hi annie. Im on day 12 of my first cycle of capecitabine. Im due to have TMs tested on the 6th sept and see onc on 13th. It seems too soon to know if the cap is working. I have lung/liver/bone mets. Although bones and lungs are stable new growths have been found in liver. Hence the cap I have had no side effects as yet apart from feeling tired. Hope this is not a negative.
Thanks, DGW, for providing such inspiration. I was originally diagnosed 2003, then found had returned in my lymph nodes in my abdomen and neck this September. The oncologist gave me 2 years which was absolutely devastating to hear. However, started Docetaxol and Herceptin. Have had 3 cycles so far. Was due the next on 23rd which is my birthday, but decided to delay it a week so I wouldn't have a rubbish birthday and rotton Christmas. However, had a scan last week to see if it was working. My oncologist rang me with the results on my birthday - nodes in my abdomen shrunk to normal size and the one in my neck from 2cm to 5mm. It had grown very rapidly between having my first scan and starting chemo. I think it was nearer 2", so it was the best birthday/Christmas present I could have hoped for and certainly makes me feel more positive about having the chemo next week. I am about starting to read the Anticancer book, and my sister works for a therapy centre and is regularly plying me with different supplements, etc. I felt absolutely desperate when I got my second diagnosis but this place is absolutely brilliant for providing hope and inspiration. Thank you all so much and I hope you are all having a merry Christmas and wish you all a happy New Year. Chris23 xx
OK here's another good story.
The drug manufacturer of Reolysin ( Oncolytics), has published the results of a Trial conducted at the Royal Marsden. It hasn't been tested on Breast Cancer yet, but they have started trials on Ovarian Cancer (which is closely related). I believe that in the next few years, Doctors will combine Reolysin with conventional and stereotactic radiotherapy, and the days of metastic cancer being a life threatening disease will be past.
Happy belated birthday debonair - hope you had a great time! Talking of wrinkles - did you know that gillian mckeith and nigella lawson are the same age? They are both 51. Maybe it's not anti-wrinkle cream we need - maybe it's chocolate cake!!!
Thanks so much for your comments, truly inspirational
Do let us know how you get on with the new book.
Have any of you been to one of The Haven's
Very short post - accidentally took a sleeping tab instead of citalopram today - what an idiot!
Well said DGW ! I am two years on from initial diagnosis and altho have a few probs at the moment I know they will be dealt with and I will continue to fight with all my worth. I am 50 today so can I borrow some of that wrinkle cream ? LOL, take care, Deb x oops I mean ANTI wrinkle cream !
Leo73 - yes it took me months before i felt able to look at forums like these. It made everything feel too real - i preferrred to pretend it wasn't happening for as long and as often as i could - difficult as it's all you can think about really! have just finished reading Dr David Servan-Schreiber's Anti-Cancer book and loved it! If you haven't already had a look i would also recommend Chris Woollams's books and his website Canceractive. Have also just ordered Dr David Hamilton's How Your Mind Can Heal Your Body - sounds fascinating - will let you know how i get on!
It is good to focus on the positive stories which is why this thread is brilliant!
After i was told of my diagnosis I sort of came came away from the hospital without an understanding of how serious it all was - although I understood this now meant my cancer was no longer 'curable' my onc had said he had patients that were still around even 15 years after diagnosis. I now know that they can't really give you a more definite prognosis cos no-one really knows for sure what will happen. so after i'd been diagnosed i started to look at survival stats online .Then immediately wished i hadn't -managed to scare the sh*t out of myself ! I suppose i was trying to get answers after not really getting much info at the hospital. the 'average' life expectancy from diagnosis seemed so frighteningly low but there were a few people out there that seemd to have survived for many years. I spent a long time trying to make sense of this and work out where i fitted on that particular timescale. Although my oncologist offered a few words of encouragment he was unwilling or unable to give me much of a steer as to what to expect or hope for.
My way of trying to sort it out in my head after speaking to him, was that i could probably justify renewing my passport but could most likely cancel my pension plan and stop buying expensive anti-wrinkle creams! After reading this thread though I may now have to revise that upward figure with all these great reports of women who have seemingly doubled that 15 year survival rate or could even be considered to have been 'cured'.
What did jump out at me when reading up on the subject was how important it is to remember that we are all unique, every situation is different, your cancer is as individual as you are and your life expectancy is influenced by a huge number of factors -no-one can say for sure what your particular outcome will be. Doctors are generally unwilling to pluck a figure out of the air when asked the question "what can i expect, how long have i got" , which is why you resort to digging up any statitics you can find to hand and generally these stats give a rough idea but can often be unhelpful (read:terrifying!).
I found it really comforting to read what Maggie Keswick Jenks (who helped set up the maggie's cancer caring centres ) wrote in her pamphlet "View from the frontline" about the scientist Stephen Jay Gould and the rare cancer he developed in his thirties. Literature described it as incurable, with a "median" mortality of eight months after diagnosis. As a scientist tho he said he quickly realised that "median didn't have to mean me" and that knowledge was power. A graph of cancer survival rates tends to follow the shape of a bell curve with a long tail. once he counted up the reasons why he was unlikely to be at the highpoint of the curve he stopped panicking: he reasoned his chances, being a young, well-educated scientist with a strong will to live, were much better than the median. Mentally he began to push himself down the bell-curve and along into the tail.
That's what we all have to do - every little thing, be it positive thinking or diet, conventional treatment or alternative therapies - whatever it takes to push us just that little bit further along the tail of that bell curve! That's what i am trying to do - edge myself ever further from that paltry 2 years and ever closer to that magical 30 year mark, little by little, day by day!
I may have to buy that anti-wrinkle cream after all!
This is the first time since my diagnosis on 24th August 2010 that I have "dared" look at a forum, and I am so pleasantly suprised and uplifted. Well done all of you!!
I was diagnosed on 24th Aug after finding a large lump in my left breast on 13th August. A week later I had a wide local incision and lumpectomy, then a ct scan which revealed I needed a mastectomy and that I had mets in T11, T12, C7 two small areas in my hips. After an mri and visits to my onc I discovered that T11 had collapsed and needed a vertabraplasty (bone cement). This was done a week before radio on T11 & T12 - 5 sessions, followed quickly by my first session of FEC chemo (was incredibly sick so the next two were as an in-patient and prescribed Emend)I have now had another ct scan showing no soft tissue tumours but changes to C7 and something around the sternum so am off to have a second isotope bone scan on WEdnesday, if I can get rid of the back spasms that had me in A&E early saturday morning! Depending on the results I will either now go onto Tamoxifen if the bone mets are worse or chemo again next week if the changes are good ones!
I have not asked my onc for a prognosis as I am me and not any other statistic.
I can't believe all this has happened in such a small space of time - we have all gone through such amazing emotions both good and bad. I am so pleased to see that there is hope, I am in general very positive and have a beautiful 15 month old daughter, a great , supportive husband and the best parents and friends I could wish for.
I am a great believer in combining western medicine and eastern traditions and have been greatly inspired by the principles of Dr David Servan-Schreiber
I have to go and watch my daughter climb the stairs now - an amazing sight!
Hi Belinda, I really feel for you, losing those dear friends. Till the end of her life, my mum kept all the little gifts and trinkets she'd been given by the friends who had passed on, and I know she never forgot them. I consider myself to be very lucky. I had a mastectomy, chemo, rads and am now on Tamoxifen, but so far so good. I was drawn to this thread when I saw the word "inspiring" in the subject heading, and I really think we could all do with more of this! From what you say, you've been living with secondaries for a while now, and I really wish you all the best. Squirrel, x
Hi Squirrel, thanks for adding your story about your amazing Mum. I can relate to it so much as a few years ago some of us, from the older BCC forums, with secondaries, formed a group who met up and got to know each other very well. Only a small number of us are left and there are times when I long to speak to those now, long gone friends for advice and reassurance.
I hope you are well. Hope is a precious thing, I lose it at times but then I somehow manage to find it again. Belinda..xx
Although not to do with cancer, this might help give some people hope. My mother had tuberculosis in the 1940s, when she was in her twenties. At that time very few people survived having it. She had part of her lung removed and wasn't expected to live for very long and of the 22 women who were in the sanatorium when she first went there, 19 had died. And then a drug, Streptomycin, was discovered. It was given to my mum and she pulled through and lived quite an active life until she was 80, eventually dying of heart problems. I was diagnosed with bc four years after my mum died. While I'm glad in a way that she wasn't around because she would have been so scared for me, I often wish I had spent more time talking to her about her experience, and how she never gave up hope. I must admit that I do feel hopeful about the way cancer will be treated in future. Perhaps there won't suddenly be a magical cure, but I do think it will become more and more controllable.
Thank you, so much, for posting about your Mum dibskelly...what an inspiring story.
Very Best Wishes and Good Luck with the rest of your treatment. x
My mum had BC aged 47, mastectomy, and then secondaries in her brain. The doctors gave her 6 months to live. She had chemo and lived another 27 years (and didn't die of cancer).
She was a cancer researcher at B'ham University and always thought diet was very important. She took lots of vitamin supplements every day and ate all sorts of odd things like bean sprouts and home made yoghurt. As kids we thought she was quite bonkers, but it seemed to work for her.
Some might find this a helpful read..
this book is now hard to get and out of print but you can read and choose chapters online.
I've always found this little paragraph from the book comforting, we are so much more than mere statistics. In hope for us all..xx
''Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.''
Hi Avril and all, I always go back to some of these stories when I'm feeling, having a wobbly moment. Such early days for you, it takes time, I think, to get your head around it all...I'm still only just getting there. Take Care..xx
hi ladies, this is realy wat i need to read more of..positive reports, only receved the news about secondary last friday so still new, raw and very frightening. Started chemo yesterday have to admit the process wasent as bad as i thought it would be, but im finding that im just sat here waiting for side affects and was frightened of going to bed on my own last night...but im still here this morning...Avril xx
An article from a woman diagnosed stage 4 twenty two years ago.
And the story of Rita Arditti who lived with stage 4 for over 30 years.
It would certainly be FANTASTIC if this were the case! 🐵
Thanks Charlie Ray! but like Belinda, my brain found some of the interpretation a bit hard going for my delicate brain!
If anybody can summarise the main points in 'brain-friendly' simplified language I would be so so grateful!
Thanks CharlieRay, what an informative and interesting link!
It really is worth reading ladies...I will read this again when I'm more alert..I'm at the end of my 3 weekly chemo cycle and my brain is mush at the moment. 😕
Ladies, please have a look at this link. It shows that in some cases, especially with limited spread - it IS possible to cure secondary/metastatic breast cancer.
That's "cure" as in the dictionary definition: 1 make a person who is ill well again. 2 end a disease or condition or solve a problem. 3 preserve meat, fish etc. by salting, drying or smoking.
I copied this out of the dictionary so definition No. 3 is probably of limited relevance here...But what is relevant is that it really is possible, now, today, tested and proved scientifically, to CURE secondary breast cancer in some cases.
I am so pleased to read your story, because mine is very similar, except my single met is a small spinal tumour. It's the first time on here that I have heard someone else with a similar story. I also believe there is a chance, however small, of preventing further spread by aggressive treatment of the met. My onc agreed, and we then persuaded my rads onc to go for an obliterative dose of rads to the spine. I also had my treatment at the Harley street clinic. It's high risk because if it doesn't work I can't have rads again to that spot - the only reason I took the risk is that we were assured that cyber knife would then be an option - I hope they are right! I also had aggressive treatment for the original breast tumour - surgery, chemo and 25 rads. So only time will tell whether it is a gamble worth taking - but I reckoned even if the chance of success was only 2 or 3% it was worth it.
I am currently on Avastin and Zometa, and will go onto Femara next year when the Avastin finishes. I would be very interested to hear where you are being treated and whether the onc you saw has been successful in this approach in the past.
Hi I've never posted on here before - although Dawn knows about me from another site.
Well my story is as follows: In November 2009 i was just about due for my three yearly mammogram, when I felt a lump in my right breast. Just before Christmas 2009 I was diagnosed with Oestrogen receptive BC, and in January 2010, I had a mastectomy with Lymph Node Clearance. They then discovered that 14 of 24 Nodes were infected, so they did a number of scans and discovered that I had three mets on my bone (skull).
Initially, I was told that I would just receive Femera, and Bisphosphonates, but I had read that some Doctors believe that if metastasis are isolated, and caught before they have had chance to spread throughout the body, that metastatic cancer can (with very aggressive treatment), occasionaly be cured/or result in a longer life expectancy. Consequently, I decided to go elsewhere. I did a little research about the best place to get the kind of treatment I wanted, and asked for an appointment with the Senior Oncologist.
Following Consultation, I immediately started Chemo (6x FEC 75). This was then followed by 25 sessions of conventional radiotherapy to the mastectomy site, lymph nodes, and neck area. I also started Femera, and oral Bisphosphoneates. Following all this, scans showed that the mets had virtually disappeared, but a decision was made to refer me to Harley Street (as an NHS patient), for Cyberknife treatment to finish off the skull mets. The reasoning was that conventional radiotherapy was not an option, because to use it at the level necessary to destroy the skull mets, could possibly damage my brain. Likewise, surgery to remove part of my skull, was considered a step too far. However, Cyberknife is suitable because it is so precise it can be used at a level that destroys mets.
Anyway, referral was made to Harley Street, and a panel of twelve Specialists there agreed the treatment would be beneficial. However, West Sussex Primary Care Trust refused funding (as Cyberknife treatment costs in the region of £22,000). Fortunately though, the London Clinic generously agreed to waive half their Clinic fees, and the New Victoria Medical Foundation agreed to pay the other half of the Clinic fee. The Doctor who will be treating me has agreed to waive his consultation fee, and halve his planning fee - leaving £3,500 that my Husband and I will pay.
Obviously nobody knows if this strategy will work. Even if the skull mets are destroyed, there is no guarantee that mets won't pop up elsewhere. However, it is now ten months since diagnosis, and so far things have improved. In January this year I had cancer in my breast, my Lymph Nodes, and between 5-10% of my skull. Now, the primary cancer in my breast and Lymph Nodes has been removed; the mets in my skull have virtually disappeared (and will be gone after Cyberknife), and there is no evidence of spread anywhere else in my body - and with Gods blessing that is how it will remain.
Thank you very much for your comments - it's great that we can all share good news on here and I think it provides such a boost to everyone so long may we all be able to share such things!
Chris - soooo glad you loved Rome even if I am very jealous.....get you being delayed by the Pope!! Look forward to 'speaking' and hearing about it on Tues.
Absolutely fantastic news such an inspiration and comfort for us all. Good luck with your walk Chris and well done.
Love Anne x
Just wanted to say what fanastic news Liz, I'm so pleased for you. Got back from Rome yesterday, was delayed by 1.30 because of the Pope's visit. Finally got home art 11.00pm very tired, but we had a lovely time.
I think this post is a lifeline when you've just been diagnosed, which is a dark and scary place, the unknown is always the worse. This time last year I was so ill and awaiting for my demise. but I'm a different person now that I've been through treatment.
I totally agreed with Nicola you've got to living your life and make the most of what you've got. I try and put BC to the back of my mind and plan lots of different things to do and always have something to look forward to.
I'm just getting ready to go on the Moonlight walk in Herne Bay, got all the gear to dress up plus taking my youngest daughter and a couple of friends along so such be a laught. Got my husband to marshall.
Take care everyone and I'll talk to you Liz on Tuesday - once again brilliant news.
Back from my 3 month check-up and all appears stable so I'm happy. The doctor did a full examination of scar area, lymph glands, lungs etc,etc and said they were all looking good, as were my blood tests each month. Keeping on the zoladex, arimidex and zometa as long as they work and next appointment in 3 months.
Hope my good news passes to everyone else with mets. 3 years ago I would never have believed I would still be here and feeling so well. Hope to be saying the same thing in another 3 years and 3 years after that too !
Hi Nolly and Alison
Sorry that you are finding yourself in here. I am glad that you are finding positive stories inspiring. Belinda and Val(and numerous others) have been very good at turning my thinking round from 'dying of cancer' to 'living with cancer' and believe me there is a huge psychological difference.
I felt very similar to you this April, when I discovered I had bone mets, after initial diagnosis at the end of 2006. I mistakenly asked what my prognosis was (knowing what I now now, this was a silly question and the onc should have told me that there were too many variables to answer it, but he didn't and he scared me!) I then came onto this site and Belinda responded sraight away and I immediately knew that that was what I wanted to hear and I have listened to others on here instead.
In April I felt dreadful, each time I went for an appt they revealed another area that had mets. I had a CT scan which revealed a had another breast tumour and a growth in the soft tissue somewhere near my aorta (I freaked at this!) I was mentally planning my demise and crying regularly. As time went on, mainly due to support I received on here,I began to feel more and more positive and then I had a repeat CT scan last month and had the results 2 weeks ago. There is no further spread and a possible slight reduction in my breast, which demonstrates that the hormones I was changed to are working!
I guess what I am trying to say, amid my ramblings, is that we all understand how scared you are feeling now, most of us have been there at some time (and go back there now and again) but there are other times when hopefully you might feel more positive and just want to get on with your life. I am totally aware that I could feel different at any time but for now I am enjoying living my life and don't want this bl**dy BC to affect my life mentally as well as physically!
Hope we can continue to be of support,
Hi all, just had the courage to read this page as some of the others are too frightening at the moment. Just been diagnosed with secondary in the bone of my shoulder after finishing treatment for primary breast cancer end July 2008. I've just had my 43rd birthday and I'm waiting this week for a CT scan to determine if it's anywhere else. This page is the sort of page I want to read at the moment - the positives about living with secondaries, so THANK YOU all so much xx
Please don't be afraid or worried to post. I personally have received a lot of support and good advice from these forums.
Hi Alison, Glad you have found the site yet sorry too that you have also been diagnosed with breast cancer. Please keep in touch with us all. there are lots of lovely ladies on here with secondaries so you are not alone. I have had bone mets for 11 years now. Please keep posting and if you prefer you can send a Private message ( a PM) to any of us if you wish. I hope you get lots of support from the lovely ladies on here and will look forward to hearing how you are doing. Love Val
I have posted this on behalf of new user Allison.
Regards Sam (BCC Facilitator)
Hi, thank you for this posting. This is the first time I have had the courage to read the discussion forums as i am usually frightened at what I might read. I am 38 years old and was diagnosed with primary breast cancer in Jan 2009 and secondary breast cancer in Feb 2010 (liver, lung and lymh node mets). I have two young children and a great husband. It is great to hear that there is hope even with a secondary diagnosis. Thank you so much. Allison x
Hi Ladies, Just found this thread and thought I'd drop a line or two into it! As some of you know, I have secondaries in my liver and spine and after having had 12 weeks of Tax which didn't work, I was put onto Arimidex. I also take Bondronat for the spine. I saw the onc yesterday and I'm delighted to report that the tumour markers have dropped to an incredible degree and my liver function is almost back to normal. I only have to see him every 3 months now when I will have a blood test and hopefully the results will remain good for the forseeable future. It's so nice to be able to post some good news for a change. The se's from the Arimidex are aching bones and muscles but I've been taking Glucosamine with Chondroitin and MSM for the last fortnight (3 a day) and I can hardly believe it - but it seems to be effective. The joints are much easier now. I could barely turn my neck a couple of weeks ago and now there's virtually no pain at all. Amazing.
I hope that you are all feeling well today and whatever you are doing, enjoy! Lots of love, Dianne x x x
Hi Snoogle, I was given a 50% chance of surviving 2 years......that was around th4e year 2000......guess I must be as stubborn as you! They just don't know and I hope your treatment works for you for years to come. Love V
I am on the combo of capecitabine and lapatinib, although having a break from the chemo due to toxicity. I found I got very tired on the capecitabine although I am not sure if this side effect is more prevelant in those taking Lapatinib as well. Any thoughts anyone? Anyway, good luck with it. I get my latest blood test results tomorrow and find out if I'm going back on capecitabine. I was originally given less than 12 months 17 months ago, but I always was fairly obstinate and never like being told what to do!
Hi Belinda, I am an admirer of you too! Love to read your posts.
I came off Capacitabine around December and it has been good to have a break from it this summer. As you know Belinda I have had a secondary diagnosis since 1999. For thise who don't know me I have bone mets in Spine, ribs, thorax and pelvis. I have many painkillers including morphine and am taking Bondronate every day for bones. There are times when I am not so well but am having a good spell....touch wood. I see my VConsultant in a few weeks for ususla 3 monthly check-up...but don't expect to change anything at this stage. I have been told that I will probably go back onto Capacitabine if this change. Meanwhile I intend to enjoy my little spell of freedom. Love to all and always around if any newbees want to chat.....but you too Belinda! Love Val
Hi again Annie, I've been on Capecitabine since Spring 2008. 2 weeks on and a week off. A high dose, 2,000 mgs twice a day. I feel well, perhaps a bit tired on the last day of the 2 week cycle but ok apart from this. I have had the dry feet, heels side effect but use the Udderly Smooth cream lots of us use and it's okay, manageable. My hands have been fine, no problem at all.
This is my first chemo and for me it's been a kind chemo. I will stay on it for as long as it's working. I haven't had any detectable active cancer since a couple of cycles into this treatment.
I hope, once your cold is over, you will find this a kind chemo.
I hope Lapatinib is also kind..and very effective!
I started capcetabine and Lapatinib on Friday. I'm really lucky to get Lapaatinib because its not widely available on the NHS. I've had a really bad cold since last week, which I'm taking antibiotics for, so its trickey to say what side effects are coming from where. I feel nauceous most of the time and I am overwhelmingly tired, but that's all so far. I'm pretty hopefull that when I've gotten over my cold, I'll feel better.
Coming to terms now with my secondy diagnosis, which is half the battle. It's still early days in this chapter. How were your SE's?
I've posted these links many times (sorry!) but for new people diagnosed with secondaries..
http://www.bcna.org.au/sites/default/files/messages_advanced_cancer_0.pdf ..australian women living their lives with secondaries
and this from BBC news.. http://news.bbc.co.uk/1/hi/uk/5389426.stm
and my own story, if it helps anyone. I was diagnosed stage 4 from the very beginning when my hip spontaneously fractured. This all happened in 2003 when I was in my early 40's. I had a very successful hip replacement. I'm still here seven years later thanks to good treatments and good responses to those treatments. I've had many of the last seven years in remission, (no detectable active cancer) still am in remission and I feel well.