Downbutnotout has just recently been to Hallwang in Germany also Geidre opened a thread German clinics.
DBNO has written about her visit and has posted in this thread she is also interested in immunotherapy. I think you will find her report very interesting.
All the best xxx
wow thats a very old thread you managed to find! Brought back a few memories....
sorry but I don't know anything about immunotherapy. I've just been reading the other threads and think maybe it's something I need to find out a bit more about.
i had a liver resection in 2012 at the Royal Free, and my liver has been clear since then. Just recently I've had a spread of disease in my abdomen (peritoneum) so I'm back on chemo for that.
hope you get your questions answered and a plan in place very soon
thanks for getting back to me. I have an appointment at Leicester on Monday so will go armed with my list of questions! they don't have much of a track record on BC patients, just 4 so far I think.
Were you able to have the procedure while still taking the tamoxifen? I note on the side effects that you may have to come off it before some operations.
Just ask away all you like!
That's a bummer, that you have new spots. I didn't know they did it in Leicester. I had it done on the NHS and I'm not on any chemo at the moment (herceptin and tamoxifen). I think the criteria were: no spread to other organs, tumours less than 5cm, 1-4 tumours, and generally fit enough for it (esp if a general anaesthetic needed).
In haste - curry's ready!
All the best
Great that this went so well for you and hope that you stay NED for some time. I had a look at some stats in Germany and for them the procedure seems to have good survival benefits.
I have just got a referral to Leicester for initial discussions about RFA, though apparently they won't consider me until the number of mets is stable for 6 months, 2 new small spots appeared on my most recent scan. Did you have your procedure on the NHS or privately and what criteria do they have in London for this. Are you on any chemo at the moment? Sorry lots of questions.
My 3 mets are all small (largest 1.3cm)and I want to explore every avenue as I am 46 with a nine year old son who I would love to see grow up!
Thanks for all your comments everyone. Yes, I'll email you the details, Dawn. Kate, that's brill to hear your liver is NED, and that you're well enough to be back at work - that sounds quite an achievement.
love to all
I have apparently joined your club of Liver NED - consultant told me yesterday :)Although I do have the other ones to still fret over - it was a bit of good news. Long may the Herceptin keep it that way.
Wot fab news for you and am so pleased the operation went well, although you were in discomfort for few days, but bet worth it. I was about to email you to find out how it went. Not been on laptop much recently, busy with poorly children and life really.
It is great news to share wiv us all and give us all hope really i think. I am going to write to the liver surgeon that Kay saw and I saw last year, and ask him to reassess my situation and if anything is available for me. Although maybe I should write to your guys. If you could maybe email their details. I would love to be told NED, and last 2 scans showed no change apparently.
Anyway, hope all you lovely ladies meeting on friday have a fabulous time,and hopefully I will make the next one. Hope the weather holds out for you too.
I'm doing far better than I expected when we last met - pretty symptom free and the side effects of Arimidex have settled down to a bearable level. I'm still working though down to 4 days a week and I have to admit I'm pretty relaxed about it. Fingers crossed that the situation lasts for a while. It sounds as though you've been through the mill recently but I'm glad to hear that you are still at work (as long as that's what you want). Thinking of you.
Hi Jacquie and Barbara.
Im doing ok at the moment - clinic appointment this afternoon.
WBR at Xmas meant that I haven't posted for ages. I still have sight problems due to brain mets but I'm at work - with a few changes and getting out and about.
How are you both?
read this yesterday and thought I had posted.
So glad to hear the procedure went well and that it was not too painful. Long may you stay NED.
So glad to hear it was relatively trouble free. Hope you can make it on Friday it would be nice to touch base again.
Kate - how are things with you? We haven't exchanged messages for a long time, but my presence on these boards tends to be a bit patchy.
love to all
What wonderful news Jacquie I am so pleased that ablation was an option for you and long may you NED continue.
Sorry it's taken me so long to report back on my treatment (2 weeks ago!). I couldn't find the old thread, so here's a new one.....
Well I was referred in November, seen in December, and booked for the beginning of March. I went to University College Hosp, London. They decided I'd need a general anaesthetic (sometimes it's only a local). I went in, hung about a bit, answered lots of questions (they had NO notes of my medical history, so that took a while). I was in a sort of admissions room - not a proper ward. Then the anaesthetist came and asked when I had stopped taking my Warfarin - I said I hadn't! In fact I'd specifically asked if I should. Then she told me they'd lost my blood test for the warfarin levels, and would not be able to proceed without them, so it might be cancelled. Then she mentioned that the surgeon hadn't turned up either!! Eventually all was sorted out and I went in and was put to sleep. The whole thing took a couple of hours, but I think most of that time is spent faffing about with the MRI scanner, having the needles inserted into the exact spot. I can just imagine going in and out of the 'polo mint' every few minutes as they keep repositioning it!
I woke up and was taken to a lovely ward, where i snoozed a bit and wasn't allowed a cup of tea for 2 hours..... but it was a good thing really, as I didn't feel like eating or drinking much. I'd missed the evening meal so by the time I was ravenous, there were only sandwiches available (and I'm wheat intolerant). I could feel a pain in the very spot where i felt it during chemo and often after herceptin (presumably the tumour site), as well as lots of other odd aches and pains in my neck, abdomen and rib cage - I think from bruising, and from being moved around while unconscious. I won't say i had a comfortable night that first night, but the nurses were absolutely wonderful and kept bringing ever stronger and more colourful pain killers! I wasn't in agony - just painful enough to keep waking me up each time I dropped off.
The next morning I went for a repeat scan and the surgeon came and spoke to me and said it all looked very good - they take a margin of healthy tissue around the tumour, and he could see they had hit the right area. I will go back in 2-3 months for another scan.
I came home the day after surgery, with a smallish plaster at the bottom of my right ribs at the front. After a few days curiosity got the better of me and I peeled it off to see two needle holes, that was all! They are still just visible, but so are the cannula holes in my hand...
They gave me tons of paracetamol and codeine phosphate to take home, and that was just about adequate. For the next three days I had to take them all the time, and there were a few moments when I was very uncomfortable in my liver (but then I'm a complete wuss when it comes to pain). Then for the next few days after that the pain was more on and off, so i just took them when needed. It took me longer to get over the anaesthetic than the discomfort - not to mention all the weird dreams i kept having, from the anaesthetic!
So, all in all pretty manageable. The good thing is that they can repeat it if necessary, so long as you have less than 4 or 5 tumours. I would recommend it, as it's wonderful to know I'm currently NED (no evidence of disease).
Any questions, just ask away....
hope you haven't fallen asleep and this was helpful
love Jacquie xx