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Inspiring secondary stories.
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.
Take Care..xx
I love reading your posts Belinda! xxx
Oh thank you Annie!
I think we are both on Capecitabine? I hope it's working well for you..x
Hi,
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?
Annie xxxx
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!
Belinda..xx
That's working well for me too.... you are truly inspiring Belinda.... I hope to us all xxx
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
Annie,
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!
Snoogle
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
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
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 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
Welcome Alison,
Please don't be afraid or worried to post. I personally have received a lot of support and good advice from these forums.
Snoogle
x
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
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,
Nicola
Hi all,
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 !
Liz
FANTASTIC news Liz!
I am delighted for you, long may it continue!
Hi All,
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.
Love
Chris
xxxxx
Hi Liz
Absolutely fantastic news such an inspiration and comfort for us all. Good luck with your walk Chris and well done.
Love Anne x
Great news Liz - long may the good results keep coming - for you and all of us
Nicky x
Hi all,
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.
Liz x
liz, just seen your post. brilliant news about your scan, and I,m glad you're feeling so well.
Love Nicky
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.
Hi lemongrove
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.
finty xx
http://jnci.oxfordjournals.org/content/102/7/456.full
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.
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. :-/
A very interesting read.
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!
An article from a woman diagnosed stage 4 twenty two years ago.
http://www.telegraph.co.uk/health/8125564/A-life-with-incurable-breast-cancer.html
And the story of Rita Arditti who lived with stage 4 for over 30 years.
http://bcaction.org/index.php?page=bca-remembers-cancer-activist-rita-arditti
Keep on posting links like this Belinda!
This is definately what we should all be reading :
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