Dawn, that is lovely news and thank you for sharing, we all need a bit of a pick up after the last few weeks so it is doubly welcome to hear this 🙂 What a busy granny you'll be, or are you a nanny? I'm sure your daughter will appreciate the extra pair of hands as well 😉
Congratulations Dawn, that's lovely. Christmas at your place is going to be magical with all the excited tots. Being, a granny is great - all the pleaseure and none of the pain (except when you're left to babysit, cause that can be fraught, I've found).
That's lovely news. These things mean so much to us. I have two little grandsons. I didn't think my daughter wanted children but out of the blue she told me she was pregnant and it was just after that that I was diagnosed with secondaries. She and her partner presented me with a beautiful grandson. They married 18 months later and she fell pregnant with a honeymoon baby. So I now have Luke who will be 3 next month and Josh who is 8 months. I'm sure they keep me positive in my fight against BC and I adore all the time I can spend with them - and my daughter too of course as she's still on mat leave. Congrats to you and your family.
I'm still feeling OK after my 2nd TAX yesterday except that I'm up at this time of the morning. Better than last time though as I was up all night after it.
Dawn how wonderful, you must be thrilled to bits and so lovely a girl and a boy. I remember your first grandchild being born 2 years ago and as you say to us secondary ladies it is all the more special. I have 2 little grandaughters who I love to pieces and they bring me so much joy.
Thank you for sharing your happy news
I just want to share my good news here - 'cos this thread is where I mostly post :). My daughter & sil brought us such joy 2 yrs ago when we had our first grandchild. I have probably hinted already but poor lass got off to a very difficult start this time that I was almost afraid to hope .Not one, but two this time - a boy and a girl. Sadly she lost the identical one to the boy but that could have been a heavy load for her to carry 'cos she isn't that big LOL. She has already been warned that they are both doing well and for those of you that know anything about pregnancy the girl is in the 97 percentile. As lucas was almost 10lbs I hate to think what size the twins will be! But I am just so thrilled. When we live with secondaries we feel we are going to miss out on so much and I have to say so many things I thought I would miss out on - have come to pass :).
Thanks Tillycat, that was well put. I also belueve from something I read somewhere that the markers are compared with averages within communities so if you had markers done in Scotland and Wales you'd probably get a different reading for each. The main thing does seem to be the trend.Glad yours are trending the right way Val! xx
I was told that 'normal' levels for CA125 was the same as CA15-3, which is about 35 or under.
I believe that there are 2 reasons that we are told not to get too hung up on the actual number-
Firstly the number can very a lot depending on where you are tested. I know this is true because I had my CA15-3 markers done at the Marsden and they were 308. A week later I was at another clinic and they did the same markers and it was only 185. I got very excited but unfortunately it was just that the machines had been calibrated differently.
It is important to watch trends and always go to the same place for the test
Secondly cancer cells can vary in the amount of markers they produce/release. It is possible for someone to have a lowish marker number but have quite a big tumour load, because each individual cell is only releasing a few markers. If the tumour grows then the number of cells increases then and the tumour markers will go up (eg from 80 to 100) so increasing markers suggests growth.
On the other hand someone else might have cancer cells which each release very large numbers of markers, again if the tumour grows the markers will go up (maybe from 400 to 700 this time)
This simply suggests an increase in the tumour, not that it is 7 times bigger than it was for the person who has a marker count of 100.
The situation becomes even more complex in that cancer cells can change in the amount of markers they release so although the cells in the early tumour may start off by releasing small amounts they can can divide into cells which produce more (or less) markers - a doubling of the markers doesn't necessarily mean a doubling in size of the tumour.
So overall it's a matter of watching to see if they go up or down to see what is happening. The 'normal ' level is lovely when you hit it, because it suggests that there are no active cancer cells left. If it goes above that number it simply means that there are probably cancer cells present but unless you know how much each cell is releasing it can't really tell you how big the tumour load is. That's why oncs look at markers as an indicator of whether a treatment is working but like scans best 🙂
Sorry for rambling, hope this helps
Thanks Liz and Lesley for your posts. I am pleased that the trend is downwards yet I can never get a satisfactory answer when I have asked the nurses or doctors. I fully understand that it gives an indication if chemo is working.
I remember the first time I was ever on Capecitabine that the markers halved after the very first round of chemo. I found really helpful as I was on a much higher dose then and I was feeling crap and at least I knew the chemo was doing its job. My feet got even worse and eventually when it felt like I was walking on cut glass and the amount was reduced. Now I am on the lower dose and am finding it easier than in previous years.
Yet I feel that there should be more information SOMEWHERE but they either do not know themselves or don't want to tell us. But why? Why is it so secret? Or is it just so complicated? I know they do not want us to JUST go with the markers alone but I would like to know more....but no-one seems to be able to tell me. I find this a bit frustrating. But thanks for replying. Love Val
PS Liz...I did enjoy our catch-up and it was good to voice all those problems that have been thrown at us recently. It is always sad when people we love go downhill so quickly. We miss them. It was good to talk. X
It all sounds like very good news to me! I'm afraid tumour markers are the bane and worry of my life. I don't know about the two you have had taken, but at its lowest whilst on Arimidex, my CA15-3 was 20. Normal is apparently 35 and under. It rose to a high of 1,900 when my liver mets were diagnosed, then went down to 800 on Docetaxel and my oncologist was thrilled, although I still thought it was a huge figure!
I'm not sure what the level is as of today but I do know that six weeks ago (after I'd been failing miserably on Letrozole for six weeks) it had shot up to 3,594 (eek) I was terrified but the onc told me not to fixate too much on the actual number but to look at the trend - that didn't actually make me feel much better to be honest.
I'm now on Xeloda and not sure precisely what the marker is doing but will find out in ten days time - hoping it's dropped a little -preferably a lot. I had a scan two weeks ago which I think would have thrown up any major problems which it doesn't seem to have done. It seems that the actual number isn't that important but the trend of rising and falling is what matters, and for yours to have halved, that sounds excellent to me. I've never been able to find anything very useful on the internet either, sorry I can't be of more help.
Let us know if you find out anything worth knowing!
That sounds like great news about your tumour markers! Afraid I don't know anything about them as I've never had them done (to my knowledge!) but a halving of the number sounds good to me.
Thanks a lot for the chat last night.
I need your help. Do any of you know where I can find out more about tumour markers?
I had good news today that my tumour markers have halved since January which is wonderful news.
But when I look up about information about markers all I can find is details about what the markers mean. What I want to look up is a table or something to see what "normal" and "high" or very high" is. The markers are CEA and Ca125. I have been having the blood tests done over many years. Yet I cannot actually find anything on the web that shows a chart or similar.
I know my news today is a good sign. They have gone from 336.7 down to 178.2 and the Ca125 from 3349 down to 1647. I think the higher number which I had done in January before I started chemo are much higher than normal and the drop in them yesterday is great. But I want to find out more. Thanks, Val
Just to say that I was om exemastine for a year to treat bone mets. As it stopped working I am presently on IV chemo and then will go onto tamoxifen. My first hormone treatment was Letrasole.
Thanks Pam that's helpful. Good to know that if the Exemestane doesn't do the job, I can still try Tamoxifen.
In future I will be routinely asking for radiologists reports. Seems that these doctors cannot always be relied upon to read things properly - and that can have serious consequences.
Lemongrove I think your questions are very reasonable and I think it is very helpful to always ask for a copy of the radiologists report...it helped me this week. Prof walked in with copy of radiology report from mons MRI. Said markers were down (a little!) but was confounded by report of MRI which showed progression. When I read report I pointed out thet some of the report was referring back to Feb 2011 (original secondary MRI) and some ( showing no change) to MRI of Feb 2012. Both clearly indicated on report but easy to miss if you look quickly!He apolygised!
To reassure you with regards to order of anti oestrogens....I think the jury is largely out on correct order of tamoxifen vs AI's but most of the research compares AI's after tamoxifen because there has been a large cohort of women coming off tamoxifen and going onto AI's and only more recently women changing from one AI to another...seems to be art rather than science because what science there is is contadictory...but most use exsemestane after failure of AI. The fact that it attaches "permanently" is not a problem when switching to another hormone therapy becuse the receptors themselves are constantly turning over ...hence you can't only take it for a short period, fill the receptors and everythings hunky dory. It is a very reasonable question to ask the experts however. Good luck. Pamx
Hi Bony Girls
Just a quick note to Lemongrove. I think I'm right in saying that it is the radiologist who interprets and writes reports ie a doctor of radiology. It is the radiographer who takes the pics. I know you won't mind me splitting hairs, but just so you are aiming at the right person! Great work. As you say it is so important to highlight bad practice. Otherwise who will. Most importantly I hope you get things right for yourself. xx
Lemon grove, you are one hell of a woman. I salute you We have to fight fight fight for ourselves. You are totally justified and right to act as you have. Hope you get the answers you need x.
Hi to everyone nothing else to contribute today! Just exhausted. Supposed to be having repeat MRI and ct at end of may, but not heard anything. Do I trust them to have ordered it? Don't know if my treatment is working. Getting pains in other hip now! Xxxx
Thanks for all your kind words. The initial shock and disappointment is over now, so starting to get organised.
(1)Have rung Profs secretary this morning for a copy of the radiographer reports relating to the scans taken in October 2011. I have a feeling the problem has arisen because the Prof didn't look at the scans but relied on the reports, so I would like to know what they said. If they did'nt mention the tumours, I will put it down to a cr*p radiographer. If they did I will conclude that the Prof didn't read the reports either, and start a formal complaint.
I don't want any other woman to go through this shambles, and someone has to make a fuss.
(2) Have rung Cancer Research helpline for information. They were absolutely brilliant, are checking and ringing me back tomorrow.
My concern is that I have been put straight onto Exemestane (which is just another aromatase inhibiter), when it might have been better to put me on Tamoxifen, as it works in a completely different way.
When I was first diagnosed with secondary BC at a different hospital, I was told that when Femera failed they would put me on Tamoxifen, because it works differently. My concern is that Exemestane wont work, because it is another type of aromatase inhibiter, and if it doesn't I might not be able to try Tamoxifen. because Exemestane binds permanently. I want to make sure that the're getting the sequencing right, because I don't want to end up on chemo just yet.
I am so sorry to hear your news. You must feel so let down and it understandable that you have lost confidence in your medical team. I have a bit of experience of being given wrong information. When first diagnosed I was told my mets were extensive, they are not I have 2 spots in my spine and one in my hip. I was also told I had liver mets. Interestingly you helped move the liver met thing along a bit, as I asked for a referral for cyberknife and my scans were sent to off to another hospital. I now know that one of the reasons that I didn't get cyberknife was because there is no point in zapping something that is benign. Apparently we are full of lumps and bumps that show up on scans.
I have been on tamoxifen for 3 years now and seems to be working ok for me.
I agree with others on here you need to get a second opinion as the trust has been broken.
Oh lemon grove, I really am shocked that you haven't been given the full information. You are always so informative and helpful to the rest of us. Really thinking of you and glad you are gutsy and going to make waves. So hard though, don't know how we do it really. Xxx to you and everyone. Hope you get hope and reassurance , that's what we need xx
That is appalling. Obviously, your decision is for you to make based on your own circumstances but I think I would be tempted to get a 2nd opinion from the Marsden whatever - even if they say they would have done the same as your current team based on the info available.
One of my dear friends who passed away very recently asked for a 2nd opinion from Christies (we are in the North-West), not because she was dis-satisfied with her treatment and team but to see if there were any other options/trials available. They saw her for an hour and had read all her notes first and discussed all sorts with her but said they would have followed the same treatment route. I know that was very reassuring for her (and me as we have the same onc!).
I have been on zometa for 3.5 yrs and so far it seems to have worked well. I did have a bit of spread in a rib about 3 yrs ago but had no change in treatment as the onc said it wasn't major enough to worry about. I trust her implicitly and by the time of the next scan, it must have gone cos it wasn't reported.
Hope the scan and your results get done pronto so you don't need to put up with the stressful situation any longer than need be.
HI Lemongrove, i'm sorry to hear about your results, it's very scarey when things change, and i know what it feels like to loose faith in a someone you trusted. I think the Ct will have been ordered as a precaution and hopefully will be clear, it is possible to have spread in the bones without it going to organs. Hopefully the new treatment will get it back under control. I hope you don't have to wait to long for scan and results. I have a CT every three months and the wait causes me huge anxiety. You have been a great source of support to me on this thread on many ocassions and wish you the very best.
LG totally agree with you, none of this makes sense and would make you lose total confidence with your oncologist, cant believe you were not told and also given ct scan then. Be interested to see the answers you get. As you know I am being treated at the Marsden and I personally cannot fault them in any department.
Do keep us informed
Thank you all for your kind words and reassurance. It helps so much to know there are others out there who understand what is going on and how I feel.
Sorry another long one.
Have just written to my consultant as I'm not happy with things. The radio-oncologist I saw yesterday said that the two spine tumours were clear on the bone scan I had in October 2011, and that they even suspected that T12 was diseased as far back as December 2010 (I had an MRI in Dec 2010 following a fall that fractured T12). If my Onc knew for sure that I had cancer in October 2011, and suspected it in Dec 2010, why did he say in November 2011 that there was no evidence of disease? Also, if they suspected cancer in the spine back in December 2010, why didn't they change my treatment - since progression would suggest it was not working, or only partially working.
Am now very concerned that if treatment hasn't been working there could be spread everywhere, and when they do the whole body CT, it will be revealed (and I suspect that's why the scan has been ordered).
If I don't get a satisfactory answer, I'm going to the Marsden.
Hi I'm new to this site. Feeling really apprehensive about latest MRI scan. I have mets in skull, spine, ribs, pelvis and top of thigh bones. I have had chemo in Aug 2010 as it was in breast, lymphs and liver too, and Zometa since then. I was given exemestane, but as I had new mets found in Jan 2012 I've been given anastrazol. I had one lot of rads too my spine in Jan 2011, but was given 10 days worth of rads in Dec 2011 to the ontoid peg area on my second verteabra(?) down in my neck, as I was in terrific pain, as it was pressing on my spinal cord. Since then I seem to have lost my sense of taste! I was told everything should return and they thought the steroids might have caused this. Anyway, thing are still not right and I started getting pins and needles in my hands and from the base of my spine down my legs and this is what I am awaiting the results from the latest MRI.
I would welcome your comments
So sorry to hear this news LG, it is so devastating when you are thinking all is ok and then find out it is not. Lets hope the ct scan is positive then your treatment plan can be decided. Only you can know if you want to change you Prof or get a second opinion, its a tricky one. Please dont feel alone we are all here to listen, support and sometimes advise.
I am on letrozole (femara) for my lung mets and will probably be put on exmethesane when it stops working.
Thinking of you
I am also sorry to hear this news. You have been such a help to everyone else on this site. Hopefully we can return the compliment and give you some support. Not feeling confident with your onc, must be such a blow. I agree with whoever said that you ought to look for a secondary opinion. But who am I to tell you, you know the ropes of the system better than I do.
I have been following this thread closely since my secondary diagnosis, you have all been of great help.
So sorry you've had such bad news. I was also on Letrozole and discovered in Feb this year that it had stopped working. My onc has put me straight on to chemo.
I've been on IV Zometa for over 3 years for bone mets and it still seems to be working really well. So that may be an option for you.
I know it's horrible waiting for scans and then for results. It rolls off the radiologist's tongue that the results will be available in however many days. Meanwhile you're up the pole waiting!
I know you feel like you're alone but we are all here for you and the support you all give each other is second to none. Thinking about you. Hope you won't have to wait too long for your CT.
Hi LG - like the others I am really sorry to hear your news. It's a bit late now taking this all in but one or two comments now I would make are that I thought the damage at T12 was initially put down to a riding accident you had and not to bone mets! Did someone make a mistake here?
I don't know if this is any sort of reassurance because we are all different but my C2 was identified as a real problem when first dx in 2002, because it was in a bad way - it is the axis bone which allows our head to swivel side to side. I had one shot of rads and it has been good for some 10 years (beginning to get a bit sore lately). I do understand the fear when these wretched tumours pop up just when you think everything is stable :(.
I would also question whether you should be changed to zometa - my consultant (the Prof) switched me to it from pamidronate when I was getting more pain saying it was stronger.
I don't have any words of wisdom to offer on the AI's as that is not my dx but can share your anxiety there as I hate it that herceptin isn't stopping more tumours from being found!
I hope that the CT scan is going to be ok and not show up any other problems - but as well to have it done. It is so hard when you have trusted someone's judgement to then find they let you down. Off to bed now - hope you feel better and don't have a sore head in the morning after the G&Ts !!!!!
Dear LG, just seen your post and will be in touch but am just on way to bed and will not make much sense if I reply now. Just wanted to say sorry, that you're not alone, and to send you a big hug. Be in touch soon, keep strong my friend xx
Hi Lemongrove, really sorry to hear about your results and the way things have been handled. I had a bit of a similar experience a couple of years ago when a scan was reported as clear which wasn't and I only found out 6 months later when a different radiologist had written up my next scan and commented on how the tumour had changed from the last scan. I'm sorry that your confidence in the prof has been shaken and I really hope that your CT scan shows no further areas of concern.
I was also put onto Exemestane when my first AI (Anastrazole) failed and was very sceptical about it too but I have had a year of stability on it although my markers have gone up recently so I am having scans in a couple of weeks to check if it is still working.
Hi Lemongrove, I am sorry that you have had all this horrible stuff landed on your plate today. My Oncologist keeps changing my hormone tablets and each change of tablet has worked well for me.
As for your lack of faith with your Prof, I do think that it would be only understandable that you would want to seek out a second opinion. How scared and frightened you must be. To put faith in a doctor only to have your confidence come crashing down. I am glad that a CT Scan has been arranged and I hope you wil not have to wait too long for the results.
Please do not feel that you are alone. We all can imagine just how you must be feeling. Please keep us in touch with things as the days go by. We are there for you. You have been so strong in the past and you can be strong again. Val
Lemongrove, sorry to hear your news......its always such a shock when things show deterioration especially if you feel things have not been handled optimally......I am waiting to go back for MRI results tomorrow after 3 cycles of capecitabine but was fortunate that the radiologist explained today why they repeated some of the scan........I have had a collapsaed vertebra in contact with spinal cord....but he felt largely the same as 15months ago...further info tomorrow! Anyway the reason I'm posting is to say that there is evidence that exsemestane gives additional time without disease progression after other AI failures and the research recommended switching to exsemestane after failure of other AI's.....I looked it up when commenced on exsemestane at secondary diagnosis after failure of primary aduvent treatment with arimidex. Also ask about everolimus.....there has been research showing that this increases time to relapse when given with exsemestane and I think it will be available later in the year.....I would say the radiologist is responsible for reporting the MRI..not the oncologist. best wishes. Pamx
lemongrove I am really sorry about the results of your scan - its horrid anyway having to face this but if you feel let down/mislead by your prof who I know you had complete faith in, must be a double wammy for you. This is a horrid horrid disease but you are not alone - there is tons of support and very good advice on this site as well as some really inspiring and good news stories of ladies who have been treated successfully with bone mets for years, despite initial spread. Take care and lots of hugs xxxx
Sorry you have had such bad news and in a way that could, and should have been much quicker. The worry about further spread must be very real, especially after what has been said to you about your MRI in November. I know you have always been positive about your Prof, but this must have shaken that considerably. I wish you all the best for the CT and that it doesn't show up any nasties. As to switching to another AI I know that's what my onc would do as he said so when I questioned him about if my current one failed. They do seem to work slightly differently to each other and other ladies on here have had success with another when one has failed. Also, do you think you'll ask for a second opinion? I'm sure you know that it may be worth it, once the CT results are known.
Good luck, fingers crossed for you and let us know how you get on.
Ps I see you've had a couple of other posts since I've been typing, hope it all helps with the info side of things and the support.
Lemongrove - really sorry to hear your news and that you've had to wait for such a long time to find out.
Don't panic about being put on the exemestane - my mum had arimidex for about 7/8 years and was swopped to exem when her arthritis hit a bad patch. She has been on it a couple of years now and is ok so far.
How much have the tumours grown since the Oct scan? It's a bummer you were given the wrong info then but it sounds like the radio-onc is on the ball with things. It won't be much consolation for you but I had spinal mets from orig diagnosis that were stable for te most part. Had a bone scan June '10 and all was ok. Then got pain Nov '10, mentioned it at next checkup, had another scan Dec '10 and T9 was completely affected by the cancer in that short time. Had a one-off rads blast and it has been ok since. Fortunately, there was no spread anywhere else. Here's hoping yours turns out the same!
Really sorry ladies this is going to be a long one. I'm also having a stiff gin and tonic as I write this, so may not be as coherent as I would otherwise be.
Got results of MRI today - not good news. Have cancer in C2 and T12 (hence compressed nerve, and pain in neck and skull base).
Very frightened, because it means Femera has stopped working after just 21 months, and two tumours have popped up since October 2011 - meaning things are progressing fast (especially as in October 2011 they told me there was no evidence of disease). Worse still, confidence in my Prof has been shaken for the following reasons:
(1) Had MRI on March 21st, but not told about results until today (so have suffered for a month when I could have recived treatment.
(2) Prof asked radio-oncologist to see me urgently (today), and the radio-oncologist mentioned stuff that really undermined the Prof. The radio-oncologist said he was surprised I had been told that I was NED in November 2011, because the C2 and T12 tumours were clearly evident on the October 2011 scans (so presumably the Prof didn't bother to look at the scans but relied on the radiologists report - which was clearly incomplete). This means that the Femera must have stopped working in Autumn/winter 2011, which in turn means the cancer could have spread anywhere. I think the Prof thinks this as well as he has now ordered a CT of my entire body.
(3) He has now told me to stop Femera and has presctibed Exemestane. I know that Exemstane is prescibed when endocrine therapies fail, but we have not tried Tamoxifen yet (so we have not tried all the endocrine therapies). My concern is that Exemestane is just another AI (the only difference is that it's steroidal), and so unlikely to make any difference.
Sorry to go on, but I siddenly feel very alone in all this. Last week I was planning on seeing the surgeon about reconstruction, but now that won't happen until they can get the cancer under control - and I'm no longer confident that they can do that.
Think it's time for another G&T to drown it all out.
Good luck today with that MRI LG - I do hope it has nothing sinister to reveal. I don't mind the MRI as a form of scanning, it's what it can find that scares me!
Thanks Lemongrove. Not opened the champagne yet as my daughter and I both have sore throats and not sense of taste or smell so have it at the ready when we are feeling better!
Just to wish you all the best for tomorrow's MRI Scan results. Having had 2 lots done last year and one this year myself I know what the waiting game is like. Please let us know how you get on.
I too have the car with the DLA and would be really lost without it. I did try the bus into town and it nearly killed my back. Every dip in the road and I could feel it. Then when the brakes go on it is really sore too.
Oh my OH has just opened a bottle of French White (not the champagne) so the three of us are going to have a glass now.....well who could really refuse.
Hi to all bone mets ladies. Hope you have had a pleasant weekend. Val
Just to say I'm going to get my MRI results tomorrow (Monday 23rd), so keeping my fingers crossed. Still getting pain up behind and above my left ear, and am now taking 2 amitriptyline daily, with diclefenec as a back up. The pain does get better with rest, and worse when I twist my neck to the left or look down for any period of time, so I keep telling myself that if it was C, it would probably hurt all the time - still we shall see.
Scottishlass, really glad to read that your daughter is OK - were the champagne corks popping?
Alex, hoping you DLA review goes well and you keep your allowance. Will be going through it myself next year (that's assuming I'm still here). Have to say I'm a bit worried about losing it because hubby retired at Christmas and so our income is not what it was (my lovely motorbility car would have to go back). Maybe we need a thread to advise how those of us who have claimed under DS1500, should deal with the review. Maybe there are some do's and dont's that we need to be aware of?
I have only just seen that you want to join chat girls.
Find me first and JulieD ( see previous) is admin. We would love to see you there.
Let us know how you get on with your DLA review AlexD. Have missed your posts. Wish you would pop in more often. It would be good to hear how you get on as a few of us Secondary ladies are worried about what they are up to with awards now. There is even a heading on BCC about DLA where a few of us have posted to keep everyone up to date. I like the sound of your new car but think the seats may be too low for me. But wouldn't say no to a wee shot ( a try) of it! I hope you are keeping well and getting on with the good things in life. Keep posting. Love Val
Val and JulieD
I am keeping well at the moment. Purchased a new car a few weeks ago, it's a mini countryman and I love it. I am due for DLA review and am anticipating that it will be stopped. I am not overly concerned as I am fortunate enough not to rely on it.
Wow, fantastic val! Brilliant news!
Sun is shining today, rain is around, but I hope everyone is doing ok today xx