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Bone mets - please join in

nicky08
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Re: Bone mets - please join in

Hi Gem
Yes, these onc's do sometimes have a very bad bedside manner! Having said that it's not helpful the things that have been said to your Mum. I have bone mets, dx in 2008, very hormone positive (Er and Pr), had chemo which worked wonders! At the same time I had a local recurrence which also responded really well to the chemo. At my latest CT scan everything is very much stable, and bone mets healing, with my follow on treatment having been Arimidex. Obviously this has stopped working for your Mum and I understand, as in my case, they would want to try another hormone treatment before using chemo as there are always risks with chemo due to low immunity etc. If you are not happy with your onc's attitude or treatment plan I would seek a second opinion. As Laurie has said it is difficult to get a bone biopsy so status could be difficult to check but I have known of someone (on here) that has had it done and also ladies (again, on here) whose hormone status has changed.
Good Luck
Nicky

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Gem

Onc sounds harsh and unsympathetic.

Falsodex sounds reasonable to me as a first option.

She can't say what your mum would/wouldn't put up with. Chemo is no walk in the park but it's perfectly doable. As to how long it would give your mum, perhaps I could borrow the onc's crystal ball to see what is going to happen for me in the next few months!

Biopsy could be an option but bone mets can be tricky to get hold of (but not impossible)

Great that your mum has you as her advocate. What about going to one of the national centres for a second opinion?

Laurie

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Hi all,

Sorry to butt into this conversation, but I desperately need your advice and knowledge please?

A bit of background to this story first, my mum was originally diagnosed in 2000, she was stage 2 then, she had a lumpectomoy and Tamoxifen (worked for 3 years until she recurred locally in the breast), Arimidex (worked for 7 and a half years until it recurred as Stage 4 in the bone) and now Aromasin for four months that clearly hasn't worked as well as we would like! My mum is now 62.


So my mum had her ct scan results today and I officially HATE her oncologist.

Firstly the results, so her tumour markers are up from around 30 in march to 50 now.

Secondly her bone mets are larger, for example one grew from 9mm to 15mm.

But there aren't anymore bone mets that have appeared, just the original ones, and it hasn't spread anywhere else.

Mum was previously on Bonefos and Aromasin for the last four months. Now the oncologist is suggesting Falsodex.

However she (the oncologist) also said that after Falsodex there is only chemotherapy and:

"chemotherapy doesn't work well in hormone receptive people "

"Chemo would only give mum a few months"

"Chemo has side effects that mum wouldn't want to put up with"

Raaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!!!!

Well as far as I know (from what I have read and picked up on here) people don't die from bone only mets?

Treatments can be repeated?

I still think we need a bone biopsy to see if the cancer has changed its hormone receptive status? Has anyone had a cancer change in its receptiveness?

Has anyone failed a first treatment to find long term success with a second?

Mums oncologist is so like the grim reaper! Raaa!

Please share with me any knowledge you have?

Yours desperately

Gem

lucinda
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Re: Bone mets - please join in

hi
went to RM for results today after asking to go there for second opinion.As I had not been scanned or had tumours checked for 12 months I have been really apprehensive.Ct showed spine mets to be stable, and even better tumours in axilla have shrunk,so letrezole is doing what it should.Also saw surgeon so now know there is a possibility to have tumours removed by surgery.
Have to go back for ultrascan.bone scan and probably blast of rads to hip as i have a lot of pain in hip and leg.
I am so pleased I asked for a second opinion.Am now transferring to RM for treatment.
I echo what happyfeet said in her earlier posting.If you are not happy with your treatment ask questions and if you don't like the answers ask for a second opinion sooner rather than later.
Good luck to all waiting for results and hope treatments go well.
Lucinda xx

Magda
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Hi susie
Your post is the first one that I've heard mention of eye mets. I went to optician last week and had an eye test that showed Up a mole at the back of my left eye. They are making my doc aware of this because of existing diagnosis.
I don't know of it is more cancer but .....
How was yours discovered? I have more scans again at the end of this month it never ends does it!!!!
Magsx

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Dear Happyfeet and Trash

Take heart from all the postings on here. I have liver, bone and lung mets and had an eye met! I am now two years on from my secondary diagnosis and my last scan showed a stable position for the last six months....yes, the mets are still there but then so am I and nobody thought I would be!

I sincerely hope they find the right drug to help you both.

Sue xx

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Hope the week=end went well Julie.
Starting another 5 day course of radio, not looking forward to it but needs must. Hope it works this time.
Love to all
Trash x x

JulieD
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Happyfeet,
So glad you have got an onc who is being active rather than the one who did nothing! Sorry it wasn't all good news but at least action is being taken and hopefully now things can be controlled. I had rads straight after dx as one of the tumours was encroaching spinal canal, seems to have done trick and pain in that area lessened. My bisphos and Femara keeping things stable at the moment and that is the news us secs women want so I hope treatment helps you. Hope your weekend goes ok, it will be difficult but at least your children will know you are getting treatment and have not been written off. Take inspiration from awn and Scottishlass and others who have been living with secs for years. Hugs to you xx

Alesta, good luck to you too, hope referal goes well and you get the support you need.

Hope everyone has good weekend love to all xx

Happyfeet
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Thanks Dawn and wow, your own experience certainly gives me a boost. Fantastic.

Thanks Trash, and yes - I have been awarded DLA at higher rate thanks to MacMillan advisor, GP and District Nurse - can't fault them. Hoping you are getting your pain sorted and glad that Dawn has given you a boost too.

Thanks Laurie for responding twice! Glad you are getting DLA sorted - definitely we deserve to have it. And hope you get the support you need and deserve at the RM (with no stage 4 "look"). Amazing how the handling and manner of those we trust to look after us can make or break our morale.I know you work in the NHS. Having been a nurse for 30+ years it has certainly made me look at myself and how I have interacted with patients through my work. Not perfect but hopefully empathic and professional at all times. Having taken ill-health retirement only recently,I wonder if I will ever stop describing myself as a nurse.

Have a good weekend all

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HI Happyfeet.
Happyfeet, (I already posted this once but seems to have disappeared...)

Hear what you're saying and good luck with your conversations. So true what you have said about being in charge of your own care.

I phoned the Marsden this afternoon and just back from appointment with my GP to transfer my care there. There is only 1 BC onc at my hospital and I have decided I have had enough of the stage 4 stare (you'll know that one I'm sure!) GP also gave me a DS1500 form which I'll fill in with Mac welfare help.

Hope that the treatment gives you some ease and you will know that you have given yourself the best chance by not giving up.

Love and hugs to you and your family

Laurie x

dawnhc
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Thanks Trash. Sorry I do keep forgetting to say that DLA is for under 65 to commence a claim, and Attendance Allowance for over 65.

Dawn
xx

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Hi Dawn
What an encouraging post, it gives me great hope that i will go on for a long time.

Happyfeet,
I applied for Att. All. or Disability All. as it's know if under 65 and was awarded it at the higher rat. McMillan helped fill in the formunder special needs and my G.P. signed it. Do try, it makesa difference to ebery thing if money isn;t such a worry.
Good Luck at the week end
Trash x x

dawnhc
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Re: Bone mets - please join in

Hi Happyfeet,

I do indeed wish you the best of luck, and endorse everything you have said here. If you have doubts, are not happy with your treatment or your onc, speak up. It is hard sometimes when we are so vulnerable but we only get this one life and sometimes we just have to fight for it. Over the years - even under one of the best hospitals I have had to just that!

I am really glad you have got all I think you hoped for. What a difference it makes to have an oncologist who does listen and understands where you are coming from. He does sound great. Like you I have a lot of trouble with my spine - all areas of it are damaged and at least I have an onc who tells me the least change, or things that worry me I should get in touch straight away.

I remember in an earlier post you said about stopping work and the money worries that brings. Have you looked into claiming DLA (disability living allowance) under DS1500. It sounds like your onc will be sympathetic to that and will supply & sign the DS1500 for you. From what you say it sounds like you will be entitled to the top rate on both parts of it. (Sorry if you have already posted about this or looked into it)

I do hope the weekend with your son & daughter goes o.k. - it is always such a worrying time sharing with family our fears and bad news. Having lived with bc for 21 years now, and extensive bone mets since 2002 I hope I can encourage you to think perhaps you do have a few more years than you think right now. Hang in there - you are with a lot of who understand and will be here for you.

Dawn
xx

Happyfeet
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Hi all, just come out of hospital. Following second opinion at Royal Marsden 3 weeks ago,(they suggested Faslodex but stay at local hospital) I changed Oncologists at local hospital - totally different approach - he LISTENED! Had a chat about previous care, he seemed surprised that I was not on any treatment other than Bisphos.Mentioned the changes in sensation in my legs/feet (which I had told previous Onc about in September)- he said he has zero tolerance for such things so I was admitted for mri which showed tumour very close to cord in neck! FFS! That's a bit high to affect my lower limbs tho so more questions next week. Had rads soon after that evening - made the radiotherapist late home, had another blast today, having 3 more then chemo again - he wants to go in hard, none of this give up faffing as per my original Onc - but look at the time she's wasted. Am now home after horrendous night in EAU, strict instructions not to do ANYTHING, can't drive. Son and daughter coming this w/e. We are going to have a difficult conversation, shed some tears no doubt, then put it aside so that we can live whatever life is left to live. I am practical so want things sorted, I am realistic so know that a miracle is not going to happen but all not lost either. But things have progressed quickly and progressed a long way. Having another CT arranged so new Onc is up to date.

Moral of the story - trust your instincts. Get copies of all letters and reports. Ask, ask ask questions, challenge anything you don't understand or are unhappy with, ask for 2nd opinion sooner rather than later. And s*d to anyone who gets offended if you don't trust implicity what they are saying about YOUR life!

Wish me luck. And best wishes to everyone on here - you are fantastic people. Sharing experiences is so helpful - even the bad experiences. Forgive me if I repeat this on my "own" thread.

xxx

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Ah! thanks Laurie

Feeling a bit better to-day. life goes on and i intend to make the most of it fo as long as possibe.

Thinking of you Liz, show off thoser retty bras!!!
Love Trash x x

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Hi Liz and Trash.

Thinking of you both and hoping you get good news soon.

(((Hugs)))

Laurie x

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Just had my pre op assessment. Also saw surgeon who happened to see me in the corridor. Pop in after your assessment, he said. It will save you a trip next week. How cool. I had a booked appt with onc but wasn't sure why I needed to see him. One of the nurses asked him for me and he ushered me into his room and had a brief chat with me so he could get his notes in order and off I went home. My appt wasbat 4.30 and I normally wait a couple of hours to see him, I actually saw him just after 4 after a wait of ten mins. Result! I hope this augers well for the op lol. Ordered some quite pretty mx bras today. So all in all a good day.
X sarah

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Hi All,

Know how you feel Liz, saw Onc. to-day and confirmed that I need more radio on my spine and other hip.Only 5 weeks since having the right hip zapped.
Wondering how long it goes on before the cancer really gets hold.
Any advice will be gratefuuly received from all you brave ladies.
Trying to be positive but have a gut feeling that it's rampaging through my body.
Sorry to be negative, expect I will feel better in a few days.
Trash x x

Lucy_BCC
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Re: Bone mets - please join in

Hi Liz

Sorry to read you are having such a worrying time, feel free to call our helpline to share your worries and offload a little if you feel it would help, the lines are open 9-5 today on 0808 800 6000.

Take care
Lucy

lizH
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Re: Bone mets - please join in

Hi to all,

Having a real wobble at the mo! I was diagnosed in april with bone mets in pelvis and low spine. Had all my treatment , the last one being an op to remove ovaries.
Feeling very weepy ( ggrrrr to hormones) and have a CT scan (monday) and appt with onc on wednesday.
Today i woke with a pain in the top of other leg and my mind has gone into TOTAL overdrive.
I am sure it is stress of the scan but feel like my emotions are back to April 😞
Wishing everyone well with their results/ appts ect.
Any feed back would be great
Thank you
Liz xx

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Thanks Nicky, I am hopeing that it is because of how I have been walking. Will let you all know.
Trash x x

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Hi Trash

The pain in your other hip may be due to you maybe walking/moving differently with the affected hip hurting you. I had a proximal femur replacement earlier this year, I have no pain at all on that side, but the other side often hurts, due to my walking/lurching with more difficulty.

Hope it's all good news Tomorrow!

xx

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Hi every one,
Hope yo are all ok, bit concerned as i have to see the Onc. tomorrow
as I have some pain in my other hip(radio on right hip a few weeks ago). Hope that it isn't a sign that treatment isn't working.

Fingers ctossed for tomorow.
xxx Trash

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Hi girls

I was away for the weekend in wild, windy Scotland, beautiful but a bit isolated on the far west coast at Stranraer. Glad to be back in the Lakes again.

I am waiting for scan results on Friday to see how things have been since my last scan 6 months ago - fingers crossed for a stable situation at the least!

I really must pick up and finish my knitting that I started TWO years ago! But I also have 2 Roman blinds to make so I must get motivated somehow.

Sue x

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Good luck Sarah - Hope all goes well and please let us know how things are going.

Val you have bee busy over the years. Good to hear the vampire stuff is picking you up.

Another one planning my next few weeks knitting once my brain and fingers can get it together LOL

Have a good day all whatever you're doing!

Laurie x

belinda
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Just popping in, yes it has been quiet. I've been putting my laptop away when it's switched off so I've not been visiting the site as often as I did but just wanted to say Good Luck to all with operations and appointments looming and thinking of all struggling with side effects or about to start a new treatment.
I'm feeling well, I'm still with Xeloda and busy Christmas knitting...lilac mohair sounds beautiful Val and I'm off to 'google' ascot scarves. 🙂 Edited to say...now I know..I do the Baktus pattern (Ravelry) quite often.
x

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Good luck Sarah
Hope all goes well
Trash x x

scottishlass
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Hi Sarah, I had a mastectomy over 22 years ago and its still looking good. Nothing to be afraid of. You will be fine.
I have just ripped back my knitting that I started weeks ago in a beautiful lilac mohair. Dropped a stitch, tried to pick it up but as it is a lacy pattern I was losing more and more stitches, got frustrated, decided it would be easier to start all over again. Mind you I had only done a few inches! Then a few days ago I visited another knitting wool shop and bought another pattern and another large ball of wool. Gonna be busy. Hope your op goes well sarah. Will be looking out for your posts. Hugs Val

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Glad you feel so much better Val. It has been a bit quiet.
I am trying to calm down a bit as I am stressing a bit about my up coming mx. I have waited so long for it to happen but now reality has set in. I am trying to be an ostrich. So, have knitted a few ascot scarves, a matching pair of mitts and my teapot is about to be very smartly attired in a new tea cosy.

X sarah

scottishlass
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Sorry not been posting but have just read through all your posts and sorry to hear that there are still ongoing problems for a lot of you. If I can help in any way please just ask as I have had lots and lots of treatments over the years.
This week has been busy for me. X-rays, Radiotherapy, Consultant appt, blood tests, flu jag, Hygenist appt, Bone strengthening, Breakthrough pain etc etc.
I am whispering this next sentence "I feel great today. Pain free, calm, feeling good". Cannot tell you when I last felt like this.
Next week is less busy. I go to the Orthopaedic clinic to have yet more xrays and to see the surgeon who did my operation last month.
Hope you are having an Okay weekend ladies. I have been absent but I have been reading your posts when I can.
My energy levels are improving thanks to my recent blood transfusion. Hugs to all, Val

Happyfeet
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Thanks Julie. Have sent you a PM. Hope things ok with you at the moment. This thread seems a bit quiet at present - thinking of everyone, read all your posts, starting to get to "know" some of you. Wish I had a magic wand to make everyone better x

JulieD
Community Champion

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Happyfeet,
Glad to see you posting,have been thinking about you. Sorry it wasn't better news though. However, as Alesta says they didn't say no,relatively unusual can still hold hope.Not had the treatments you've talked about but know several women have been well with Faslodex after other hormones had failed and also hear positive things about Carp. Hope you get your other appt very soon, waiting just adds to all the stress - good luck with treatments, try to take one day at a time, sometimes thats all we can cope with.
Julie x

Happyfeet
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Thanks Alesta. Have sent you a PM x

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Hi Happyfeet

So sorry to hear your news. Haven't been on Cape yet though expect to be at some time in the future. No doubt there will be some women with experience along with helpful advice soon...

Hope Faslodex works out for you. Day at at time - you know how it goes though I know it can be so hard to stay in the present. "Relatively unusual" isn't a "no" - hold on to that - you never can tell.

Hope you're getting support and hugs at home.

Virtual love and ((((hugs))))

Laurie x

Happyfeet
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Hi everyone. I'm still playing the waiting game. Copy of letter from the Marsden came yesterday recommending Faslodex to slow down my extensive bone mets BUT - also says that rates of disease stabilisation with further hormone therapy are relatively low (already had Anastrazole + Exemestane). Also says unfortunately further responsiveness to chemo in the metastic setting is relatively unusual but could try Capecitabine, Vinorelbine or Erubilin at some point. Too many "unfortunatelys" in the letter for my liking.

Thing is, I know a few of you ladies are on long-term Capecitabine and other chemo with good results. I had Capecitabine with my initial chemo as part of a trial (along with AC and Tax) so the Onc at RM said that because I have had rapid relapse since initial treatment, my outlook is not so good. I went to the drop-in centre at the local hospice yesterday and whilst everyone was lovely I broke down when the chaplain appeared as it hit me hard that what is happening is real, and I don't like it one bit! I haven't been on any effective treatment for nearly a year now and don't know if or when I will start the Faslodex or if it will work.

Am still ploughing through all the posts on here, so roller coaster of emotions really - it's great to hear the good news, but so scary to read the not-so-good. Hope I haven't depressed you all with my gloomy post! Have just spoken to the BCN to see if my appt with different Oncologist at my local hospital has been sorted out - not yet, more waiting...Love to everyone x

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Just finished an Icelandic sweater. Am knitting mittens for Christmas presents although I suspect that I won't be able to knit much for a few weeks after op. I am doing fair isle patterns and generally making it up as I go along.
Thanks for your good wishes. I am going to have a busy time pre op as I plan to be out and about as much as possible. Also trying to eat more fruit and veg to be as healthy as poss pre op
X Sarah

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Sarah, I hope all goes well with your mx op. I was so scared before I had mine but the reality wasn't bad as I had imagined. Wishing you all the best and a speedy recovery. What are you knitting at the moment?

Sue xx

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Annie, glad to see you posting and to here that treatment underway. It probably is the steroids giving you a boost but wahtever, enjoy it. Also glad to hear that you are getting pain relief sorted out, bone met pain is awful andm, the way it suddenly seems to appear out of nowhere, just terrible.

Thinking of you often, Sue xx

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I had my weekly paclitaxel first infusion yesterday. It went absolutely fine. I had my picc line in on Wednesday, so it was nice to have that ‘cleaned up’ as they don’t like to change the dressing until a couple of days afterwards. My Hb and platelets are pretty low, so I’m going back on Monday to have my line bled and to see if I need another blood transfusion, because of my low bloods I only had ¾ of the normal dose too. I actually feel better this morning (the morning after) than I have in a while. I don’t know if its because of the steroids etc they give you before infusion, but I’m enjoying resting easy. I wonder how long it takes for this chemo to kick in. My onc has told me if I’m still having pain in a few weeks time I’ll pause chemo for some radiotherapy but because of my bloods dropping it was important to get on with chemo straight away. This treatment will literally be saving my life – that’s the plan and my onc seems pretty convinced this will help me.
I had my bone marrow biopsy on Wednesday too. It wasn’t painful at the time, but having just had my picc line inserted too it certainly found it traumatic. I think emotionally I’m running low, but I’m glad its behind me and I’ve absolutely no idea what the results will mean for me. I’m just pleased to be getting on with treatment. I’m pretty wiped out at the minute, emotionally, biologically, almost every way, but I think I’m finding the right pain killer combination for me. I’m just resting lots and hoping to get through treatment and watch myself get better. I’m lucky I’ve got lots of people around me to look after me and cheer me up.

Hi Sarah,
Good luck with you Mx. Front fastening bras are definitely the best, but be religious with your exercises and back fastening ones won’t be beyond you for long. My anc bothered me more than my mx, I was surprised at how limited my mobility was but if you keep on top of your pain, keep up with the physio and rest rest rest and it will all come together.

Annie xxx

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Thanks for that. I shall have a look
X sarah

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Hi Annie

I have been thinking of you lots and hoping that your team were getting things under control for you but see that you are to have Taxol to start with. I have had that and it does seem to work very well for many people so I will have all my fingers crossed for you.

My very best wishes to you and all your family, love and hugs Sue xx

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Hi Cromer

Re bra's. I purchased a couple of front fastening post op bra's before I had my MX. I would recommend them to anyone having a MX as they are very comfortable and easy to get on. They have pockets so you can start with your 'softie' sooner rather than later. My BCN gave me my softie a day or so after the op and made me put it on straight away. I got my bra's from Nicola Jane on line. I find the Royce brand suits me best. Nicloa Jane are very efficient at dispatching orders, my stuff always get to me within a couple of days.

Hope this helps.

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Fantastic Julie!!
I now have mx op date, 16th nov. SEs not so bad now, basically it was probs with digestive tract. Have drunk a lot more water now and feel ok, day9 having taken dose of navelbine yesterday. Cromer tomorrow so will pack tonight.
Scared about op... Even though I really want it and have been waiting over a year for it to be a possibility. Has anyone any advice for me? I have bought some front buttoning pjs, but what about bras?
X sarah

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JulieD
Great news - keep grinning!

Annie,
Hope things went ok with the Picc and that you're on something thats controlling the pain.

Hugs to all

Laurie x

Lemongrove
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Julie, just to say how pleased I am that your CT showed no progression - long may it continue.
I'm going for my six monthly CT and bone scan on the 27th October, so keeping my fingers crossed for the same result (cough has now disappeared so hopefully nothing to worry about there).
Lesley X

belinda
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Oh that is good news Julie! So pleased for you. 🙂 x

JulieD
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Happyfeet,
Thanks for update, have been thinking about you.Glad the Marsden have suggested a treatment for you, not had faslodex myself but know a couple of women who have, yes it can sting your bum a bit but they say it's worth it as have seen good results so fingers crossed for you.

Annie,
Sorry you've been having a bad time, hope treatment sorts it quickly for you and pain decreases, it always seems worse when pain kicks in so I really hope things have improved.

Had my results from 3 monthly CT and no change! So another stable Mable with a daft grin!

Hugs to all xx

Happyfeet
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Morning all. Just to let you know that I went for 2nd opinion at Royal Marsden yesterday - they were very understanding and have suggested I try Faslodex for my bone 2nds (as AIs not working). It has to be approved by my local pct so more waiting. I understand the injections can be painful - anyone had any experience? if it helps tho.... So feeling a bit more hopeful. Am not transferring my care to RM at the moment, but will ask to change oncologists at my local hospital. Best wishes to all

myfanwy18
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Hi Alex, I was so glad to read you were a stable mable to. Hope more ladies on this site get to that stage very soon.

Myfanwy

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Hi Annie,

Sorry to hear that you are having tough time with symptoms. Taxol is a good chemo and works well for a lot of people. I had it 3 years ago, with herceptin. I had tax every three weeks for six months. I am now on indefinite herceptin. I thought I read somewhere that your disease progressed whilst you were having a treatment break, although I may have dreamt this.

The taxol, herceptin and pamidronate combo has worked well for me and I have been stable for nearly 3 years now. I have bone and liver mets.

hi myfanwy, good to hear you are doing well.