Hi everyone thanks for your info it is much appreciated. I had my pic line fitted today, much more of an op tban I realised, then I got my wig which I must say was sooo much better than I thought it woukd be. It was nhs sorted out by macmillon. I skyped my sister and after a while I asked what she thought of the wig...she was so surprised she said wow I didn't notice any difference , silly to worry about your hair as it is the least of our worries but I did feel a bit better. So start dreaded chemo thurs.....watch this space. Hi law34 I has issues with my wisdom tooth whilst on denosemub and had to stop whld I had my tooth out. I then got a numb lip and chin which I was told could be a cancer spread so had to have lots of scans before the tooth extraction. Thet said it wasn't cancer but one onc said it still could be a it is sometimes subtle? whilst I had this I heard from a lady in Australia on this forum who said she had a tumour in her mouth which gave her a numb lip and chin like me and chemo had sorted it out and after nine months she was a lot better. It's not that common but there is treatment so don't despair, Its all a roller coaster but give your mum a hug from us hope she gets treatment soon it always feels better when your treatment starts xxx
I am posting on behalf of my mother in law Paula. Paula was first diagnosed in April 2009 with breast cancer involving several nodes. After 6 cycles of FEC, a lumpectomy showed unclaer margins so ended up having a masectomy. This was followed by radiotherapy. It took a long time to come to terms with the diagnosis, and had counselling and hypnotherpay to deal with it. All seemed well and Paula decided to have a reconstruction. Chamapagne was popped into the fridge and off they went to hospital. Excitment was cut short when the surgeon found further breast cancer high up in the armpit area and the operation was abandoned. Taxotere this time for 6 cycles, and a new wig. Hair was just starting to finally grow long enough to go without a wig when rountine scan showed recurrence, and so back on further taxotere x 6. A scan at the end of treatment showed everything to be all as it should be but there issues with pain in the ribcage area. Lots of talk about possible osteoparosis due to all the chemo, but after pushing the consultant, a bone scan showed mets in ribs, and lower on the spine as well as high up by the neck. This thread is what gave us all hope and I have come back often to see how everyone has got on and reported back to Paula! There have been lots of issues for Paula whilst on cap and has had to take several breaks. It seems to affect her magnesium levels, and has had to go in weekly for some magnesium via IV. Also problems with fluctuating temperatures, at one stage she was put in an isolation ward as suspected TB (still awaiting results). It was getting to the stage where she was very poorly so decision was made to stop the cap, as was having problems with vision, headaches, and weakness on one side, along with loss of speech. Updated scans have shown spots of breast cancer in liver, bowel, lungs and now meninges. Oncologist had given weeks, but due to excellent response to steroids, has suggested a new drug trail called cabazitaxel. Does anyone know of anybody else trying this or had a similar prognosis and been able to turn it around? We are all on such a roller coaster... big hugs to all, youare all so amazing and compassionate. I wish Paula would log on but she prefers to leave it to me to read out posts to her that I think she would be interested in x
Hi Waffles, sorry to hear you have progression, good luck with the cape, I have no experience of it so can't really advice you but will be keeping my fingers crossed for you.
Hugs Janette xxxx
Hi Edwina - everyone's different but my hair has started to fall out (or just thinned this time) each time on day 15. I have a friend whose hair began to fall out on day 14. I hope this gives you a rough idea of when to expect it.
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 !
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
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.
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
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
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
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
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
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
Hi imac, firstly apologies for not getting back sooner, I had problems finding the thread
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
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
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
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
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
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
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
"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.
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!
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 http://laurasnyderupdates.blogspot.co.uk
Just keep on keeping on people!
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.
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
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.
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
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.
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
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
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
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!
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