My understanding is that LInac stands for linear accelerator. It is the kind of machine that is in most hospitals and provides most of the radiotherapy to patients. Some of these machines (?all) are also able to provide stereotactic radiotherapy which is what you are talking about…I suspect this is not quite as precise as the Gamma knife etc which adapts for breathing stc…but this is not so important (I think) for cerebral radiotherapy because head will be completely immobilised (and doesn’t move with breathing!)
Herbgarden (Pam), you’re right that most hospitals have Linear Accelerators, but to be used stereotactically, these machines have to have what is called a multi-gated facility (in fact all stereotactic RT machines are a form of Linear Accelerator).
I’m not sure whether Linac is any less precise than Gamma-knife or Cyberknife - but would be interested to know. I know that Gamma-knife is considered to be the gold standard for brain mets, but am not sure why, as it does not have a tracking facliity (it’s Cyberknife that has the tracking facility). In any case, as the brain doesn’t move around, and the head is immobilised by a frame (as you mention Pam) , I doubt the tracking facility of Cyberknife would significantly increase precision. Basically, I think as far as brain mets are concerned it doesn’t matter what type of stereotactic RT is used. I feel the main advantage stereotactic RT (whether that be Gamma-knife, Cyberknife, Linac or modified TomoTherapy), is that it treats mets and spares healthy tissue, and that treatment can be repeated.
Jane I’m glad you have some food for thought, and hope this helps you to have a productive meeting with your medics. The only thing I would add to what I said earlier, is that if your mets are multiplying quickly, then yes, it might be better to have WBRT first followed by Stereotactic (if the mets start to regrow). The thing is there is little point treating eight mets, if another eight rapidly pop-up. The thing is that while you could have several sessions of stereotactic RT, to tret subsequentl mets, there is ultimately a limit to how much radiation the brain can take.
Thanks for that info Lemongrove. I guess its useful for people to know there is not necessarily any advantage to push for treatment not available widely ( certainly not in Wales) when stereotactic radiotherapy from linacs which have appropriate systems, is available more widely and can be equally effective for a small no of small brain mets.
Hello everone (and especially Lemongrove).
I wanted to update you on the situation as it appears there is a moral to the story which is. Always research, question and discuss with your consultants and express your fears!
Armed with my own research and Lemongrove’s input I was able to voice my concerns with my consultants, mainly:
- Deterioration of cognition as I am a head type, with Maths degree, Postgrad diploma in Art History and MA in Film and TV, and a career in charity management where a lot of working memory (which uses a lot of short term which is hit by WBRT) is required. I envisaged in the future that if I deteriorated physically I could still do research/read etc.
- Hair Loss. Obviously this is a fear for most women with WBRT as it can be permanent, or hair can grow back thin. I was particualrly worried about this as I am heterosexual and only 47 and without a long term partner who I could reasonably expect to support me whatever my appearance (e.g. we had been together for twenty years and had several children together) and I had already had difficulties when undergoing chemo, with a boyfriend who admitted that he found my loss of hair upsetting as it was a constant reminder to him (and me) that I was sick and had cancer. Some may argue that he was a wuss and I am better off without him - but we did get together after my diagnosis and it is a lot to take on emotionally for a “new” partner.
Anyway, the point is that - my consultant was great, listened, and although they considered WBRT was the optimum treatment plan medically - it was not hugely more beneficial than delaying WBRT for a few months, trying gammaknife first and seeing how things went and then doing WBRT if my tumours were still multiplying at that stage i.e. factoring my concerns and quality of life in, they were happy to try gammaknife first.
So thank you for the support here. To use the old expression “If you don’t ask you don’t get”.
Best
J
P.S. - I don’t want to upset anyone, I currently have a boyfriend who thought (and thinks) the wigs are fun when I lost my hair - and sports a clean shaven head himself!
J
P.S. - I don’t want to upset anyone, I currently have a boyfriend who thought (and thinks) the wigs are fun when I lost my hair - and sports a clean shaven head himself!
J
Jane thank you for your kind comments - I’m really pleased that the info was of use.
As you have now made the decision to have stereotactic, there are a couple of points I would add.
(1) Because stereotactic is much more precise than conventional RT, it can be used at a much higher dose than conventional RT . The advantage of a higher dose is that the mets are less likely to come back (for example, I had another type of stereotactic RT called Cyberknife for skull mets back in 2010, and they still have not comeback). Consequently, it might be a good idea to make sure prior to treatment that they are going to attempt what is known as a potentially curative dose, rather than a palliative dose.
(2) Most PCT’s/Commissioning Grooups fund Gamma-knife for brain mets these days, but if your docs encounter any difficulties, don’t forget there is another form of stereotactic RT that your hospital may have already (Linac), so it’s worth enquiring. There is also Cyberknife and TomoTherapy, but these are not widely available, and funding isn’t readily available as yet.
Good luck with your treatment, and stay in touch.
lemongrove are you having Rad at charing cross? How far in are you? My first week out of 4 was last week and there seemed to be lots of delays caused by machines breaking down - does that happen a lot?
lemongrove are you having Rad at charing cross? How far in are you? My first week out of 4 was last week and there seemed to be lots of delays caused by machines breaking down - does that happen a lot?
Mazg I’m not having RT at the moment, They started me on Lapatanib and Capecitabine six weeks ago, and are doing regular MRI’s to monitor the outcome. Apparently it takes about six weeks for Lapatanib to kick in.
What sort of rads are you having at Charing X? Hope it hasn’t inconvenienced you too much. I know they have several conventional RT machines, and when I had conventional rads in 2010, they frequently seemed to have one out of commission. Hopefully if I do have stereotactic RT the Linac machine will be OK.
Even though I have read the posts on this forum since the start I never ever thought or wanted to be in the position of needing this info for myself ( does anyone?).
Sadly, I have been suffering from symptoms that gave me a horrible gut feeling and mentioned it to my onc on Tuesday-was booked in for a brain scan there and then and she phoned me in the afternoon with the news that I have a brain met. Gutted! Because of its location the surgeons will discuss on Tuesday if surgery is possible or if not, then WBR. When I mentioned stereotactic radiotherapy to the onc she was concerned that if only this one area is treated then there is always the chance of it recurring in another part. I am currently on my second cycle of capecitabine and she is applying for funding for lapatanib. I am also on herceptin and Zometa but I think these are being stopped and I may have denosumab instead so that my veins can have a rest.
I am now coming to terms with this and can talk about it without breaking down but I still sometimes feel that I am walking a tightrope with my emotions although I think I will feel better once I know what my treatment plan is but, thanks to the postings on here, I can at least go armed with valid information and achieve the best possible treatment for me.
Liz x
Hi… I am 1 week post my 10 session whole brain radio. I just want people to know that its nothing to be scared of. I love the fact that they are treating the whole brain (saves them missing anything!). My main concern was sickness but to my surprise i didn’t even open the seal on the anti sickness tabs! The steriods give me lots of energy (sometimes to much) which is good because i have a 6 year old. I have 4 new hairstyles in various colours that i can match to any outfit/mood i feel that day. Now i am playing the waiting game, waiting for all my annoying symptoms to go away so i can get on with my life (and get the gym because i have been eating like a race horse (the steroids ;0) )…
good luck to you all. I hope my lol addition helps xxxx
Hi Liz
So sorry to hear about the brain met. What symptoms did you have that made you suspect? It is a worry for all of us with secondaries but ti does look like there’s more treatment options out there than a few years ago. Good luck on Tuesday with your appointment, hope they comee up with a really do-able but aggressive plan. Hoping you can have some good times over the weekend but it’s so difficult when you’re faced with yet another hurdle.
Nicky x
Nanniespike. I’m in the same position as you, and have been taking Lapatanib and Capecitabine for ahout seven weeks now. Lap takes about two months to kick in, so I am having an MRI on the 25th March to see if it’s had any effect on the brain mets.
If the brain mets have grown I’m going to have Linac stereotactic RT, but if they have shrunk or remained the same I will stay on Lap/Cap and have regualr scans to monitor things.
Yes, it’s true that by having stereotactic rads, more brain mets could pop up, But if more pop up, I will have more stereotactic rads. The beauty of stereotactic RT is that it is so precise, and sparing of healthy tissue that it can be used two or three times on the same area.
I have decided that I want to keep WBRT in reserve, because it can only be used once. Also as my brain mets are not producing any symptoms or causing any problems it makes no sense to me, to have a treatment that will probably give me nasty side effects. the fact is, if I had WBRT I would lose my hair, possibly put on weight due to steroid use (because patients often have to take steroids with WBRT to prevent brain swelling), and I would possibly lose some cognitive function.
The other reaon that I don’t want to have WBRT at the moment is that I know most people with brain mets actually die of their systemic disease, rather than brain mets. As someone with limited systemic disease (I went straight from bone mets to brain mets), I feel control of my systemic disease is as important as the control of my brain mets. That being the case, I want to ensure that I remain eligible for any new treatments that could help (and my Prof has said there is a new generation of Herceptin currently being trialled that I could try).
The Professor who treats me seems to think that the Lapatanib/Capecitabine combo, with stereotactic RT, and the possibility of new generation Herceptin will keep me going for at least another two years. I tend to believe him, because there is another patient at my Hospital who has been living with brain mets for three years, and is still going strong. So the message is, don’t lose hope. If we can keep going for three years, by spinning out treatments, and being open to new ones, we may find that scientistss may have come up with something else to keep us going for another three years.
If ever you feel down or want to discuss something with someone in the same boat, please feel free to pm me.
LG
Thank you ladies for your replies. In such a lonely illness it’s comforting to know that I am not alone.
Nicky - my symptoms started off as headaches but then progressed to a terrible pressure pain on one side of the head. It felt like somebody was inflating a lead balloon inside my head and then it hit the skull causing terrible pain for 10-20 seconds then deflated again and this kept happening over a 24 hour period. When this happened we were away with friends at a Warner break and even though my OH wanted to take me to the hospital where we were I refused to go as I didn’t want to spoil the holiday! When we returned I still kept having bad headaches but I started taking capecitabine and, touch wood, have been relieved of any pain. My onc thinks that the cape has helped this - good job as I now have the burning hands and feet to cope with instead!
Lemongrove - thanks for info. It makes sense to keep the WBRT in reserve when the mets are not causing any discomfort. I have not had any symptoms now for nearly two weeks which could be the result of taking cape. A lot hinges on my MRI scan and if there is just the one met for which surgery is possible, then that may be the way for me. At the moment, all things considered, I feel quite well and my onc has said that hope is still a very strong word in my vocabulary. As you so rightly point out there are new treatments all the time and I know that as soon as I’m out of this waiting room and I know exactly what my next battle is then I will find the strength once again to fight these little blighters!
Liz x
Nanniespike, my understanding is that Cap on it’s own does not cross the blood brain barrier. Apparently is is the combo of Lapatanib and Cap that can cross the blood brain barrier, and that’s why I’m now on these two drugs.
Hi,
i have just read this full thread, and would have found it helpful before my WBRT. My brain mets were found in August of last year and my oncologist recommended WBRT. I didn’t question it, and assumed it would be like my other radiotherapy - it wasn’t. I had 10 treatments. During treatment I found my head getting very “buzzy” - a bit like jet lag. I was also on steroids (Dexamethazone), which made me swell up - particularly my face, feet and tummy. I stopped the steroids in December but still have some swelling. I also put on weight as the steroids give you an appetite, so I am now trying to lose that!
With the WBRT, I did lose my hair. It is growing back now, but very slowly. The main side effect I am finding is my short term memory is not as good as it was - my BF will tell me things and I completely forget them! I just use lists and my diary. I don’t forget everything though - it is not bad.
The first MRI after the treatment showed it had been very effective, reducing all of the tumours, so overall I am pleased I went ahead with it.
The only thing I would change is that I would maybe have done a bit more research so that I would know what to expect. It all happened quite quickly - I had my appointment with the oncologist, and was then straight down into planning for the treatment - though I did delay the start as we had some expensive festival tickets and i didn’t want them to be wasted with me being ill. the delay was only about a week. Saying that, I have a lot of faith in my oncologist and I am sure I would still have gone ahead with the treatment.
I hope this may help someone. I also have mets in my liver, bones and lung with the liver just starting to grow again, so I have just started on Capcitebine for that - I am on the third cycle. However, my oncologist is confident that my aim to return to work is feasible which, for me, makes the side effects all worthwhile 
I will continue to follow this thread, as I am sure it will be useful if the brain mets return.
Good luck and best wishes to you all
Nicky (Opal)
xx
Opal/Nicky I’m really pleased that WBRT has shrunk your brain mets. It could be that the reason your Oncologist didn’t mention stereotactic RT is that you had too many brain mets, and they were too dispersed. In any case even though you have had WBRT, you could still have stereotactic RT if any of your mets come back, as this type of RT can be used on previously treated areas.
I/my medical team have made the decision for me to have stereotactic RT first, because I only have a few mets, and as I am currently asymtomatic, there is no point in having a treatment (WBRT), that would cause the SE’s you mention.
Keep in touch and let us know how it’s going. I suspect there are a growing number with brain mets (as there is some evidence that about 40% of those with HER2 + secondary BC eventually develop brain mets - because mets take refuge in the brain where Herceptin cannot reach them), and so this thread may prove useful for others.
Hi Broomsticklady
I have attempted to make the thread ‘sticky’ so let’s hope it has worked
Best wishes
Lucy
Jane 2013. Jut wondered if there is any news?