Morning everyone. Sounds really good about the new trials they are doing to help cancer which has spread to the bone. Hopefully it will not be too long before it is made available. Hope it is available to everyone one not just where you live and what hospital you attend. Nice to hear from you again Belinda. By the way have you got any holidays planned. Hearing from people on here helps me a great deal.
Speak to you soon.
Hi again Lyndylooā¦I live very close to the coast so not planning anything at the moment as I can have lots of days at the beach just 30 mins away. 
Plus the weather has been marvellous!..xx
Have second opinion meeting with specialist at the Marsden tomorrow and will mention Jagged1 to him. He specialises in metastatic BC.
Hugs to all
Xx
hi Everyone, Just thought I would join in. I have bones and Liver metz and about to have an MRI to find out if the Capcitabine & Lapatinib is working ā¦ .
Hi Karen R - not seen you on here for ages - let us know how you get on and good luck with your scan xx
Belinda - do u ever go down to Mundesley beach - we have a beach hut there and spend a lot of time there with the kids when the weather is good ?? xx
Not been on for ages Debs, think it was back in Jan 2010, i been too busy with living he he, been up to all sorts and even went on a roller coaster . . .Shssss donāt tell my spinal surgeon lol xx
kerenr, thats the kind of post i loveā¦might just chance the big one a blackpool
Hi karenrā¦I hope the MRI show Cap and Lap are working wellā¦Iāve only just noticed your blog and I just had a quick look but will pop in again. Have sent you a PM 'cos I wondered if you knew if a forum poster who hasnāt posted here this year was okā¦x
Hi Debsā¦wondered just this week how you wereā¦have sent you a PMā¦x
Hello everyone, first time i have entered the forum, so far simply havent had the courage. i was dx wih bc july '10, followed by mx, 6 chemo, and radio. at same time i had ct scan and full bone scan. ct scan clear, bone scan showed up patches on lower part of spine, sorry my technical knowledge isnt great. honestly believed it to be arthiritis. nearly 12 months later suggested to follow up with MRI scan, and was told it was cancer, - patches?? still there but not changed in any way. i hae tried to remain positive, continued to work even through the chemo., but now i am at my wits end the thought of living with this ātime bombā is truly getting me down. i have been given bondronat, and 1 blast of radio. still continuing with tamoxifen. what i would like to know is zoladex a better choice now, - is there anything treatment i should be pushing for? so far have totally trusted my doctors, but my fight for life is now def. on. ps. very few times i have viewed these forums i have been blown away with how positive and reassuring people have been. many thx. to all of u in cybeland. xx
Hi Lands - sorry you have had to join us but glad you know you are thinking about treatments. At the moment Iāve had Zometa alongside some chemo and am now on the Bondronat too (DX in April '@10) - not sure that this is holding my bone mets but get scan results next week so am keeping my fingers crossed. Was the radiotherapy to reduce pain in a particular area?
Iām sure others will be along with info - like you I find this thread really useful
Take care
Fran
I was diagnosed with bilateral breast cancer 5 years ago. I had a bi lateral masectomy and 8 sessions of chemo followed by 25 sessions of radio.Three months ago they found I had bone mets in in my spine and hip and I started zometa monthly and femara. Last wek I had a PET scan which showed there were more hot spots and that the femara didnāt seem to be working. Seeing the onc tomorrow to discuss capcetibine chemo, think this is the one that can effect the hands and feet. Just feel really disappointed that the first treatment hasnāt worked and nervous about chemo again.
Has anyone else experiences of this drug?
Hi lands
I am so sorry you have had to join us - but youāve come to the right place for support and advice. It is really good that you are looking to take control and pro-actively manage your treatment - it can be tough to do the research, but I am convinced it can make a difference to treatment and outcomes. Some oncs are marvellous and will always push for the best possible treatment - but others can take a much more passive approach that may not be in your best interests - so you need to always know what your options are.
If I were you, the first thing I would do is find out exactly where the bone tumour/tumours are and how big they are - and then make absolutely sure there has been no change over the year by ensuring they had a suitable baseline scan to compare against. If they canāt be certain, I would ask for a second bone or CT scan to compare with the one taken a year ago - it is important to be sure that the mets are stable. Then research whether you are a suitable candidate for Cyberknife treatment, which can destroy spinal tumours.
finty xx
many thx. to the two ladies who have replied so promptly. - will def. quiz the onco. a lot more. - not sure as to size, but asked her about cyberknife, and she convinced both me and hubby that the āmachineā they have was just as good, if she thought it would help she said she would of refered me. baseline scan good idea though. Docā¦ seems happy at moment to not push for any further scans/chemo etc etc. have had treatment at Christies so i hope my trust is not misguided. not showing any symptons or pain, so i guess thats good. many thxā¦xx
lands - if the machine they use means normal rads, Iām afraid it simply isnāt true that it is just as good - you are being fobbed off. Normal rads will be able to treat the tumour palliatively - for pain relief - but that is all, you will still have a tumour that can carry on growing. Cyberknife will kill the tumour without damaging surrounding tissue, so it could leave you NED. I have recently had Cyberknife treatment, and it is well worth fighting for. If you need to make a case for it, start researching oligometastasies and the approach taken at the MD Andersen Centre in Texas (which has the best bc survival rates in the world) and the improved survival rates for early bone mets that are treated aggressively rather than palliatively.
hi ladies, just wanted to tell someone about today, my stepmum is in our local hospice and we have beeen told she is unlikley to make it through the day she has bc and sec, my 24 yaer old daughter was told this morning she has cervical cancer and needs a hysterectomy, was ment to be going away nxt monday only to a pontins with daughters and grand kids it was to celbrate me feeling back to normal after chemoā¦just need to concentrate on my daughter and her wellbeing now. feel like my heads gona burst
Dear Avril, just read your post and wanted to send you a hug ! So sorry to hear of all your troubles. I hope evertyhing goes okay for your daughter - she is very young but fingers crossed it has been caught early. I understand most hospices are absolutely brilliant so I hope your step mum is as comfortable as can be. You still have your good fortune to hang on to - you have been through a lot personally but you are still here fighting and supporting others - I hope someone is there supporting you as well. Hang on in there xxx
Oh Avril, I am so sorry, what a dreadful time for your family. Thinking of you. xxx
thanks debonair and flinty, the hospice have been fantastic and i was very impressed how nice and not like a hospital it is,my daughters Drs are very hopfull they should cure the cancer by surgery she is going for a mri scan on monday (last july she was dg with skin cancer in her arm that resulted in having a large chunk, for want of a better word, took out)oh yes and im 51 tomorrow wen i think back to my 50th wat a totally differant life i had, nice life good job and more importantly a healthy daughter
Iām so sorry Avrilā¦hope your daughter is very, very soon on the mendā¦you have such an awful lot on your plate at the momentā¦you take careā¦xx
For donns58ā¦Hi, I was diagnosed with bone mets in 2003ā¦in 2008 I started my first chemo, Capecitabine, after 5 years of hormonals. Itās still working really well 3 years laterā¦most seem to find it much kinder than other chemotherapiesā¦Good Luckā¦xx
Hi Belinda, thanks for that. Just being reassured makes so much difference. Glad to hear your doing well three years on. Iām going to the hospital in the morning, think I will feel better once iāve seen the doctor.
For Avril, donāt know what to say other than Iām thinking of you and your family. Youāve been through alot too so try to take care of yourself too. Lots of love x