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Bone mets - please join in

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Re: Bone mets - please join in

Hi Fergal, my primary was Feb 2007 and secondaries (mets) March this year.
Janette x x
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Morning all hope your all well and test results are good today x
Can I ask everyone a question please out of interest, how long has it been for you since secondaries dx.
Thanks
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Morning ladies,
Helen, good luck with results today, thinking of you.
Hi Chocolates, nice to hear from you, don't be working too hard!! Good luck with your treatment.
Hi and good luck to having results, treatments or results today.
Oh 3wks today to christmas day and still so much to do!!!! Yikes
hugs Janette x x x
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Good morning everyone
Helen, wishing you well for your results later today.
Chocolates, hope treatment goes well and that you're not too busy at work on Friday.
Hopefully everyone else will have a good day too.
LD x
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Hi ladies, just a quick drop in to wish Helen good luck tomorrow with results. I'll be thinking of you as I'm at hospital having treatment also. Have pm'd Sheila so fingers crossed.
Hello everyone - it's taking me longer and longer to catch up - can't wait till the holidays when I can rejoin you all again daily. It's so hard with work but I feel much more content when I've read your posts, laughed, cried and shouted when appropriate - thus the late hour as I won't be able to post till later tomorrow.

Hi to the newbies - huge hugs lovely ladies. Good luck everyone else with results/treatments/scans tomorrow or Friday.

Hxxx
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Thank you Tracy xxxxx
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Helen just want send all my best wishes for your results tmo il being thinking of you xxxxx
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Mowser, luckily my dog is fit and healthy but my last dog had cancer for 6 months before he died and we wouldn't leave him alone for a second. It's funny how we treat them like little humans isn't it. The thought of giving the suppository made me giggle, he'll never forgive you! Lemon drizzle is my favourite cake and friends and family brought me flowers and cake so much at the beginning that I began to look like one - it's a good job I couldn't eat any during chemo or I'd have been the size of a house! Hope you have a fab time watching and singing along to Peter Gabriel, saw him not too long ago and he was fantastic.
LD x
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Dad's having a bad day, the oncologist has scared him and told them he knows someone whose lasted 6 years on the treatment mum is getting. Poor dad now thinks she'll be lucky to last that long can't believe he said that to them
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Oh liz,huge hugs coming your way ,we all are hoping you'll be okay for Friday xxxxxx

Bev,glad you getting a reduced dose ,hope this will be kinder to you but kicks Cs butt.,The lion king is fantastic ,costumes out of this world,you will have a fab time and if like me cry at the start and end xxxxxx
Huge warm hugs on this very cold and frosty day to all the lovely ladies on here,Helen xxxxxxx
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Hello, Liz, just dipping in to this thread, but couldn't resist telling you how good the Portacath is. It is marvellous - everything is so easy with one of those. Good luck at assessment! Best wishes, Barton.x

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Hi Lemon Drizzle,

 

He is much better, thankyou for asking!

 

He was very clingy all day yesterday, think it really distressed him, he didn't know what was going on!! We just have to keep an eye on him. If he has another one, we have been given Diazepam as a suppository that we are supposed to shove up his bum (while he is fitting, I hasten to add), and take a video too if we can! That should be interesting!!!  Has your dog suffered with epilepsy too?

 

So, he and I had a duvet day yesterday watching a lot of TV, hot water bottle, copious cups of tea, and of course, the pain killers!! Smiley Sad  He aslo had a brand new bed, made of memory foam, which looked really comfortable and snug!! 

 

Off to see Peter Gabriel in Wembley tonight -first night out this week, and I really need it...And tomorrow to Oxford for a Living with Secondary Breast Cancer conference...

 

Have a great rest of the week and weekend-love your pseudonym by the way!!  Makes me feel like cake every time i read your posts!!

 

Love and hugs

 

Mowser xxxx

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My fingers are crossed Liz.
Hope you get some wonderful results Helen.
Good Luck Bev and have a good time watching The Lion King.
Hope everyone is warm and dry....x
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Mowser, I must have missed your post yesterday but am wondering how Archie is. My dog keeps me going through all this and I know how scary yesterday must have been for you and him.

Liz, no wonder you're fed up. Fingers crossed for Friday.
LD x
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Will keep fingers crossed for you too Liz xx
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Hi fergal jay just reading Nicky's post and just like to add with my primary I had quite a few tumours and one was quite large so I had 8 doses of chemo first then had the surgery then radiotherapy. So everyone is different also had stomach injections as they were trialing them in my area at the time and they were no problem at all. Good luck to your mum and be honest with each other as much as you can x. Janet
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Fergal

I'm another with mets (bone) who hasn't had a mastectomy or lumpectomy ... just chemo.

18 months on I'm writing this from work (full time, out of the house for 12 hours per day) and on oral chemo (Capecitibine), still enjoying life ...

 

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Hi ladies,

Bloods are STILL low !!!! Fed up big time!! They are on the up so if everyone crossed their fingers I think Friday is a promise!
I have my assessment for portacath tomorrow so I will have been at the hospital 4 days out of 5 !
Must keep positive. I think I will have a reduced amount too Bev.

Christmas tree up tomorrow , that will cheer me up.

Love to all.
Liz xx

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Just come home from clinic...was sat in consulting room and doc's head appeared around door, he looked at me and said "oh you came back then?" What a joker! No..he was very sympathetic and is giving me 75% on friday. He ssaid most get that anyway and that he rarely gives 100%. Gee thanks doc!
So full steam ahead for friday and lets hope to goodness i can get to see Lion King a week friday!
xxxx
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Fergal, forgot to say that originally (back in early March) I was due to have mastectomy but as mets were found at same time that was cancelled, however the surgeon said then, and again in July, that he is thinking about operating but a lumpectomy instead. Not seen him since- should be soon though- but hope this reassures your mum.
LD x
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Good morning ladies another lovely day but very frosty outside.Got a busy day today running a few errands and then visiting the mother in law in the nursing home which is hard work even having a conversation with her as she has dementia.hope you're all doing ok and good luck to all who are having treatments,scans and results this week
Take care all
Kaye xx
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Good morning everyone

Nicky, what a wonderful answer. I couldn't have replied so well in a million years.

Fergal, your mum's treatment plan sounds similar to mine. I've not had surgery so it is normal procedure, they're not giving up on her at all. I had a reduced dose of Docetaxel and had the injections but had them in my arm or leg as I couldn't face any more in my stomach after the first one(such a wimp). I now have Herceptin but intravenously and Pertuzumab and,if that is what your mum is given, has good results. Once she starts treatment you'll find out a lot more information.

Bev, hope your appt goes well and doses and meds sorted for Friday.

Helen, you sound like my daughter as she absolutely loves Frozen even though she's all grown up too!
LD x
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Good morning lovely ladies.
Fergal,I can't add anything which the other wonderful ladies have said. Belinda ,Dawn and Nicky are a wealth of experience and information.we all wish you mum good luck. Once she has started her treatment she will feel in control .

Well,it's soooo pretty outside as it's all frosty. I think watching Frozen again did it lol.
Hope everyone is okay.
Bev,I hope you get a reduced dose this time and don't end up in hospital again.

Faraway,how are you doing as you have been quiet for a while,I hope your not back in hospital.

Well Christmas tree is up,thought I better get it up before tomorrow's results.
Huge hugs,Helen xxxxx
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Just to add to Nicky's great post, even though I've now had it at least twelve years my primary is now just a small lump of scar tissue.
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Re: Bone mets - please join in

Hi fergal jay, I have seen some of your posts regarding your mums diagnosis but haven't so far had anything extra to add that other ladies have already said. However I do have liver mets and am HER+ as well as currently being on chemo so may be able to add a bit more to the good replies you've already had.
I'm on one of the taxanes, docetaxol, which is also called Taxotere to be more confusing, and this can be given with Herceptin as well as Perjeta which may be the other drug that you mentioned. This (Perjeta) has to be applied for and agreed by the cancer drug fund and is only given in this combination. I haven't heard of Herceptin being in oral form at all although there is another drug, Lapatinib, which is an anti HER+drug but not normally given with IV chemo. I am on a 80% dose of Taxotere and have coped better with side effects than some others on 100%, this was because some of my liver function test results were a bit high when I started the chemo. I haven't needed any of the bone marrow boosting injections and my immune system has been fine throughout my 5 doses I've had so far. Normally, wih a course of 6 treatments, your Mum will have a scan half way through ie after 3 doses, and then a decision can be made to change the chemotherapy drugs or to continue for the last 3 doses. A scan is usually given at the end of the 6 doses/cycles as well.
If secondaries are diagnosed from the beginning, ie with the primary breast lump, the secondaries take priority with treatment so it would be unusual to operate on the primary first. This is, I understand, due to the body taking time to recover from surgery which in turn delays the start of any other treatment such as chemotherapy. Your Mum should definitely not think she's been written off just because surgery isn't happening. As it is chemotherapy treats the whole body so will be effective on her breast lump as well, this may make surgery a possibility later and be less intrusive. When I was diagnosed with bone mets 6 years ago I also had a local recurrence, I didn't have surgery as I went straight onto chemotherapy and the lump has completely disappeared and has never showed up on any CT or MRI scan since.
I think all your other questions have already been answered but if you want any more info please keep asking us, one of us is bound to be able to help.
Take care, all of you.
Nicky x

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Glad we could help and i wish mum all the best with her treatment and sending love to both of you.
Sometimes by operating you can make the situation worse and her Oncologist will know what's best for Mum so don't worry too much about that.
The stomach injections are painless and are given to stimulate the bone marrow into producing more white blood cells quicker...because the chemo will wipe them all out. By giving mum the reduced dose means she may not need this.
Lots of love...and hope all goes well. Xxxx
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Hi dawn, belinda and bev thanks for responses. Mum and dad do meeting last together and are very honest so don't wanna stress them anymore than they are. Thanks for the info and hopefully it'll all be very successful and mum will react ok to the chemo. She's happy she's starting before xmas and that treatment is beginning as she was worried they were just leaving her. The knowledge that they won't operate is scaring her as she feels that theyve given up on her a bit.
Well we keep outer fingers crossed and support her that's all we can do, she is favouring the idea of the reduced dose as they've said if sheshaving full dose she will have to have a week of stomach injections beforehand.
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Hi fergal....youre clearly very concerned about your mum and although i dont have liver mets I'm due to have my second chemo on friday for lung mets.
The blood tests are usually liver function test, bone profile, full blood counts to check white and red blood cells and tumour markers.
I take steroids like mum for the same 3 days...dexamethasone. its essential to take these as tthey stop the side effects of the chemo. She will probably be given anti-sickness tablets like Metroclopramide.
My Onc mulled over giving me a full dose or not to begin with (Docetaxol) but decided to give me 100% because I was so well at the time. Giving a reduced dose ( 70 or 80% ) doesnt stop the effectiveness of the chemo.
She may be having Taxotere (which is docetaxol) like me or Taxol. Then may be given Paclitaxel. I cant think of any others sorry. But all of these belong to a group called Taxanes which are very effective.

I've not had herceptin as I'm not her2+. But i have heard that giving herceptin together with chemotherapy is again a very effective regime.

I hope this has helped you but maybe some of the other ladies can advise as well.
Love and hugz.. bev xxxxx
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Hi, will try to answer some of your questions and expect you will get much more info after me. 🙂
Here's the Macmillan link to the usual chemotherapies offered for secondary bc,
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Breastsecondary/Treatingsecondarybreastcan...
Steroids are, I think, given with chemo to lessen side effects, sickness, can help with your appetite and can help make the chemo more effective.
I'm her2- so no expert but I still have my primary tumour and was diagnosed with bc and bone mets ten years ago.
X

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hi fergal - I will try and answer some of your questions.

 

Blood tests are always done prior to chemo to make sure that all is well, especially as treatment progresses as the chemo knocks out a lot of the good cells and it takes them a little time to bounce back. Chemo would not be given until they had. Yes some hospitals will also do tumour markers.

 

The steroids (dexamethasone) are given to prevent nausea and also any allergic reaction. It really is very important to take these as directed but one word of warning - the last dose of the day needs to be take early or she will be buzzing all night.

 

This is the first time I have heard of being offered reduced dose of the first one - personally I think it is an excellent idea. Taxotere is a very strong chemo and most people find it pretty gruelling and need dosage reduction as they go on. A lower first dose might help the body adjust or indicate if it could tolerate a full dose. I am not sure what the P one is. Herceptin as a pill is fairly new. It is normally given intravenously. I have found over many years that I never had any side effects from herceptin.

 

It sounds like the new drug they are talking about could be kadcyla which is currently not being offered by the NHS (too expensive) so is being funded by the Cancer Drug Fund but not for much longer as they have said they are cutting out the 25 most expensive ones. But that would only be given if there was progression on herceptin. It is in fact herceptin + a chemo - so herceptin targets the her2 on the outside of the cancer cells and carries the cancer element to release it into the cells.

 

I hope all of this makes sense and I am sure others will be along and fill in the gaps. So do ask if anything isnt clear. It is hard when you want to be with your mum,  but she takes dad with her. Does she know how much you would like to go - maybe ask dad if you can take it in turns.

 

Dawn

xx

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Sorry for spelling lol its this daft phone x
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Ok all I'm in need of some advice and knowledge. Just as a reminder mum has bc with liver mens. Today was her first oncologist appointment after full diagnosis. The help I need is mum never let's me.go with her she takes dad so I get all my info second hand lol

They've said that the plan is blood test Thursday (would you say this is for tumor markers?)

They've given her steroids to take day before and 2 days after chemo - would you say this is for immune system?

The first chemo she has been given the choice of a full dose or partial dose, anyone else bin given this choice?

Her herceptin will be in tablet form and she will start that at second chemo - anyone had this before?

Chemo wise dad said she will have 3 dresses of one that starts with T??? And then ct scan and if all goes well she will have 3 doses of one that starts with P???

We've also been told she is eligible for a new drug but it depends if they accept her and they'll fund her, not sure what this just it's apparently better than herceptin so fingers crossed

The really disappointing news we had is they won't ever operate on her not even on the bc as they're more concerned about the liver.

If anyone wants to help fill in blanks, give any words of wisdom or share similar experiences please do. Sorry if it's a bit of a rambling post
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Forgive me for intruding into your friendly supportive chit chat but I am wondering if any of you lovely ladies were diagnosed with Bone Mets in the arm?
I was originally diagnosed in 2008 ( 16 LN involved ) and have been suffering with pain in my arm & elbow area for ther last 6 weeks. Waking me at night. I don't have lymphoedema.
Had an Xray through GP , which showed nothing obvious so I have now been referred back to my oncologist ( last had a bone scan in 2008).

I would really appreciate any insight anyone can give me!!

Take care  Bethy xx

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Mowser...so so sorry to hear about your little furbaby being so ill. Its hard when youre feeling ill yourself too isnt it?
Well i had a laugh today. I walked over to Greggs to get a sandwich while in work. It was very windy and the wind was blowing my hair across my face. But i could see pieces of it flying across my face and drifting away in the wind!! It was so strong it was dragging my hair out!
Don't know now whether its worth having the coldcap again on Friday or not. Do i really want to save this straggly mess anyway?
What would you do??
Love bev xxxx
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Hi ladies, hope you are all ok. I have had a lovely day with my daughter putting up the crimbo decs, gone a little OTT this...my house looks like Santa's grotto 🙂 but i don't care, after the year iv had learning of my mets i want a special christmas!!
I agree about Jimmy in the Jungle, i use to think he was funny but thought he went too far with his "banter" i think Jake is sweet (and hunky)
Good luck to ladies having treatments/scans/results this wk
Terri, good luck with the tec's course, i also work in a pharmacy and i know that course is hard going!!
love n hugs Janette x x
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Oh no poor doggie. What a shock for you Mowser. Yes completely understand, you cope and then added stress is really the last straw.
Hope things get better. X
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Hi Becky,

 

I am 55, and my first diagnosis was at 39!  

 

My beautiful Working Cocker Spaniel Archie had a full on epileptic fit this morning-never had one before-my other dog Rosie was barking her head off in the kitchen,and I was waking from a zombie like sleep after Amitriptiline and sleeping tablet last night!!!

 

Frightened the bejezuz out of me, he was writhing around, licking his legs in the air, banging into cupboards and doors, whining, frothing at the mouth, falling down, pooing and weeing everywhere-it upset me sooo much! I am finding that I can only cope with what I am going through-the normal safety net I have in terms of coping mechanism has gone, so the slightest thing tips me over.

 

Off to the hospital, taken bloods, he has calmed down now, so I have something else to focus on today-looking after my baby boy.   A good excuse for a hunker down under the duvet with a hot water bottle, Archie, a cup of tea, and a good film!!

 

Have a great day ladies, starting to get a little stressed that I haven't done anything for Christmas yet!! You all sound really frigging organised. You put me to shame!!

 

MRI on Spine next week to check for progress (in a good way hopefully!!) two big toes blistered, scaly, and potentially infected so have anbtibiotics to take just to make sure I am able to go again with Chemo in a weeks time. last dose of Cape tonight, then one weeks break from it. Hooray! 

 

To all of you waiting for results, having scans or appointments, having a tough time with side effects,  I send my virtual love and best hugs- we are in this together ladies, and together we are stronger!!

 

Mowser xxxxxxx

 

 

 

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Oh Terri, I was early 40's too, it is such a shock isn't it. Be kind to yourself, it's such early days but you will, we all do, find your own way of moving forward.
Ah Helen if you get the chance, some friends, do go and have a loud sing song. 🙂 Do you wanna build a snowman? Tra la la.... I'm looking forward to Paddington next. Not quite the same but it looks good fun.
X
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Belinda, I've seen the shows but no one will come with me 😞 I have the CD on in car but hubby has band it now . Oh I'd love a frozen Elsa dress. I even looked in disney when we were there.but alas only children's boo hoo. Not sure what hubby and son would have thought if I'd gotten one hee hee. Xxxx

It's very worrying that there's been no word from Sheila and Mavis .

Kaye,wow!28 that's fantastic,the peachy devil pills are doing their magic for you,shame it's at expense of your poor H and F. Xxxx
You have your scan on my birthday! I'm hoping I get some good news on Thursday,I'm feeling very anxious at the moment.
Oh,I may watch frozen AGAIN this afternoon!think it's about 20ish times now. Lol I must stop and Let it go,let it go ......
Huge hugs,Helen xxxxx
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Morning everyone, thankyou for your lovely responses, its so nice to talk to people who understand really what your going through.  Im 43 and have two boys 7 and 11 and only pray Im here to watch them grow up but after reading all your posts you have given me hope.....and I thankyou for that.xxx

 

Have a good day everone i'm busy studying, im working and training to become a Pharmacy Technician, i'm still off work at the moment but still carrying on with my course work.....something to take my mind off it all. Going to go back to work after Christmas.

Terrill x

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Wow Kaye I only had markers in my twenties once, that is fantastic news.
My decorations are all up, apart from my front door which I will do this weekend. A friend has many holly bushes and every Christmas I can go and help myself. I was diagnosed the week before Christmas 2003 and spent that in hospital. Had my hip replaced the Christmas Eve so ever since I make sure I get a nice long Christmas.
I have been watching Get me Out...too, was pleased Jimmy left out of the four. Didn't the other team do well the other night with the challenges?
Helen have you ever been to a Frozen sing along showing? It's fun, some of the cinemas round here are showing them in the run up to Christmas. I am hiding, for Father Christmas, an Elsa dress, sadly it doesn't fit me. 🙂
Yes I have been wondering of Sheila and Mavis too.
X
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Morning ladies hope everyone's doing ok,it's quite cold outside today and the wind is blowing here in S Wales.
Helen have to agree with you Jimmy was quite cruel to Jake with his banter.I do wear disposable gloves when cleaning to protect hands but this is the worst side effect for me so nothing seems to make a difference .
Bev good luck with your chemo this week hopefully they will reduce the dose to make it more tolerable for you.My Onc has reduced my dose of Cape twice because of my hands and feet because she thinks it's better to lower the dose rather than make your symptoms so bad that they have to stop it and she's quite happy that this is ok for me as my TM reduced from 194 to 28 after 4 treatments also have my scan on 5 January so hopefully that will show a reduction .
Tracey hope you're doing ok and they do some fab wigs these days.
Take care all
Kaye xxx
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Good morning lovely ladies hope we are all well.
Well just ate my advent chocolate from my Frozen advent calendar ( my friend bought it as she knows I love film lol )

Well no more jimmy in the jungle. His "banter " was very cruel to the young boy so I think to British public showed their displeasure .

Has anybody got any news about Sheila or Mavis as it's been weeks since we heard from them?

Kaye,I put thin disposable gloves on when I'm cleaning as they protect my hands when cleaning.xxxxx

Bev,hoping they will reduce your dose for you this time . Take it easy at work xxxx

Tracy,huge hugs,hope your okay.as bev said wigs look fab these days my sisters looks like her normal hair! Xxxxxx

Huge hugs ladies,Helen xxxxx
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Sorry...meant to add "welcome" to Terri. Take time to read some of the threads. Theres absolutely loads of helpful information. And ask anything that youre concerned about. The lovely ladies here can provide lots of encouragement and support.
We may sound like we're a bunch of mad hatters at times but life still has its humorous side despite what we're going through eh?
Love and hugz.. bev xxx
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Tracy...glad things are on the right road for you. It is a shame about your hair but we have plenty of choices these days with lovely wigs and scarves etc . I have a friend in her 50s that has had alopecia since her teens and when i first met her 15 years ago I thought it was her own hair. It wasn't until about 2 years later that she told me it was a wig! She has the same style in about 3 different lengths so it looks like its growing.
Just glad the rads are sorting things out for you.
Hello to everyone else today. Im off to work today and Thursday....seems ages since i was in last...and then my second chemo friday already!! Then I'll be off again the following week poorly i expect! Clinic tomorrow so it will be interesting to see if they tweek it this time to make it more manageable.
Hope you've all been busy putting your decorations up...health permitting!
Love bev xxx
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Welcome Terri, sorry that you've found yourself here but there's lots of support and advice to be had.

Liz, what a rubbish few days for you. Things will be better for Wednesday then you'll be able to think about Christmas.

Desi, good to see your team listened to you and reacted quickly. Hope you carry on feeling ok.
LD x
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Hi Terri so sorry you are joining us but you will get plenty of support from the lovely ladies on here as we are all in the same boat so to speak ,I have found it has been a lifeline and there's always someone to help and give you advice.
Hope all ladies are ok and hope Helen and Bev are feeling better.
Late posting today as have been busy cleaning before my hands get too sore as they are quite red at the moment,then I had a lovely afternoon at my great nieces' birthday party seeing the children always makes me smile.
Well just off to watch I,m a celebrity.
Take care all
Kaye xxx
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Hi,terri,sorry you are joining us but you will get plenty of support on here. The ladies are wonderful. So we welcome a new friend with open arms.
I was diagnosed with primary and bone mets at same time too nearly 18 months ago.
Please feel free to ask us anything as someone always knows the answer or can give you support. We are also great at hugs too.
Sending you a huge welcome hug,Helen xxxxx
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Hi Terri, just a little posting to let you know I was, like you, diagnosed with bc and bone mets and my first ever treatment was Tamoxifen. This all happened in December 2003. Now twelve years later I have had some good treatments and I'm still here. Hope this may be helpful. X