am sharing that with you, may be because I have had the feeling recently that my boss is worried that I might not be coping well and she might not even want me here anymore, but thanks God for the time being I feel ok, just tired a bit, probably because og Chemoterapy....Would love to keep on working, as I have been doing it every sigle day of my adult life and that is what makes me feel alive, when I feel that I am useful....

As for my tretament, waiting for my firs Zometa with my fourth cycle of EC chemoterapy. Getting my wig this Wednesday, although I do not think I am going to wear it, but who knows....

Have not told my relatives yet, as I live in UK, and they live abroad, I see them only once a year. Do not intnend to tell them at all, unless it NEEDS to, i mean if I cannot hide it anymore...

I got lost with my own thoughts....

Anyway take care you all

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Hi ladies, back from my hols now, had a fab time! Weather gorgeous sooo warm. Did my party trick on the first day though and passed out! Just didn't realise how hot it was, we got up after lying in the sun for a few hours to get a drink and everything just went black next thing I knew I had bags of ice all over me! I'm a dozy sod, the same thing happened a few years ago in the canaries, I think as I'm getting older I just can't tolarate the heat the same. 

I have tried to catch up with the thread but there's sooo many posts so I gave up,  did see that you've had a rough time of it though Sharon, hope you're feeling better soon. Hope everyone else is doing okay. 

Hugs Janette xxxx 

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I agree Sharon,

 

would be nice, but not as effective I fear

 

 But hey ho, if it does the job. Drink loads of fluids...I now have a miso soup the day before and on the day as it seems to help...found the tip on the chemo thread on bcc.

 

love Moijanxx

 

but maybe you shouldnt have too much salt with your tummy prob, ..eg might retain flud..need to check it out with the ' oncle' firstxx

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Moijan I wish this inj was every three weeks.day one and day eight seems to drag it out more veins and hospital visits.xx😻
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Moijan.decided not to ask for I yet.as bloods so far have been good when I have blood test.they prob wdnt be good today as they will have been flattened out from Friday nite chemo..take care love Sharon 😻 x
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Yes, hope so Sharon, any news re filgrastim, or did you decide not to ask? I find my bloods come up really well with it...my other bloods, eg my liver functions are usually higher than the norm, but the lovely

'oncle' said for me not to worry, mine apparently react that way all the time to drugs...just hope the jolly old liver holds up!

 

we have to trust and go with the flow...dont we? thinking of you and hoping for great results...but on the off chance you needed a change, theyd likely find something 'new' for you to tryxxx

 

 

Love and hugs

 

Moijanxx

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Hi Nicky
Thank u for the comments on the letrozole brands ..I've only been taking "cipra" for five days and I have itchy skin, blurry eyes after an hour of taking them and more hair thinning ! Remember these se from when I had them six months ago.
I'm not going to accept them next month and insist on my " accord " brand again.
I took tamoxifen years ago and got the branded ones and arimidex was new and so got the original ones ...
Carolyn xx
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Hello ladies
Reading all your posts but as you know I don't have any advice as I'm useless but I can send you all the hugs I can and hope you all feel better soon.
X❤❤❤
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Thanks moijan bit weak and unsteady but hopefully bloods will come back up...i keep on this because of your good results...😻 xsharon
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Hi Sharon, great you feel better.

 

love and hugs

 

Moijanxx

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Hi ff..hope you get checked soon.you might just be a bit anaemic or something but get your mind at ease...
Andrea I did very well on cape a few years ago.and hope it helps with liver and brain Mets.

I feel bit better today ...i think.😂...take care everyone will post more later.xx
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Hi Andrea carts, so sorry to hear your bad news....there are a lot of us here with liver mets. Its quite a blow to get so many bits of bad newws together, especially as you feel so very well. capecitabine worked really well for my liver mets for almost two years. Barton has been on it for a longer period. Have pasted in the link for  the thread where Cape ladies hang out.

 

I do hope you find the best treatment and it sounds as if the bones are responding? I also have bone mets in the spine and am on Zometa, love and hugs

 

moijanxx

 

 

 

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-...

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Hi Funnyface, I agree with andrea carts.....as you are going to worry anyway. Sounds like you are referring to Petechae, which can also be caused by a variety of minor illnesses, such as an allergy( see mayo Website) but you wont feel able to rest till its seen, we have GPs here ( family doctors) so if the onc wasnt able to see me, id go and see my gp, but not sure about your health system.

 

fingers, toes and legs crossed that its only an allergy

 

love and hugs, Moijanxx

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Hi ladies

Definitely with you all on the different brands of hormone tablets! This has been a bee in my bonnet for years - ever since I was on Arimidex back in 2008 when my bone mets were dx. At the time Arimidex was still under licence so I got the approved ie researched brand every time. Then it came off licence and I started to get generic brands. The difference was really significant, lots of extra side effects that I had never had before. My GP changed my prescription so I always had the branded tablet. Roll on a few years and I'm now on letrozole, which is also out of licence so I get generic brands like everyone else. The one I started on, accord, was given by my hospital and seemed OK. After that I have had them from my local pharmacy and cipra has definitely been the worst. I have spoken to the pharmacist /dispensing assistant and I have nots on their file now to get me the 'right' brand so it is worth while speaking to your pharmacist if you get your prescriptions from a local one. I normally check my tablets before I leave the pharmacy and if it's the wrong brand I give it back and get them to get me the right one - if you do this before you leave the premises they can take it back and not have to scrap them.

FF, I think you should get the rash checked out even for some piece of mind. Maybe it's down to a change in laundry detergent? Or something similar? Or, have you picked up something whilst out and about? Waiting until your scheduled appointment will only cause you more anxiety, something we don't need!

Andrea, good luck with the brain rads, I have no knowledge to share with you regarding those. However Cape worked well for me for about 18 months and shrank or kept stable my lover mets.

Nicky x

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Andrea, Thank you for responding to me when you have so much on your plate. I don't have any info on liver or brain mets. I did take cape (which they call xeloda in US). I was in it for about 2 1/2 years. I didn't have any problems with it. FF

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Hi FF, Sorry you've got the rash,I'd push up the appointment. It may well be just a rash but you are going to worry. Maybe ring in the morning and see if you can speak to some one. Sorry cannot be more help but a big hug.

Andrea xxx
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Hello Ladies, I have been very lax in keeping in touch, holidays and sulking I'm afraid.  Last time I was on I was walking on air as nothing showing, what a difference a couple of months can make.

 

My Onc explained that when they looked at my bones scan again the little bit of a damage on my spine was two small bone mets  - when they looked back you can see them since the Jan scan but more obvious in July and Denosumab is repairing the bone (1/2 cm each) - Number One (ok, I can cope with that)

 

I was a bit worried that I'd never had a brain scan so Onc arranged one, not expecting anything as had no symptoms (ok I had been having headaches which I told her so she would do MRI but as soon as I changed my pillow they disappeared.....). 4 brain mets (one 2cm and three 3mm - well they were that size on10th August) - put on Dexamethasone in case of brain swelling and Onc will look at what chemo she'd like to do (that's bone and brain in less then a year). Seeing new consultant on Thursday to plan Stereotactis Radiotherapy to try and zap them. Onc was happy for me to go on holiday as small and no symptoms - Number Two (not so ok but so blinking glad I asked for MRI)

 

Back from holidays and went to see Onc on Tuesday to talk chemo, I'd got a copy of my blood as had Denosumab on Thursday. Liver results really bad, did ultrasound, multiple liver mets.  Had CT on Thursday and everything else looks ok for now - Number Three (freaking out now, well not too much though as I have plan in place.).

 

So I'm going on Capecitabine (is that what everyone refers to a Cape?) from Thursday and then have to agree between Onc and Brain Man what need to be treated first. apparently if your are on Cape in effects the radiotherapy, it really enhance what the radio does so it's hard to control the effects....... I'll let them fight it out and just tell me what to do when.

 

Feeling a bit like a druggy at the moment,what with D-Cal, Dexamethasone, Denosumab, Letrozole, Omeprazole, Zoladex, Capecitabine (soon) and the 11 vitamins I take each day I'm sure I rattle....

 

It maybe silly but I'm sill feeling quite ok about it all as they think they can do something about both bits......

 

And I haven't felt this well in years (I know), I've lost 14 kg (2 stone) since all this started in Oct 2014 (boy did I need to). I just bought a size 14 trousers for the first time in, well I cannot remember, and they fit with no muffin roll. I'm walking everywhere (not allowed to drive anymore because of brain mets) and last month had no side effects from Deno, Let or Zol but I know that's the steroids, just drop from 4mg to 2 mg a day (as my face was starting to ballon) so not expecting such a easy ride this month.

 

So that's my news, I don't like to do things by half do I!!

 

Hope you Ladies are all well, Sharon, been catching up on the thread and it sounds like you been in the wars but home now so hopefully staring to feel more yourself again.

 

Any advice from those of you who have liver as well much appreciated.  I don't think I've see anyone mention Brain Mets so I may have to go trawling through other forums to get a bit of info on those. 

 

Posting so late as cannot sleep,steroids.........  Always turn me into the Duracell Bunny on Drugs

 

Andrea xxx

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Developed  a new problem and kind of scared and worried. I have a red pin point flat rash on my lower legs. I noticed it a couple weeks ago and didn't think much about it. Today I googled it and found several things that can cause it. The scariest being leukemia. I did find that diabetes and metformin can cause it, I am a diabetic and on metformin.. Metropolol a heart drug and lasix combined can too. I am on the heart drug because, my heart beats fast and in the last 6 weeks was retaining fluid so back on lasix. Ibuprofen can do it too and I take a ton of it bc of my kness. Joint pain, night sweats, and tiredness can be symptoms of leukemia, but theses started last year within 2 weeks of my new treatment. I think if leukemia had started a year ago I would be very sick. Chemo can cause this rash too, but chemo can cause leukemia. The rash us petechiea, mg friend is a nurse and looked a it. 

 

My question is I don't have an appointment until Oct. 13 (the day before my birthday) would you want to bump it sooner or would you wait if out? FF

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Carolyn, if you were ok on femara, sandoz brand is. The same med. dont know about the other one, tho

 

xxx

 

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Hiya ff .
I'm fine today ..back to my self again .
Wow you have been busy but it's good to keep active and the old folk must love you and your activities .
Enjoy your week ..there's a nice latte in the cyber cafe if you want to drop by.
Carolyn xxx
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Moijan
Thank you for that info ..I don't think I have had Sandoz brand before ..ive got cipra this time and I hate it.
I think they all poo poo us with these brand changes but there is definately a difference .I'm going to ring chemist a few days before I collect and insist I get the accord brand or sandoz.
Carolyn xxx
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Carolyn, Sorry you are a little low. I'm usually upbeat too, but when I crash I burn! Had a crash last week and then my friend called and asked if we could come to her shore house! It was a bit of a physical push for me bc we had done a lot in the last week but I said yes! Had a great time! Let my hair down, slept in yesterday to make up for all the crazy activities that have been going on! 

 

Sharon, Hope you enjoyed your own bed last night. 

 

I might be quiet this week. I'm working on a country western day/ birthday party for the senior center this week. Plus we have a hoagie sale. Also working on an Octkberfest for them.The Oktoberfest is a fundraiser, so it's a big event. 

 

Every one take care of you.

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.

Hi Carolyn and all letrozole ladies. I too gave some welly over all this brand changing .

I was on Letrozole for 7 years including my time on the femara trial. When I came ff the trial my letrozole brand began to hop around all the time..I got side effects from some other brands.

 

Novartis's Femara was costed at £90 Per mnths supply...many other brands cost £2 so pharmacies are pressuredcost wise to get the cheapest version, which seems to change every month or so.

 

i discovered tho, that Novartis also sell Letrozole under Sandoz, one of their sister companies, this only cost £8 per month. It is exactly the same drug and I got no side effects. 

 

Just to demontrate to you it IS the same group....:

 

 

 

Sandoz Limited
200 Frimley Business Park
GB- Frimley/Camberley, Surrey GU16 7SR
United Kingdom
Phone: +44 1276 69 8020
Fax: +44 1276 69 8324
www.novartis.co.uk 

 

 

best of luck with it

 

Moijanxx

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Hi Sharon,

 

great you are home. Spoil yourself and enjoy being hom.

 

lots of love,

 

Moijan

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Thank you Nicky and Helen for the words of wisdom.  Have really helped me today.  Got back from garden centre and the sun actually came out so it was straight into the house and the shorts got put on again!  Got to grab every available ray to get the precious Vitamin D that my bones need.  Debbie xx

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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
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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
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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.

 

 

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

 

Hugs. Barton.x

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  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 

 

 

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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
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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

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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
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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
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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

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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