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Bone mets - please join in

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Re: Bone mets - please join in

Hello nicky and nanofthree

You both are such an inspiration to us here ..it's good to hear ..it's nearly two years ago now I sat in oncologists room to be told mine had returned after 11 years and I remember coming home and getting "my paperwork" in order so to speak. I'm still at letrozole stage but good to hear there are successful treatments to follow....although not so easy to tolerate ones !!

Anyway where is everyone ? It seems to be radio silence here from our regulars ..so stop reading and drop in and say hello ...
☺☺☺☺
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Hi Nicky.  No problem.  I have been reading up about eribulin.  I will mention it on Friday when I am at the hospital.  Do tell me, after,living with such a long time with mets , you since 2008 and me since 2009 do you get that dread that time is running out.  I so want to be here for my grandchildren.  I know I have been blessed to have these years but at 68 I want more!  My mum lived till she was 80 and I want some of that. Xx

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Hi Nanof3

I realise my reply was a bit worrying for you if you go onto eribulin. I have a friend with secondaries who has been on it a couple of cycles more than me and hasn't used the cold cap and although her hair thinned it's nowhere near as bad as mine - I just got unlucky as its not a chemo that states that you will definitely lose your hair. It is well tolerated and I have found it no worse than Capecitabine which I was on for for about 18 months back in 2013. But good luck with the current treament and hope it keeps working and your bloods don't get too hammered.

Nicky x

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Dear Bibi44 and Nicky 08.  Thank you for your replies.  I feel a bit better about the Paclitaxol now but will certainly mention the Eribulin.

 

good luck if you do go onto Palbo Nicky.  It has now been too bad, just mild fatigue plus of course the hair thinning.  At least it saves on having to sit there having IV chemo which is a real bonus.  Good luck to everyone changing treatment at the moment. Xx

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Hi Nanof3

I don't have any experience of pacitaxel, although have done its 'sister' chemo docetaxel, but that is a bit harsher I think. I have also been told my bone marrow could be getting compromised, maybe its because of the number of chemos etc that you and I must have gone through (I'm over 9 years with bone mets, the last 4 with liver mets as well).  I don't have any words of wisdom but in some cases a hormonal can be re visited (or at least I've seen it happen on this forum) so maybe it's not all chemo from here on in.  I'm due to come off eribulin soon, because of the bone marrow possibility (it hasnt actually been compromised yet but there's a feeling that it might) and go onto fulvestrant and possibly Palbociclib so it doesnt sound like its going to be any easier on the body and bloods in particular from what you've said.  Eribulin is another chemo that might be suggested?  It is a lot easier on the body than some and it does seem to be giving good results even if, like you and me, we've had several different treatments already over the years. I cope with it Ok but do need the gcsf injections on 3 days of the cycle and have used the cold cap (yuk!) but still lost about 50% or more of my hair and now have no eyebrows or lashes - great!  That has never happened before on any chemo so I'm quite surprised, I've always managed to hang on to them even when I've lost all my head hair. Hope this doesnt worry you but just wanted to add my experience.

Nicky x

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Nanofthree I didn't have too bad a time on paclitaxel, but I had the weeklies which are known to have very few side effects, esp not much bone marrow suppression. It's not like FEC or that type of chemo at all & my hair grew back whilst on it. I did do the cold cap though. The clue to the downside of weeklies is obviously in the name ... you are at the hospital every week. I used to have bloods on Fri & Pac on Mondays, to save hanging around, but it's wonderful to just keep living life as normal rather than being in that chemo bubble. I gather 3 weeklies are more like proper chemo. Good luck xx
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Bit quiet round here.

Autumn's here.

I'm 10 months from finding out I have bone mets. I am well used to the diagnosis now but it really has taken me this long.

Pippin

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Sorry Nano!! I haven't had paclitaxol. Let us know how it goes! Big hugs!! FF

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Hope you dont mind but one other question to everyone.  Do you know what happens after Paclitaxol?  In other words, can you revisit a hormonal or will i be on chemo for ever now?  Horrible thought.  Xx

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Hi Carolyn.  Hug gratefully accepted!!!!!!!!  I know it is a shock having the prospect of 'real' chemo.  I had such a rotten time with it 16 years ago when I had my primary.  Cant face the thought of it, let alone losing my hair again.  Ugh!!!!!   Take care. Xxx

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Hello nanofthree
Oh dearie me ..thought I would just say a Hello but I don't have any answers ( as usual) ....both funny face and still here have experience of this regime so hopefully they might be able to help.
Maybe you need to chat to bcn ( if u have one ..I don't! ) or oncologist. ...
It's always hard having to face the big guns chemo after taking the gentler treatments .
Sorry not much help but I will send a hug xxxx
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I havent posted for ages.  Just getting on with life but now I need some advice.  PLEASE!!!!!!  Into year 8 with mets to bone.  I have had all the hormonals, plus Capecitabine and have now been on Palbociclib and Faslodex for 18 months.  Feel ok on this, the main problems being fatigue and hair thinning.  Since April I have had four blood transfusions due to low red cell count, plus my

white cells always fall at the end of each treatment and have to be helped up again with gcsf injections.  The hospital say that because my bone marrow is suffering I will maybe have to go onto Paclitaxol, something I have been dreading.   Does anyone have positive experiences of this drug.  Also does anyone know of any other reason why the bone marrow could be compromised.  I have already gone downmthe leukeamia road.  I get blood results next week.  Just dont know where to turn.  Nanofthreexxxxx. Thank you.

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Hello ..Maldives
Just popped into wish you all the best for tomorrow and hopefully it will help and be a quick procedure .
Hope everyone is enjoying the beautiful sunshine here today ...Im off for lunch with Barton and Bon and yes cake will be involved .
Hugs xxx
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Maldives, The nerve thing sounds painful and annoying!! Wow, for being able fix it in 15 minutes. I would definitely sign up for that! You can do America!! I know your meds are making you tired but I'm sure this nerve pain and hubby not being home is playing on you too. Once your "Rock" is home you will be able to handle it! Depending on where you will be here maybe we could meet up. Wishing you the best with your procedure! Rooting for you!! FF

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Hello Maldives. .fatty fatty bum bum

I shouldn't worry too much with the weight at the moment if they are keeping you going ..I expect they will start reducing them soon ..
My hubs takes them for chest infections and he seems to balloon very quickly and eats non stop like a little gremlin.
I'm glad u have had the op explained to you ..sounds like it will b quick and u will be asleep mostly ..nerve pain is agony so if this helps ..then you will be a lot more comfy
If the chemo is knocking you for six ..maybe they would reduce the dose a little ? But I'm not an expert on these things ..
Hugs xxxx
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Hiya Alex
Yes guessed it was herceptin ..it's a magical treatment for lots of ladies that are her positive but sadly a lot of us are negative for it so have to rely on hormones /chemo.
I'm sure your posting will cheer up lots of ladies reading this though.
Xxxx
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Hi ladies. Thanks for your support. I know I'm stupid to Google things I should know better. I came across it by mistake then one thing lead to another giving me a terrible weekend of worry. I spoke to my onc nurse today and the metz they are talking about is in my jaw which I know about and has been there from the beginning although not so much. The treatment is for neuralgia pain in the face caused by pressure on the nerve.
From what I can make out I'm put to sleep then they wake me to see if the pain is still there then they put me to sleep again. Clever stuff. It only takes 5 - 15 minutes to do the procedure and there is no cutting involved. I think with that and the new chemo I was just overwhelmed. My hubbie is away too which doesn't help as he's my rock. I was planning on going to America on 20th September but there's no way I can go on this new chemo. It's knocked me off My feet. The fact I look like a sumo wrestler due to steroids is not helping with my legs. Size12 to 18 in two months. Hey fatty bum bum. Lol.
Anyway enough rambling. Thanks once again you lovely ladies. Xx
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Hi Carolyn

 

I have been on herceptin and tamoxifen for nearly 9 year now.  I am glad I checked back into this forum although it has been upgraded a lot since I last used it, there is a good chance that I will end up posting stuff in the wrong place.  😀

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hi carolyn,

I should be so lucky ,doing all the things you mention,must be heaven ,even thinking about it makes me smile so thanks for that as have not felt like smiling of late ,so shall now go and just visulise what it would all be like.

thanks reneex

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Hiya Renee
Thought you were on holibobs ..hence your absence. ..sunning yourself on a beach with a pina colada and having sun tan lotion rubbed on you by a very fit adonis !!! Ha ha ...
Phew ..that was a hectic week for you but hopefully it's all good ..
Hugs xxxx
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Hi Carolyn  and all other ladies ,

I have not been on for over a week as last week had herceptin and perjeta treatment ,which knocks me for six anyway then heart scan ,followed by c t scan ,plus radio therapy treatment scan and start radio tomorrow for 5 sessions so have not known whether i was coming or going ,plus not looking forward to r/t at all ,but hey if it helps all will be good ,its because breast is weeping and bleeding outwards so have district nurse calling again,to make sure everything is as it should be ,if honest i am quite scared of this outcome as not opearable and no cure just treatable so keeping everything crossed at once even legs when on loo,i should be so lucky as to have two legs as may manage it then .

take care and love to all 

reneex

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Feeling very cross and annoyed with myself ..thought I would do all my ironing. .last item ..a brand new shirt I wore once ..yes u guessed a great big iron hole in the front !! Can't remember the last time I did that ..can't even put a patch over it saying idiot or numpty !! So in the bin it's gone.
😭😭😭😭
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Hello Alex
How could you stay away so.long from us !! Glad you have checked in again and welcome back.
Wow ..you are doing well ...assume you have the benefit of herceptin as your treatment plan?
Hugs xx
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Hi everyone,

 

i have not not been on this site for years.  I just thought I would check in and say hello again.

 

I was diagnosed with secondary BC in 2008. I have 2 mets in my spine and one in my hip.    It's HER2 and E/R receptive.  The disease has remained stable.  I worked full time up until last year, I retired in November 2016.  It's sad to see that some of the old timers are no longer with us however I am pleased to see that there are some familiar names as well.  

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Hiya Maldives

Everybody has a unique pattern for cancer and yours is very unusual ...the procedure planned must be a good one as they wouldn't be risking it if they thought it was a waste of time.
You don't say whether it's going to be done under general or local anaesthetic. ....general sounds best
As u go sleep and wake up ...all done !!
Special hugs xxx
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Hi Maldives, please try not to look into "survival rates" too much, this cancer lark is VERY individual and not one is the same!
Good luck today, I hope things go ok and they can explain things to you so it makes more sense.
Hugs Janette xxx
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Hi Maldives, hope you get some sense out of your onc nurse today. You shouldn't have to find out about such things by reading a letter. I hope all goes well on Saturday we'll all be thinking about you.

Hugs Bon xx

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Maldives...try and ignore the 'survival rate' stuff...we dont know how valid the research was and anyway...it wont help to think about that!

 

hope tomorrow goes well...poor thing you have had a lot of things coming up!

 

yes I was on Taxol, made me tired...give yourself some slack and rest upxxx

drink loads of water thoxx

Mx

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Hi. I'm feeling really rubbish at the moment. I have been lucky with side effects and I'm ashamed to say quite blase about the cancer. Some say it's my way of coping but I just think I've been lucky not to have had bad side effects. My cancer is very widespread throughout my body in the bones. Now in my liver too. My worry is the metz in the mandible and dental nerve.
Reading up on it I didn't realise it's got a low survival rate. I just thought it was a nerve thing they were blocking. I'm going to speak to my oncologist nurse tomorrow to find out what's going on as there has been no mention of this till I got a copy of my referal letter this weekend. I hope I've misunderstood the letter. Oh well what will be will be. Femur nails are ok but legs are not working side effect of the chemo.
Sorry to blather on but I can't talk to my family about this one yet. Xx
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Jellytot Hope tomorrow goes well and you feel good being back amongst you colleagues
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Maldives
It's been ages since we heard from you and it's good to hear from you ..I think last time u had just started cape and you were feeling very energetic walking your dog!!
Wow ..that's pioneering surgery isn't it but if it takes the pain away ...you will feel so much better.
I personally haven't any experience of taxol as a chemo but others here will have .
How are the femur pins ? Are you mobile still when you are awake ?
Take care ..and don't stay away too long this time.
Hugs xxx
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Ops didn't finish that.my new chemo is pacl itaxel (taxol)
It's knocked me off My feet. I'm so tired even getting out of bed is exhausting
I'm finding it difficult to everything.
Have any of you ladies had this drug? What was your experience with it?
I'm also having problems with my jaw. I don't know if you remember me saying earlier in the year Carolyn but it now turns out I have mets in the jaw blnd which is being operated on in Southampton on Saturday. It's a balloon procedure to block the nerve to stop neuropathy pain in the face.
I. Really scared about it as it involves Neuro surgeons going across my main arteries with a needle. It will leave me with a numb face but hopefully pain free. If any of you ladies have experienced either of these things I could reply do with some support. Thanks maldives CD
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Hi everyone maldives here. I'm still alive and kicking been busy trying to stay alive with all different treatments. I'm on a new chemo for me anyway called paci
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Hello jellytot
Phew glad u can restart the drug again this week ..unfortunately being such a new treatment there isn't going to be much support with side effects ..I think you maybe might have to Google the drug and side effects/ results of trial etc ....
But we can help with a bit of useless banter here ...that's the wasp problem sorted ...please no reports to cruelty to wasps club but ssh I have an electric fly swat which I zap them with if they even dare to come into my house ...I have a little wasp cemetery on window sill now ....
Xxx
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Another wasp hater here!

 

Hope you are all doing as okay as possible. 

 

I cant remember if I said or not but my QT prolongation has gone back to normal so I am currently on my cycle of being off the trial drug. On Friday I start it again, they haven't reduced the dose which has surprised me as I thought they would have done because of my heart last time. I just have to trust they know what they are doing but it is very hard and worrying.

 

ive not been into work since my diagnosis in May, they have been excellent with no pressure to go back and just asking me to work from home as and when I can. I've decided to be brave and try and go back tomorrow. It's a very small office with only 5 other people in. I usually start at 8am, but having not been up at that time for a while, I'm going to go gently and start at 10am I think x

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Isn't it strange that something an inch long wearing a yellow and black jumper can petrify us ...when we are all living day to day with treatments and side effects !!
☺☺☺
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Yes...I am terrified of wasps tooxxx

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Hiya Moijan

Yep ..this thread has gone very quiet ...but with this weather ..wow why post here when we can all be out surfing ( or kayaking like ff)
The thing that spoils the great outdoors for me is wasps ..they are evil little devils ..I'm petrified of them so I've perfected my wasp dance now !!
Anyway. ..forgetting them ..have a good bank holiday ladies ...
Hugs xxx
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Hi Guys!

 

my apologies for the long absence. I was actually checking in regularly,but found very few people around for a while and ...became a bit busy elsewhere.

 

however, I think we all worry when one of us disappears.....makes us wonder if they are ok!

i am ok, but like Carolyn and Ff, find it hard to sleep and like ff I have been needing some space from my oh.

I do hope everyone is chugging along nicely?

 

 

MariaLouise, am so glad my words were helpful...life is a bit like that isnt it? I find that every so often someone will put something over in a way that really helps me......and of course on this forum we are lucky in having so many lovely ladies to chat with xxx. I hope things are going well for you now, am sure you will get some benefit from the drug too.

 

 I read some research about twentyfive years ago ( must be) by the 'Simontons' drs in the usa who ran groups for terminal patients and found that many of them lived far beyond expectations.....well we are a kind of 'group' 

arent we ladies?. And my guess is, this forum also extends lives.

Moijan💚💚💚

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Wow, great photo Bon. A definite plus side to the nights when we lie awake, I must check the sky myself when I'm lying there trying to get back to sleep. A good place to post it as its very uplifting and, as we know, we have a chat on the Bone Mets thread more than any so there's no reason not to share things like this. I have never joined the secondary private part of the forum partly because I think I'd have too many threads to try and track - it's busy enough at times on this part of the forum! 

Hope everyone is enjoying the sun this Bank Holday weekend, all the others have been a wash out if I remember correctly. OH and I had a great day at Carfest South on Friday, great weather which helped a lot, a good start to the weekend - now onto clearing out our bedroom and bathroom waiting for the builders to arrive on Tuesday - not so much fun.

Nicky x

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Hello bon
Lovely photo and yes ..as you don't sleep at least u saw the lovely sky ...
I had a good sleep one day this week too ...makes such a difference the next day ..never thought sleep would be a luxury !!
Xx
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There are few upsides to not sleeping well but sometimes you see beautiful things. The other day I looked out at 5 am to see Venus close by a slender crescent moon. Dawn was breaking, bats were still flying and crows were having their first morning squabble. This morning I looked out at 4 am and saw Orion low in the eastern sky - a sign that autmn is almost here. It didn't look quite like like this picture.

 

orion_Large-e-mail-view.jpg

Slept really well the night before last, can't remember when I last did. Felt so different yesterday.

 

This has nothng to do with bone mets. We used to post things that had inspired and moved us in the secondary private group but hardly anyone goes there now so please excuse me for postng here.

Hugs to all Bon xx

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Good morning all, 

 

I am amazed at all the breast cancer knowledge I have gained from this forum.

Thank you all who take the time to get this information and post it for us to read. 

 

I can't believe there are so many treatments oncologist use to help us live longer. 

 

I was diagnosed with secondry bone in March this year and was devastated but over the months this forum has helped me cope and I am more relaxed about the situation. Thanks ladies.

 

Take care out there and I hope the sun shines for you this bank hoilday. 

 

Crissy xx

 

 

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Thanks Nicky, that does explain why they had to wait quite a while to get these results through.  I am afraid I am a head in the sand kind of girl when it comes to my oncologist appointments and I just get the urge to bolt !!  I must be more pro active and knowledge is power but I am a complete disaster as soon as I get in the hospital.  So a big thank you to you lovely ladies .

 

The sun is out here this morning so I hope everyone has a lovely long weekend, out and about, in the garden or just winding down.

 

much love xx

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Well, I think between us all we managed to explain things 😊

The other thing I've learnt about the HER2 tests is that they do an initial test using dye which locks into the HER receptors on the surface of the BC cells. Depending how much dye is taken up will give an initial result between 0-3. If you get a 3 you're definitely HER2+ and if you get a 0 you're definitely HER2-, however a 1 or a 2 do mean it's inconclusive so they go on to do another test at DNA level which is the one that takes the time as I don't think all laboratories do this test. That result will give you a score (I don't actually know what the range is). Anything over 2.0 is deemed HER2 + I am only slightly over this figure (and it used to be that 2.2 was the cut off point) which is why the oncologists have determined I won't gain anything further from Herceptin treatments as I didn't respond well to the last one. I've only learnt this recently, about the score results but you can search online for these explanations. I remain hormone positive which is why these type of treatments have benefitted me the most over the years - well, and chemo of course!

Nicky x

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Thank you so much ladies I have a much better understanding of it now.  I think my her status was the test that took quite a while to come back as it was inconclusive,  eventually I was told + but I suppose only just if it took a while to decide.  I will chat to onc at my Oct appt.

 

Red riding hood I do hope if you have a treatment change you can still get out in the garden, you can disappear into a different world sorting out flowers etc.

 

take care everyone, much love xx

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Maria-Louise.........Like you I have been hoping that everyone is out there having a good summer! It has been a bit quiet lately. The weather hasn't been too good, but if things are booked then people go ahead, especially if it means going abroad. So things should pick up here at the end of Sept.

 

You asked about herceptin so I am putting my oar in. I am probably having a treatment change myself soon, but will have an MRI to make sure in a few weeks. I have been on letrozole + denosumab since 2ry dx 2 and a half years ago. All stable until now when a small change in the liver was spotted. I may now move to herceptin from letrozole......which has been easy for me.

 

Criteria for herceptin? You won't benefit unless you are HER2+ve and most 2dary people have a HER2 test at the start. Sometimes at crucial moments they will test for HER2 again, just in case. I had one HER2+ve result out of 2 biopsies at the start so herceptin was a possibility then, but I was stable on letrozole.....ER+ve 8/8 too......and lung spots vanished, so I stayed on that. Because of my possible progression HER2 becomes relevant again. So that is the first thing. Then the manufacturers......Genentech in US......trialled the new anti HER2 drug perjeta alongside herceptin and found a small but significant improvement when those 2 are given alongside chemo......docetaxel......for 6-8 rounds. Then the herceptin/perjeta continues for as long as it works. The trial was called CLEOPATRA.....acronym.

 

So....criteria involved are 1. being HER2+ve    2. herceptin is now taken with perjeta (pertuzamab)     3. docetaxel must be taken to start the herceptin/perjeta......unless the person has already had docetaxel in the past. In that case you can start without chemo.

 

It gets more vague in that the consultant has discretion with the chemo........if it is too hard then it can be reduced in concentration or in number of rounds. It just has to be tried. My onc has told me that. I am a bit worried at my age (70) and size (very small!) so he said it could be a lower dose, and/or fewer rounds. NICE has had to agree to the CLEOPATRA results of course.

 

I hope that is helpful. I am not an expert of course, and it is always worth looking further, or asking your onc. Everyone has different situations and needs. But most of what I have said is fairly accurate! It gives you an idea. Hope it helps and it is what you were asking about.

 

Out into the garden. If I start on docetaxel in Oct I won't feel like gardening so am trying to cut back a bit now! Take care everyone visiting the thread today!! Love to all,

 

mo       xxxxxxxxxxxxxx

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Oops ..sorry nicky and I posted at the same time ..nicky has done a better job of explaining things than me .
Xxc
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Hello Maria
Yes ..it's quiet here this week but maybe a good sign everyone is tickity boo.
Now for once ..I can answer your question ..herceptin is a treatment but only for HER2 positive
Tumours ..this would have been checked at your primary stage and you would have been offered this option if you met this criteria.
At primary stage ..chemo is given and then a usual 12 month treatment of herceptin.
At secondary stage ..chemo would be given first and then herceptin ( with perjeta) and this can be ongoing as long as it works ..some ladies have been on it for many years.
Hope this info helps Maria and best of luck with exmestance. .I have read it's the easiest hormone to tolerate ..
Hugs xxx
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Hi Marie Louise

Glad to hear you are feeling more positive, having progression (however slight) and a change of treatment always throws us I find. Once you get settled on the new hormonal you can hopefully have a breather. I agree that the hormonals can make you very achey though and feel like you are 97! I will be back on some form of hormonal in the next few months once I finish my course of Eribulin.

In answer to your question you only benefit from having Herceptin if you are HER2 +. I have had my HER2 status checked twice since developing liver mets and was told that my status had changed from negative to positive. However I have recently been told that I am only weakly HER2+ therefore won't benefit from having any more treament that is based on Herceptin.  What I do know is that all BC cells have HER2 receptors but it's only when tested you find out whether you have an over expression of them. If you do have more than is usual you are likely to be given Herceptin. All BC tumours are tested for this, you don't need to ask to have it done but you can get a biopsy done (if appropriate) if you ever want it checked again - as I did after 5 years of mets. The majority of women's receptor status, including hormone status,  won't change but it can do in about 15-30% of cases from what I've read. Hope this helps.

Nicky x