I have mets in my liver and lungs, I was interested to find out if any of you have opted or had available to them options not available to them on the NHS and how the worked out for you. Whether it is part of you private health care or if you have paid for the treatment here or abroad. I have read in the past a few of you going abroad etc, would be very interested in any comments you have.
I’m not clutching at straws, I know what my outcome is going to be. I simply want to be here for as long as possible for my 2 girls aged 10 and 7 and want to know I have done everything possible to ensure that. I also understand if you are at an age in your life where you kids are grown up it won’t make it any easier because what ever the reason there is always a future that we all want to be in for one reason or another.
I have private health insurance and am currently receiving Lapatinib which I don’t think I would be able to have in the NHS unless it was part of a trial. I have brain and liver mets and at the moment Lapatinib and Capecitabine seem to be working well. I don’t know if you’re HER2 positive but maybe Lapatinib is something to think about if you are.
I understand how you feel, needing to be sure sure you’ve explored every available opportunity.
I’m being treated in France and so far, everything that I’ve had corresponds very closely with what seems to be available in the UK, with the exception of the Avastin (now suspended in my case due to high BP; I’m hoping for a reinstatement), which seems to be delivered without any special conditions or restrictions being imposed.
I did read recently about something new in the radiotherapy line coming to Toulouse, which is about an hour away from where I live. I will dig out the info’ and repost asap.
Thanks for you comments, I should have said I am triple negative so chemo/things like avastin are my only options - I don’t get a break because of this but haven’t done too bad since diagnosed with secondarues in Feb 2008.
I have a clinic appointment tomorrow so you will all know what that’s like! results of the ct.
I’ve had a bit of pain in my liver, the onc had a feel and didn’t seem to concerned but it is definately playing on at the back of my mind. I am due to go on holiday on Thursday and am spending the time convincing myself that no matter what the outcome of the results are that it is not going to ruin my holiday but it’s easier said that done eh. I keep saying to myself no matter what the outcome is it won’t change anything so I better just go and enjoy myself and deal with it when I come back. Anyway fingers crossed
I have private medical insurance through my husband’s work - had Avastin when 1st diagnosed 2 years ago, when it was quite difficult to get hold of. Also, this July, have had SIRT for my liver mets which appears to have worked well although it is still early days. I don’t think this is available on the NHS at all - the insurance co needed some persuading as well!
Hi Diane,
I don’t have private cover but have you asked about vinerolbine and also caelyx?
Thinking of you and hope they can mention other treatments for you.
Love Debsxxx
I dob’t have private cover either, however friends and family have fundraised a substantial amount of money in case I need it, if not it will go tp help cancer patients increase their quality of life etc. It was really your story Debs when I was first diagnosed with secondaries that drove the fundraising. Your fight for avastin made me realise that I could need some serious cash, I’m really glad that you got it and your trust paid for it but different trusts in different parts of the country could have had a very different outcome.
I’ve just googled SIRT, I did about it just didn’t know the abreviated word for it. I might ask about it today, Jayne were you knocked out and how long did you stay in hospital. Also I am assuming that this procedure can be carried out in the UK.
Fingers crossed for you for those CT scan results. I have a boy on 10 and girl of 7. I’ve had bone secondaries since Jan 2007 and recently diagnosed with lung mets, so we have some things in common. As you say, to get this diagnosis at any age is equally truly devastating, but when you have children of our ages, it’s the first thing you think about. Like you, we are aiming to go on holiday shortly, although I haven’t booked anything yet because it feels like tempting fate. I have private healthcare through my husbands work and will shortly be starting Lapinatab which my onc said if private healthcare won’t agree to pay then he will get it for me under a clinical trial, so I think there are ways that our oncologists can get us the drugs we need even if they aren’t available on the NHS.
I still can’t find the exact article (but I’m still looking), but I’ve done some googling (using ‘Toulouse + IGRT + radiotherapy + respiration + tumour’) from what I can remeber about it and I think the technique is called ‘IGRT’ (Image Guided Radiotherapy). This treatment seems to be available at the Beatson West of Scotland Cancer Centre
I seem to recall the article that I can’t find mentioned that one of the chief advances was that it could be used on hitherto unirradiatable tumours because it responded and allowed for the tiny movements caused by breathing, etc.
It was me who had the SIRT not Jayne. Had it done in June/July in Guildford - not sure how many hospitals are able to carry it out in the UK but certainly some. I went in twice - once to have 20 plus coils inserted to block off key blood vessels. That was a very long procedure and I was awake throughout (not even a sedative). Had to be flat on my back for 9 - 10 hours (last couple of hours could have a pillow under my head and the bed raised a bit). Stayed overnight (so they could check there was no bleeding etc from the artery).
Then went in again 2 weeks later for stage 2. This time had to go in the night before and stayed for another night afterwards. Again quite a long procedure and awake throughout - he had to put in a few more coils, then inject the spheres and then a nuclear scan and CT.
Scan results at 6 weeks were described as “very encouraging” - dead tissue in the area around all the liver tumours. Am waiting for blood test results now - get them next week.
Hope that is helpful - let me know if you’d like any more info.
I take it that the procedure requires you to be awake and that being knocked out isn’t an option.
Also does it depend on the size of your tumours, some of the stuff I have read would suggest this others don’t seem to mention that.
Any info you have would be helpful, where did you get it done in Guildford was it a private hospital. I am trying to speak to a good specialist that may be able to recommend a dr in scotland.
Yes - awake because you have to hold your breath whilst they do the angiograms (multiple ones are done to ensure the coils are in the right place). Evidently they do sedate people sometimes but obviously it takes longer then as they have to rouse you each time.
I was not told that size of tumours mattered - they do for RFA but not for SIRT. What does matter is that you have reasonable liver function because clearly you are zapping the liver big time and there is a risk if the liver isn’t functioning well, that the liver will start failing after the treatment.
I had it done at the Royal Surrey Hospital in Guildford which is NHS (though I was a private patient there). There are 2 private hospitals in Guildford but they didn’t have the correct facilities. Your best bet would be to seek a referral to a liver oncologist or surgeon (rather than breast) as they are far more aware of this sort of treatment. SIRTEX have their own web page - you could always give them a ring to ask who is licensed to carry out the treatment in Scotland.
I finally got to the bottom of my memory and discovered that what I had read about was the ‘Cyberknife’.
As I understand it, it has a lot in common with the Gamma Knife, but its use is not restricted to the brain, so it can be used in tumours in other parts of the body as well.
I think there are three in France, including one in Toulouse.
Thanks for all your comments, unfortunately i am not suitable for SIRT as my tumours is too big. I have been to the leonardo Klinic in clinic - it isn’t bad actually, it took less that 6 hours from door to door.
They are carrying out chemo sensitive test on my blood to give me a plan of what chemos will work better than others. They also carry out lots of foods on my actual chemo to determine if certain foods make it grow quicker that others etc. Then it will be back here to think through a plan with my onc - who seems to be behind me on this one at the moment.