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Bone mets - please join in

Law36
Member

Re: Bone mets - please join in

Hi there .... I read every day this forum and it really keeps me positive about my mum ... So I have learnt a lot that I can take to her and explain .... My mums had gone to her bones secondary 2 years ago and last month was found in her lung ... Denosumab stopped so they could look into it further... She has had a swelling in her mouth now for 10 weeks they have being saying dire effect from bone strengthens today we have had to wait for biopsy that the swelling in her mouth is now cancer ;-( I'm besides myself with worry as she started cape last week .... Has anybody else heard of this and or what treatment has been offered .... Thankyou law
edwina64
Member

Re: Bone mets - please join in

Hi everyone....stresshead I was on cape for 4 cycles but onc said it was not working so having a pic line fitted tomorrow  and starting weekly taxol on thursday...have to have it Christmas eve and new years eve great !My first intravenous chemo so quite scared specially as I have a house full over christmas, but they are family

 So have all vowed to help. Tomorrow  I have to get up at 6.30 am to get ready and get to hosp at 8am for pic line then onc appointment 10am then wig fitting at 11.30 all go. Then back thurs for chemo , anyone else on weekly taxol, how are you coping shoukd I expect to even more tired than on cape? Hey ho no point in worrying got Christmas to worry about. Best wishes to everyone..anyone out there got good news? Its always great to hear xx oh wanted to ask how long before your hair falls out got an appointment with a hairdresser next week case my nhs wig is not great but she said she would match my style and colour but if my hair is already gone after a week she won't be able to do that !

 

stresshead
Member

Re: Bone mets - please join in

Hi Edwina, sorry to hear you are having a rough time. You sound like me..nothing works for very long. Have i misundertood you or are you having cape alongside weekly taxol. I started with docetaxol and cape and was (wrongly) told i was in remission. I beged my onc to let me stay on caoe but he refused. My skin mets took hols with a vengeance. Eribulin didnt work and now i'm on weekly taxol but dont think this is working. I asked my Onc about having avastin with it and he said he would apply for it and keep it in reserve. I see him on Thirsday so could ask him again about cape if indeed it is used with taxol. Thanks for yor help.x

Downbutnotout
Member

Re: Bone mets - please join in

Hi Edwina

 

I only had 9 days of Cape and had to stop because it just incapacitated me so much I could hardly get out of bed, walk, sit upright, and it made me so sick. I thought I'd start to improve 2 or 3 days after stopping the tablets but I was still very ill for about another 4 weeks, even the vomiting continued for about 3 weeks after. From my experience, it does take a long time to shake off the effects, so don't be worrying that it's the cancer, but I understand you feeling like that as I thought it until I eventually recovered.

 

I hope you feel better soon and best of luck with the next treatment.

X

Stillhere
Member

Re: Bone mets - please join in

Hi Edwina, I can't tell you whether it is Cape or your mets causing your symptoms, but I have been off Cape for a good 6 weeks and only now are my feet starting to mend and I'm feeling less tired. I still don't feel back to normal and wonder if you ever do since treatment follows one after another. I'm on a hormone therapy now.

 

I hope that everyone has good news with their scans. Xx

edwina64
Member

Re: Bone mets - please join in

Hi everyone sorry to hear about your scan mariose, I feel a bit the same at the moment the e/e combo didn't  work for me but took 9mths to decide, then went on cape for 4 cycles and told not working well enough so starting intravenous chemo taxol weekly. I wondered if anyone could tell me if this is usuall but stopped taking cape two weeks ago..one week was my week off and no new tablets this week ad waiting for pic line to be fitted for new chemo, but feel awful this week, so tired and aching not able to do much and still have sore feet though a bit better and now ulcers and sore mouth. I am wondering if this could be side effects of cape even though I havent taken it for 2 weeks ,  or that my cancer has got so much worse. My onc said worried about my liver nets (first time I knew I had liver mets !!) Could this be causing the fatigue ? Sorry to rant on but it's  scary to think cancer has advanced so quick. Best wishes to everyone hope we all get good news for christmas xx

granny-anne1949
Member

Re: Bone mets - please join in

Hi ladies, I haven't posted for a couple of weeks, been on Facebook page instead. I notice a few of you are on gabapentin, I am on this also for facial nerve pain - 3 x 600mg per day. I have been on them for around 5/6 weeks and they do take 3/4 weeks to get into your system and start working properly, they're not like a one-off painkiller. They have certainly helped with my nerve pain, hope this is helpful, love to all, Anne x

Waffles
Member

Re: Bone mets - please join in

Thanks Janette, you are very kind. I'm sorry to hear you are struggling too. I hope you have good news soon x
rosie53
Member

Re: Bone mets - please join in

Marirose and Waffles, sorry to hear your struggling with this horrible disease at the moment. We all understand your worries and fears,  I too am struggling just now, not sure my new treatment is working as I am getting more than usual pain.

Take care ladies Hugs Janette xxxx 

Waffles
Member

Re: Bone mets - please join in

Hi Marirose,
I understand your shock entirely. My pelvic and spinal mets were diagnosed after a bone scan done in mid June this year. I recently saw the latest scan done mid November after 4 months of unsuccessful treatment with exemestane. Most of the mets had got substantially bigger and looked black instead of grey as they had appeared in the first scan. I was horrified. I didn't expect things to move so fast. I've nearly finished a weeks radiotherapy and will be starting cape shortly. I hope these slow it down. My thoughts and best wishes are with you too. x
Marirose
Member

Re: Bone mets - please join in

Hi everyone
Feel in a state of shock I had my bone scan results yesterday 1st one since dx 2yr ago when met on sacrum was dx. October CT scan showed chest wall tumour had increased from 16mm to 27mm so e/e combo was stopped and now starting second cycle of cape. The scan shows 5 more lesions in pelvis and both legs. I am feeling much better since starting cape and free of pain apart from my shoulder which does not show anything wrong on scan. I do have difficulty walking but that's my MS in the muscles on the right side.
Just needed to get it off my chest sorry to burden you with it.

I do hope you are all ok xxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Lez

Now you've got me thinking! You'll have to let me know what your previous login name was and then it might ring some bells. However, as you've said, I've had lots of treatments so I'm afraid chemo brain is always playing me up!

I understand that Tamoxifen can cause blood clots, as your onc has said but AIs don't? Please someone correct me if I'm wrong. Therefore you could ask to have an AI and, if you are not post menopausal, to also have zoladex injections which put you in a post menopausal state? I haven't read back on the thread for a while so not sure what other treatment you have had but I would ask your onc about this. Usually we all seem to be on some form of hormone or HER2 therapy if our BC has those receptors. Otherwise chemo is an option as and when hormonals stop working, I've had Capecitabine which was quite doable once I adjusted to it, and also docetaxel most recently as I now need Herceptin and pertuzamab since my receptor status changed. Hope you, and any othe the other bone mets ladies in pain, get some relief soon.

Take care all

Nicky x

lezhop
Member

Re: Bone mets - please join in

Hi all, also, forgot to say once again how brave & wonderful you are all on here.

marierose, thank you for your reply, poor you! all this & ms too, what a nightmare! I hope the pains have improved. You have so much to contend with x

edwina64 you mentioned the breast care nurse, but it seems the only people I get to see now are the doc, onc & palliative care nurse, hope you're backache has improved x

Just another quick question...I am wondering why the only treatment I'm on at the moment is the denosumab ? I haven't been offered anything else (I was on tamoxifen until 3 weeks ago, but it was suggested I stop because they thought it could be causing my blood clots). nicky08, you may be able to answer this as you've had so much treatment, bless you. I remember chatting to you years ago & its great to see you back x

Keep up the good work in attacking this monster disease girls! Take care & love & hugs to all xxx

lezhop
Member

Re: Bone mets - please join in

Hi imac, firstly apologies for not getting back sooner, I had problems finding the threadMan Frustrated

I was also told there woud be no side effects, but I cant be sure when the spread began, so it may have started quite a while ago. I've tried so many differerent pain killers & the best I've found were gabapentin & celecoxib, although I can no longer take celecoxib, due to a bad stomach bleed back in March. It is hard to control I agree & I still cant be sure if its the densumab or gabapentin thats causing side effects. Unfortunately, I cant cope without either, but I do find paracetemol every 4 hours helpful. I sincerely hope there hasn't been a missed diagnosis in your case. I'm pretty sure it doesnt happen that often (thankfully). I agree, Oncs & docs can be quite blaze & I'm pretty sure it would be totally different if it was the case of one of their loved ones. Easy to say but try not to spend too much worrying, as this causes tension & can result in an i ncrease in pain, take care, Lez xx

rosie53
Member

Re: Bone mets - please join in

Hi Edwina, yes I have been on denosumab since around May last year. Hope you are feeling ok today, try to stay strong  (Hahaha says me the world's worst stress head!) I'm going to try my best not to worry whether these letrozole are working and going to look forward to Christmas 🎄🎅 and spending time with my family and friends I love Christmas, me and my daughter are going to put the Christmas tree up next week I can't wait!!!

Hello to all you met ladies hope you are all keeping well Hugs Janette xxxx 

edwina64
Member

Re: Bone mets - please join in

Hi Jannette  I was given gabazentin for the nerve pain I have with my wisdom tooth extraction, I took one at night and it did help me sleep, maybe just try a lower dose.  you can get pain from hormone treatment and my breast nurse told me it takes AT LEAST 6 weeks to kick in so hang on in there. Do you have bone strengthening inj ? They actually stopped my pain had to stop my inj whilst I had dental treatment and I really missed them.  Hope all goes well xx

rosie53
Member

Re: Bone mets - please join in

Hi Edwina,  sorry to hear your struggling with treatments at the moment. Try not to be disheartened as your onc has said there are a lot of other treatments out there to try, please don't apologise for having a rant that's what we are here for!! I to am struggling at the moment,  I was changed to letrozole from tamoxifen almost 5 weeks ago and so far I haven't noticed any improvement with the pain in my hip / leg in fact it's getting worse if anything, this is really worrying me,  my onc told me it would probably take around 6 weeks to start working and I'm almost at 6 weeks now. I saw a pain doctor a few weeks ago and she gave me gabapentin 300mg and I tried them for the first time last night as it was particularly bad but I felt awful this morning just felt like a zombie so won't be taking any more of those!

Take care ladies Hugs Janette xxxx 

edwina64
Member

Re: Bone mets - please join in

Oh Glo just what  I needed a bit of encouragement! I am feeling the fight has been knocked out of me but may feel better once new treatment hax started. Tried on my husbands beanie hat it looked awful but made us both laugh through the tears, it was black so maybe better in a different coulor!  Thank you so much for your post xxxx

Glo
Member

Re: Bone mets - please join in

Hi Edwina,
Sorry you are having to change treatments, it's hard to cope with. . I too had letrozole (for 4 years for lung mets from the start), then Sept '14 it stopped working, and added in liver mets, onto e/e till March '15 which didn't work, then cape which wrecked my stomach and didn't work. May '15 added in bone mets! May I did 12 weeks of weekly paclitaxel. It reduced all the mets and since it finished in Sept I have been on tamoxifen and had further slight reduction. There is no reason to think the paclitaxel will not work! I did the cold cap and keep my hair. It did thin and I got two bald patches, but I could cover them and I am still losing a bit but I have/had very thick hair so it's not been a problem! Eyelashes and eyebrows lasted all thru chemo and went about a month after it finished but came back very quickly! I have quite extensive mets, including chest wall and have just come out of hospital after a pleurodesis to stop pleural effusion returning, and my Onc tells me there are still plenty of other treatments.
Good luck with your treatment!
Glo xx

edwina64
Member

Re: Bone mets - please join in

Hi everyone....well went to see onc today to get scan results....not good she said the cape was not working and she was worried about my liver mets which had grown much larger. This was the first time I had been told I has liver mets as well as bone and lung so feel very down . Up to now I had letrozole for a year and since then e/e for 9 months which slowed things down a bit and 3 cycles and 1 week on cape. She recommended intravenous chemo paclitaxel weekly.  I said what are the chances of this treatment working and she shook her head slightly and hopefully it may work and that my cancer was hormone based so she had some other options if this treatment fails.  I wonder if anyone here has had this, I feel so downhearted that my first chemo cape failed does that mean I have less chance of any chemo working?  My onc talked a bit about end of life care which made me feel even worse!  I am going to loose my hair is it worth going for a cold cap?  My onc said she would get my breast nurse to call but not sure what to say just hoping something will work. Sorry for the rant so scared and family all look devestated x

Chocolates
Member

Re: Bone mets - please join in

Hi to all the new ladies. Best place to be with everyone willing to help and support.  Can't help with hormone status ladies but I do know that it can take several treatments before you find the one that works for you. No one is ever the same so best thing is to ask other ladies with similar status what treatments they've had so you can go to your onc with suggestions.

with regard to oncs we have the good and the bad. You're always entitled to a second opinion - don't be afraid to use it. It's your choice. 

 

Im so busy at work atm that i barely get a chance to read the thread let alone reply. Hope everyone is doing as well as they can. 

 

Jolly cold here today with the wind chill - yes I'm a soft southerner and the temp change is not good. Bones a bit more achy too today. Anyone else get more bone pains with the temp drop?

 

huge hugs ladies xxxx

Waffles
Member

Re: Bone mets - please join in

I've been a bit down hearted this week as was told that I had totally failed to respond to exemestane which was my first treatment since my secondary bone diagnosis. I will be starting cape in the next couple of weeks after radiotheraphy so your post is just what I need to read just now. Best wishes.x
Elily
Member

Re: Bone mets - please join in

"Has anyone stopped taking Letrozole/Tamxifen and started Chemo? Success?"

I have taken Letrozole, Tamoxifen and Exemestane - none of which have worked for me. I have then been switched to Capecitabine (oral) which worked for 18 months with relatively few side effects and am now on an intravenous chemo, Epirubicin, which, apart from hair loss and needing blood transfusions for low haemoglobin, hasn't been too difficult (still managing to work full time). Whether it works or not is yet to be seen.

I have bone mets but haven't had any significant pain since my initial diagnosis of breast cancer and resultant chemo.

Waffles
Member

Re: Bone mets - please join in

Hi CMcCallum,
I was only diagnosed with secondaries in the summer and can't help with any of your questions but I do have much the same concerns for myself as you have for your mum. I do agree that it is inexcusable that a doctor should see a patient without reading over the notes properly. I would have been very upset about that too. Best wishes x
Waffles
Member

Re: Bone mets - please join in

Thanks Vix,
Probably like yourself I had gotten to the stage where I rarely thought about cancer. Then boom, - it was back. I think once I get a treatment that actually works I'll feel a bit more optimistic and relaxed but the uncertainty is very difficult to cope with. At least I've plucked ip the courage to finallly join this forum.
cmccallum05
Member

Re: Bone mets - please join in

Hi everyone,

 

Posted in a couple threads, but noticed they are inactive for a while now. Apologies for the length and any double posts!

 

Joining this thread not as someone with cancer, just a daughter who needs some hope. My mom was diagnosed 3 years ago with Breast Cancer with bone mets. An incurable disease. It has been a rollercoaster of a ride, to say the least. My mom has taken Letrozole for 3 successful years, while also receiving radiation for bone pain. Recently she was switched to Tamoxifen after more bone mets caused her pain. He onc who gave her the radiation said she can have bone mets, but if they are not causing her pain, there is no need to treat. Now that her pain started again, she was taken off Letrozole as it stopped working they believe.

 

She now has pain in her right hip, but Xrays don't see anything significant that would cause it. The morphine she is on does not touch the pain, but Advil (anti-inflamatory) does. She doesn't feel it's the cancer, the docs are unsure. She is being sent for CT scan, bone scan, and MRI. More waiting. We met with a resident doc (as her normal doctor has been away for 3 months and didn't mention she would be away) and the resident said if Tamfoxien doesnt work then she will be switched to a Chemo drug "which is not easy to handle." The bedside manner of the resident was less than ideal (putting it nicely). She came into the room not really knowing about my mom's case. When originally diagnosed, they said there was no point in removing the breasts as it has spread. The resident said "why didn't you have surgery"? and kept asking what we planned on doing. I was so confused and scared. She made it sound like life was over for my mom. Maybe Im too emotional to think clearly.

 

So my questions are:

 

1. Has anyone stopped taking Letrozole/Tamxifen and started Chemo? Success?

2. Are there options after Chemo?

3. Is it normal to see several different docs that don't know the patient?

4. Do you take pain killers for the pain? How much?

5. How do you all stay so strong? My mother is a trooper, me an emotional mess!

VixViking
Member

Re: Bone mets - please join in

Thanks Pleasant1 🙂 Yes I am on chat girls...I have learned so much from there already. Xxx

Hi waffles, sorry to read about your progression. We have a similar dx timescale. My primary was in 2006 er/pr+ and then after 4 months of symptoms/investigation the shock of recurrence in lymph node and bone mets dx June this year after really feeling I had moved on. I originally had mastectomy but no chemo and no Tamoxifen and now on zoladex, Anastrozole and denosumab, currently waiting and hoping it works. I hope your new plan keeps it at bay. It's a horrible feeling to be wondering what the future holds with this. Love Vicky Xxx
Pleasant1
Member

Re: Bone mets - please join in

Hi Vix – really feel for you, and i'm guessing you're on Chat Girls. x

Pleasant1
Member

Re: Bone mets - please join in

As indeed we all do Silverlining, and believe you me, I wish there was one, particularly as I have young children.

Perhaps you'd like to also join Chat Girls, a closed group on facebook, which is welcoming, supportive and informative. The group's linked to the recently launched SBC charity Second Hope. If you haven't already checked it out online it's http://www.secondhope.co.uk

There's lots of women here who'll gladly introduce anyone with SBC to Chat Girls; JulieD, Mel, Ethel perhaps?

It's really tough hearing the 'incurable' line. I'm totally hating it all but as I have no choice in the matter I can only struggle on as best I'm able. Everything depends on how the drugs we're given work for us and as we're all individuals with various types of SBC and other health issues I guess it's mostly up to fate.

Another good source for cancer research and treatment is http://breastcancernow.org/breast-cancer-research/our-research-projects

And this blog's a good place to start regarding how complex what we're up against is laurasnyderupdates.blogspot.co.uk

 

 

silverlining
Member

Re: Bone mets - please join in

This is my first post. I was diagnosed with secondary breast cancer in May. I have mets in my pelvis. I feel so uncertain wrt my future.

rosie53
Member

Re: Bone mets - please join in

Hi Waffles, to answer your question about biopsy, last year when I got my mets dx they did a biopsy to check I was still ER positive like my primary, they did it on my spine I had a local anaesthetic and it took about 40 mins and I didn't feel a thing just a bit of pain once the anaesthetic wore off.

Marirose,  that's interesting to read about one of the s/e of denosumab is sciatica! It was around a year after having it that the sciatica pain has come back I also get a lot of cramp in that leg too.

Hugs Janette xxxx 

Marirose
Member

Re: Bone mets - please join in

Welcome Waffles to our thread but sorry you need to be here.
Do any of you take Denosumab one of the se is it can cause sciatica I had it 18 month ago after I had been on Denosumab a year or so. At the time I was also on exemestane and Everolimus but before that Letrozole which didn't work for me. I took paracetamol and Codeine 4 times a day.
Best of luck with it x
Waffles
Member

Re: Bone mets - please join in

Thankyou Janette and Pleasant for you replies. It is so good to speak to people who understand exactly what you are going through.
In answer to your question Pleasant - I never thought to ask about testing my mets as I only have them in my bone and I didn't think it was that easy to do a biopsy. I will ask though.
Thanks again ladies for making me feel so welcome and I have my fingers crossed that your treatments go well. x
Pleasant1
Member

Re: Bone mets - please join in

Hello Waffles

Diagnosed just before you - although symptoms had been niggling away for six months beforehand - Letrozole didn't work for me. I've had one chemo but I'm having to move to weekly chemo now. Have you had your receptor status checked? Mine changed between primary and secondary, which is probably why Letrozole didn't work.

x

rosie53
Member

Re: Bone mets - please join in

Hi Waffles, sorry you have had to join us but welcome, my primary was in Feb 2007 ER+ low grade had lumpectomy and 4 wks of radio,  was dx with bone mets March last year and like you it started with sciatica pain hip/ leg and I also had a limp, my mets are in my hips ribs and spine and was put on tamoxifen last year but my onc thinks I am no longer responding to that as the sciatica pain has come back and my markers are slowly creeping up so I am now on letrozole  (4 wks ago) and as yet the sciatica pain is still there but otherwise I feel fine, so I am just praying my best Christmas present this year is a great response to letrozole 😊 Fortunately  there are lots of treatments out there for us its just finding the right one for you.

Hope this has helped you a little, there are lots of lovely ladies with a mountain of help, support and advice on here so you just ask away if you have any worries.

Hugs Janette xxxx 

Waffles
Member

Re: Bone mets - please join in

Hi all,

This is my first post but I have spent a lot of time reading the forum  since my secondary diagnosis in July of this year and found it immensely helpful. I was originally diagnosed with Er +and Pr + IBC in 2006 and treated with chemo and mastectomy then Tamoxifen for 5 years and then Letrozole. I stayed symptom free until I developed sciatica and a bad limp this Spring while on Letrozole.I was diagnosed with bone mets in my spine, pelvis and sacro-iliac joints. I was treated with Exemestane and Zometa. Initially pain seemed to be not to bad but in the last 2 months I had more pain although the limp has gone. I  had another bone scan and found out yesterday that the treatment has failed and that there is significant progression in the existing  met sites although, not any other bone mets as far as I know. I will  get a CT scan soon to check elsewhere.

I will have a week of radiotherapy next week and then am due to start capcetibine after that.

I feel very downtrodden and fearful for the future. Has anyone else failed with their first anti hormone treatment so quickly and gone on to get good results with other treatments?

Sorry for going on a bit. 

rosie53
Member

Re: Bone mets - please join in

Thanks Edwina/ Lynne, suppose it is still early days yet and i have to be patient! It's just so scary isn't it the not knowing, apart from the leg/ hip pain I feel fine, can't wait for January  (also will be dreading it) to see what my TMs and scan results will be.

Hugs Janette xxxx 

Stillhere
Member

Re: Bone mets - please join in

Hi Edwina, to reply to your question about Capecitabine and breathlessness, I don't have lung mets but I felt increasingly breathless on Cape, even walking upstairs sometimes made me feel weak and I was permanently tired. Cape was an effective chemo for me, was on it 2 1/2 years but I notice that I have gradually started having more energy now that I'm on Faslodex.

I just wanted to share my experiences in case it is the Cape and not your lung mets x

Lynnq
Member

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Hello Janette.

 

regarding letrozole I can tell you my experience.  I started taking it 30 Nov 2012.  I didn't know it at the time but my TMs were 412.

 

  I had secondaries diagnosed in bones, upper thoracic area, pelvis and skull. Also some infiltration in peritoneal area and a skin lesion which they removed from about 2 inches under my breast also had BC cells. They also discovered primaries in my other breast I was devestated as we all are.  Asked for the other breast to be removed - they weren't keen.

 

12 weeks later I had another blood test as I was starting Zometa.......this  had been delayed because ONC and pharmacy were arguing about whether I should have denosumab.....it wasn't routinely prescribed at the time.

 

The BCN rang me a couple of days later to tell me that there had been a "huge" drop in my TMs...from the initial 412 to 105.   So the Letrozole had obviously been working hard during that 12 week period......and it has continued to do so.  My TMs continued to fall over the next 3 years and now hover around the 35 to 40 mark. 

 

They were also much more willing to remove my other breast - and I had it removed along with a temporary implant and the rest of the other breast.  Did not want reconstruction.

 

i was ER+8/8 

 

my onc tells me that in my case TMs are a good indication......I have had scans as well, although not routinely but   -   they can no longer see any cancer in my thoracic area (in fact the radiologist on the report for a recent MRI scan cast doubt on whether I had ever had bone mets there....Onc says I did because TMs were high)  The peritoneal area appears to be resolved and I have had no more skin lesions.

 

so in my case Letrozole is working well.  It is the only treatment that i have had, along with Zometa and Adcal.....

 

i do have side effects but not as bad as  they were and they come and go. I take naproxen and paracetamol, but not on a daily basis anymore.    Onc told me that it can continue to work for 2/3 years but here I am just starting my 4th year on it.  I 

 

regarding the leg pain I sometimes have a sore hip which also affects my leg....had X ray and scan nothing untoward showing there, saw physio for that and it's not so bad now.  Also had recent ct scan which shows my  organs are clear.

 

next time I see Onc in January  I am going to ask him about 'remission'

 

really hope letrozole works as well for everyone else

 

xx

 

 

edwina64
Member

Re: Bone mets - please join in

Hi Jannette  when I first had letrozole my breast nurse told me it takes at least 6 weeks to kick in. I had it for a year and it worked great....since then have had a year of uncertainty on cape now results of scan next tuesday hope its working as we know scan anxiety! 

rosie53
Member

Re: Bone mets - please join in

Morning ladies, its been pretty quiet on here this week, hope you are all keeping well.

Nicky, I have just been reading through the past posts and you mentioned about the pain you got down your leg which led to the dx of progression to your liver, is that a symptom of liver mets?? As you may have read in my previous posts I have been changed from tamoxifen to letrozole 4 week ago but the leg pain is still bothering me it's like a sciatica pain. I don't see my onc until January now.

Also does anyone know how long it takes for letrazole to start working?? 

Hugs Janette xxxx 

ginette65
Member

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hi Edwina

i have similar problems as you.is it possible you have fluid on your lungs?

i had to have my lung drained 5 months after being diagnosed with lung mets.i also was on capecitibine.

it didnt work for me whereas exemestane is,although am suffering with side effects

ginette

Law36
Member

Re: Bone mets - please join in

Thankyou for the advice ... It is also nice hearing someone has gone through : going through the same thing ... u feel like your the only one ..... Thankyou again for your reply xxxxx
edwina64
Member

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Hi everyone not sure I shoild be asking b this question here or on the treatment page but here goes. I have been on cape for three cycles and just started the fourth. I have developed a lot of breathlessness  especially after walking up stairs.  before I started cape my onc said my mets had developed in my lungs about six months ago and the e/e treatment I had before cape wasn't working . What  I am asking is has anyone had breathlessness with cape or is my lung secondaries making me breathlessness!  bit scared and not seeinf  my onc for three weeks. 

Rose_Red
Member

Re: Bone mets - please join in

Ginette thanks for replying. I am on a real downer just now and that is not like me. I have been unwell since 24 October and just don't seem to be able to pick myself up. I have breast, spine and liver mets, first diagnosed November 2011. I have had 4 types of chemotherapy and started Exemesatne on 20 October.  Until last month I have tolerated everything pretty well but now !!!!!!!! The only good news is that after a thorough examination by the GP she declares that apart from the dry cough, the inner ear infection, the lack of appetite and the tummy problems I am very well and the cancer is stable. I just wish I felt better.

 

 

Carolyn52
Member

Re: Bone mets - please join in

Thought for the day

 

When I was at the hospital this week, there was a very well off lady having all her BC treatment as a Private Patient and I thought to myself ..........Cancer doesnt choose it just hits us unlucky ones whether posh or pauper.  

 

What is Wealth if you dont have your Health. 

 

carolyn xxxxxx

Carolyn52
Member

Re: Bone mets - please join in

Hiya ladies out there. Although I dont always post on this every day, I do read the links and replies and can honestly say that Im so impressed with all the knowledge you have all gained and the strength you fight with it all. 

 

Im still waiting for bone scan results next week but in the meantime have had a one off blast of rads yesterday on the hip and they said it would flare for a few days which is a good sign apparently. Im just taking Letrozole and Calcium tablets at the moment. Paracetamal and a hot water bottle at night are my best friend to get some sleep. My journey into the unknown is just beginning ........

 

Carolyn xxxxxxxxxxxxx 

belinda
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Re: Bone mets - please join in

Why thank you Chocs... 😕 The little scamps are looking resplendent in those Santa Helper outfits. I have sent them over to the Cyber Cafe to help set up the Grotto. 

Chocolates
Member

Re: Bone mets - please join in

Welcome to all the newbie's. It's so reassuring to read all the messages of support and of course our belinda's inspirational story. Nicky, as ever, always knows how we feel and writes it so anyone can understand. 

 

Sorry im so quiet - it's all so busy at work and my day off is spent catching up with the dreaded house work and chores. 

 

I had a lovely half term and managed to fill it with catching up with friends. Flu jab made me unwell for 24hrs but then fine and then I was back to work and needed a rest!! Plus of course the quads!! I'm sending them to aunty Belinda for a while!!!

 

huge hugs everyone

 

hxxx

VixViking
Member

Re: Bone mets - please join in

Janette no I haven't seen that but it sounds exactly how I'm feeling, but yes I'm a tough cookie and pick myself up, plaster the smile on, and attempt to function as best I can. XXX

Belinda that is amazing and gives us hope. I'm so glad to hear you have kept well for so long and I hope you manage to find more treatments to suit you. I'm 40 with two little ones so I need to believe I can at least see them through their childhoods. XXX

Much love ladies, Vicky xxx