Hello, just thought I’d re-introduce myself. My name is Tina, I’m 43 and was diagnosed with bc and bone secondaries in August 2006. I had a mastectomy, WLE (14/29 positive) and commenced on Arimidex and IV Pamidronate. My bone secondaries were in skull, arm, ribs, sternum, spine, hips. I had a bit of time off but went back to work and fairly normal life (apart from some pain issues) until this May. Then I had a seizure one night. I woke up on the sofa, not remembering anything, but I’d bitten my tongue and obviously been upstairs where I’d fallen. I was put on Phenytoin (anti convulsant drug) and was scanned. They found a sizeable tumour in my meninges and mets in my liver. For those of you who don’t know, a tumour in the meninges is really bad news… I am about to finish five weeks of radiotherapy to my brain. I will then be scanned whilst having a few weeks off, then they want me to go onto chemo.
So - hello again to those that remember me (Belinda?) hello to everyone else! I am retiring from my NHS job so I should be around to offer some support and have chats.
Hi Tina,
In “normal” circumstances I would welcome you back but I will say it’s nice to see you posting on the site.You will as you already know find a lot of supportive and friendly ladies on this site who are available to have chats and listen to all of your worries. I am a newbie on the site dx Nov 2010 and have found it a valuable source of support. I hope someone that remembers you comes along soon to chat if not I’m afraid you’re “stuck” with us lol
Hope your feeling ok
Lizz xx
Hi Tina,
Just wanted to say hi in response to your post. So sorry to hear your news,hope your brain radiotherapy hasn’t been too awqful and really hope it has done a good job!! Do you know which chemo you will go on to?
I had my primary dx in 1999, had WLE,rads, chemo, tamoxifen and an oopherectomy. Thought I’d beaten the b****r when I reached my 10 year anniversay but dx with bone mets March 2010!
I’m sure we’ll get to know each other quite well over the coming months - welcome back to the forums though I wish none of us had to be here!
Julie
Hi Tina, i wish u didn’t have to join us again but welcome. I’m newly diagnosed (june 2011) & so far have had a WLE & axillary sampling, unfortunately it was in my nodes so back in for an axillary clearance & have a bit more margin taken. Get my results next week from that surgery, then if ok will have chemo,rads & hormone therapy. I’m sorry to hear ur news, hopefully they can zap the blighter into oblivion. Looking forward to hearing from u in ur posts x
Hi,I remember your posts and I’m really sorry to hear your news Tina…5 weeks of rads must have been really difficult. Will you be having Capecitabine? I understand this chemo passes the blood, brain barrier. I’m on it at the moment, I’ve been on this chemo since April 2008, and it’s a kind chemo. Whichever chemo you’re having I hope you get some good results…you take care and keep in touch…xx
Welcome back to the forums, but so sorry to hear of your latest diagnosis. If you need a little extra support the helpline staff are here for you, just give them a call.
Hello Tina, just want to tell you about my treatment, as it may give you an idea for your own.
I also have bone secondaries in my skull (was diagnosed with BC in November 2009, and they found the mets in my skull shortly after my mx/node clearance in Jan 2010). As the docs could not find mets anywhere else, a decision was made to try and get rid of the skull mets, in the hope that this would prolong survival (I was also aware that skull mets can spread into the menanges and put pressure on the brain, and so wanted to get rid of them). Anyway, I had 6 cycles of FEC (to try and get rid of any micro-mets in the bloodstream), then I had 25 sessions of conventional rads to the mx site, nodes and neck. After the skull mets were nicely shrunk, they then referred me to the London Clinic for Cyberknife stereotactic radiotherapy for my skull mets (at that time Cyberknife was very new, so only available privately, and my treatment - which cost £22,000 - was paid for by charity, as my PCT didn’t fund it). The reason I had Cyberknife is that it is a form of radiotherapy that is so precise, it doesn’t harm healthy tissue, and so can be used at a curative dose (also conventional rads would not have been suitable, as it is too imprecise for areas like the skull, due to the proximity of the brain and in most cases, is only ever given at a palliative dose). Anyway, it appears I was the first person in the UK to have Cyberknife for bone mets, and I’m pleased to say that since having Cyberknife, there has been no progression at all. I have since been on Femera and bondronat, to try and prevent a recurrence.
Now I do know that Cyberknife can be used on any area of the body - although another type of rads called gamma-knife is more frequently used on head and neck cancers. But the advantage of Cyberknife is that it fires hundreds of radiation beams from a robotic arm. Each beam is too weak to cause any damage to heathy tissue, but when all the beams collide in the centre of a tumour their effect is multiplied many times over to a curative level. The precision is also enhanced by a camera which takes thousands of images of the patient during treatment, which are fed back to the computer, which in turn can make tiny adjustments for movement.
Anyway, just thought I would tell you about this, as it’s something you could look into. Since having Cyberknife, it has become available within the NHS (Mount Vernon Hospital, The Royal Marsden, and Barts have it), and the National Radiotherapy Implementation Group have recommended funding. However, there is still a postcode lottery with regard to funding, and so I have set up a petition to campaign on this issue. I have also joined together with 8 others and we are now setting up a charity to raise awareness of Cyberknife, provide information about it, and advise people how to get it (fortunately Accuray provided a littel funding and staff for this).
If you would like any other info about Cyberknife, please pm me.
Thank you for the lovely welcome! Hello Belinda, good to hear you’re doing well . Julie, my onc wants me to have FEC but I want Cabecitabine. Up for discussion when I see him in a few weeks! Lemongrove, thanks for all the info, you’re obviously a mind of information. I have been to the Marsden for a second opinion as Oxford Neurosurgeons declared my meningeal met unsuitable for any surgery. I thought that was rather rude but the Marsden Neurosurgeons and Cyberknife people agreed that it was of a size and in a location that was inoperable plus would probably leave me a vegetable. They thought that my onc’s plan was excellent and suggested I go along with it, but they are suggesting Cabecitabine hooray! Thanks again though.
Hi Tina, I appreciate that your meningeal metastases are inoperable, and that you require chemo to shrink them down, but the reason I suggested Cyberknife is that it could destroy the tumour permanently without causing brain damage.
Although Cyberknife has the word knife in it, it is not a surgical procedure, but a super precise form of radiotherapy. Having said that it could cause swelling of the menanges, but they could give steroids to reduce this.
It’s your decision completely, just thought you should know, as it might be an option.
Hi Tina - hope you are getting your treatment plan sorted out; not easy with so many decisions. You seem to clearly prefer for have Capecitabine rather than FEC - and I hope it works well for you; I had FEC and although it’s a very strong chemo it worked better for me than Capcitabine and the side-effects were manageable whereas the foot syndrome that I got with Capcitabine really restricted me as it was very painful to walk. My Onc sees FEC as chemo of his first choice for me and then has used others afterwards - thinking of you as you make your decisions.
Lemongrove has mentioned Cyberknife as a new type of radiotherapy - my hospital has just installed Tomotherapy which is another new type of radiotherapy that it’s using with head and neck tumours in particular; I don’t know if it would help you but thought I would mention if in case you have not heard of it.
Sorry Lemongrove, my mistake for being a lazy typist. The Marsden and Oxford neurosurgeons declared my tumour inoperable. Both the Marsden Gammaknife and stereotactic surgery teams had long discussions but agreed neither treatment would be suitable. My oncologist would have supported any of these and is trying to do his best for me with radiotherapy. I’m kind of lucky in that I’m a health professional myself so not afraid to challenge decisions. Onto the chemo decisions I guess! Frances, thanks for sharing that, always amazing how chemos are so different for everyone. Tina xx
So sorry to hear your cancer has spread, i am a newbie only registered yesterday, and hoping some-one will get back to me regarding my comments.
I was diagnosed with breast cancer and bone mets all at the same time, apparently had cancer for 4yrs but didn’t know, i have it in my skull, pelvic bone, hip, and spine, what a double whammy!
So i can empathise a little with you, my heart goes out to you.
Hi alma, I just sent you a private message. You will find it if you click on your name and go to your profile. I was also diagnosed in the same way. 8 years ago…hope my message will be helpful.
Hi
I am new to this site too. I have secondary breast cancer (diagnosed a year ago) and am looking into chemo sensitivity testing where you are tested to see what works on your particular cancer. They test for chemo drugs and also natural alternatives so the right drugs are used to prevent you having drugs that are not going to work for you. This is how I understand it.
You have to pay for it privately but the results are sent to your onc in the hope they take on board the results. You can choose to pay for the natural alternatives. Has anyone elso gone down this route?
I would be interested to hear about others experiances.
How awful to have it come back and in such a dramatic way. It’s what we ALL dread and I can’t imagine how that must feel for you.