Please allow me to introduce my wife and her history:
Diagnosed primary and secondary, “multiple small lung mets” October 2009, aged 32, 4 year old daughter. Mx March 2010 and nodes removal, 14/15 affected, 8.5 cm primary tumour (in words: eight point five centimetres).
Oct 2009-Mar 2010 doxetaxel, Herception and (almost certainly) pertuzumab as part of a trial here in Germany - no real effect.
Mar 2010-present Tamoxifen, Zoladex and Herceptin
Scan last week - NED
She’s not at home at the moment because she’s rehearsing Vivaldi’s and Piazolla’s Four Seasons for a concert in September. Right now her big worry is that she’s going to be asked to play the violin solo! (She could do and she’s been practising, just in case!)
Long may this continue!
However, I would like to comment on a remark I saw here some time ago. One lady said she would like to blast cancer into the atmosphere. I think this approach is far too conservative. Cancer has got a constellation named after it and in my opinion it should eff off back there forever and leave us all alone…
Hi CharlieRay, thank you, SO much, for sharing your good news.
What wonderful scan results for your wife, for you all.
I so hope your wife gets to play the violin solo.
With you on the constellation departure!
Inspirational ! So pleased for you. I’m going to piggy back onto your story and take it as a lucky sign for me, if you don’t mind.
This may sound odd…My 6 year old son loves The Four Seasons and is very excited when it comes on the radio when we’re driving. It’s also on my ipod which I can plug in too. Yesterday we tuned in to radio 3 and I missed which orchestra was playing it, but he noticed immediately that the sound was very different - I’m not musical but I think there were some violas involved which gave the piece a very different timbre. He has been talking about this ever since !
I was dx just over a year ago. 6cm lobular. Chemo to shrink lump, them mx and full aux clearance early this year (16-18 nodes affected which terrified me). Also rads as had skin sparing mx, and because team wanted to zap supra clavicular area too just in case. Final reconstruction last month.
Now feeling well and hope to be around for a long time yet- my 4 children and lovely husband are a great incentive.
Hope all goes well for you and your wife. Please update us about the concert.
hiya charlie
dam thats good news it bought a lump too my throat, yipeeeeeeeeeeeeeeeeeeeeeee, there is some good that comes from this crap, it can kickus about all it likes but we are all sure as hell it wont kick us down with what ever drugs we try in the end we will kill this worthless scummy desiese once and for all one day, best of luck too you both,
wayne everyday pass is one closer too a cure
Hiya Charlieray,
Fantastic posting, it gives everyone in the same situation a much needed boost. Thanks for sharing!!
Good luck for the concert, enjoy!!
Thank you so much for your kind answers! The first rehearsal was in summer and now they’re really going for it.
The concert is this coming Sunday, 26 September. From what we’ve heard so far it has almost sold out. Not, I hasten to add, because of Sofie, but because the conductor has finally twigged that they need a bit of “box office” to get the punters in here in the German provinces! So, we’ve got Vivaldi’s Four Seasons, which EVERYONE on this site has heard, whether they’re aware of it or not.
But the Piazolla is perhaps the most interesting piece. It’s Argentinian tango music, full of fire and life, with a German solist on the bandodeon (accordeon) called Lothar Hensel. Of course, I’ve heard the practice CD etc and this is fantastic music. Unfortunately, I’ve got to stay at home on Sunday evening and look after the future Crown Princess of Denmark (that’s another story…)
A weird BC related fact - Sofie’s surgeon/oncologist (one and the same person - very interesting holistic practice idea here in Stuttgart) and physio after the mx said that playing the violin is ideal for avoiding lymphoedema! Not something open to everyone, of course!
Best of luck for the concert tomorrow. I’m sure it’ll go great, and Four Seasons is my favourite classical music ever. Went to see it at Royal Albert Hall in London las year and it was magic, the musicians were dressed in costume and the whole thing was in candlelight, breathtaking. It’s interesting about violin helping lymph, anything that helps is a bonus! Take care, Pat
I am so pleased to hear your wonderful news and thank your for sharing it with us. You must be so proud of your talented wife, I hope she plays the solo. Inspiring news and I am so happy for you both.
I also agree with your sentiments about the constellation.
I don´t know if this is the right place to post, but I love the story and thread. It´s the first time I am posting, though I have been a regular visitor to the site since my diagnosis in December 2009. It´s also interesting to hear from someone else not resident in the UK, I live in Spain, and am being treated here. At first diagnosis, a large lump in right breast, not sure of dimensions, but big, I wanted more than anything an operation, mastectomy or lump removal. But the oncologist I saw recommended chemo first. Being so scared (and alone for diagnosis visit - a big mistake I now think)I went along with what he said. Anyway, since then scans have shown possible liver mets and at my last visit last week he said also bone, which he had not mentioned before. So they are sending me for a bone scan at end of october. I am on Xeloda and Lapatinib, ok except for hand and feet syndrome, and bottom pain.
I am holding on to the prospect that they will operate on me at some point - if they don´t how can I ever get to NED - my greatest hope? The new Onc says he doesn´t completely rule it out, but they are not keen, now it has spread. That doesn´t make much sense to me, so I keep hoping and banging on about operation.
I have a 2 year old son, and I am not in any way considering leaving him anytime soon. Unfortunately this oncologist I last saw was the one I originally saw, who I have since got away from, but who was standing in for the new Onc, and he seems to me a glass half empty person, last thing I need. Instead of telling me that the lump was shrinking, which I know thanks to radiologist who did ecograph, he starts to talk about bone mets, which previously he had said nothing about.
Anyway, I wanted finally to make a comment, as all the comments here have helped me alot, sometimes, at other times they have had the opposite effect, but I like this new thread. I am particularly interested in Scottishlass´s story, and I wanted to ask her if she made any major lifestyle changes when first diagnosed? I have only just now decided that becoming vegetarian would be a good idea. But I am taking every alternative therapy that I can. Does anyone have any comments on this aspect?
Thank you.
The concert went very well and the bandoneon solist said the orchestra understood the Piazolla better than just about anyone else he’s played with. Considering he has played with some top German orchestras this is really high praise. It’s an amateur orchestra, although all the members are professional musicians (teachers, freelance musicians etc.) This has been great for all of us because the first anniversary of confirmation of the Stage IV diagnosis is coming up next Wednesday.
I’d like to follow up on Bess’s post. Last year a retrospective study from the Netherlands indicated that operating on the primary tumour extends life in Stage IV patients. As you probably know, it is possible that chemo will shrink the tumour - in the best case scenario it can disappear altogether. It’s also useful for your oncologists to see what works and what doesn’t. My wife went through 6 months of chemo/trial medicine which didn’t do much to the primary before getting rid of it and the lymph nodes the surgeon could identify. Medical opionion is not, however, united on this point yet, but my wife just wanted to get rid of it and so I think there is a good effect psychologically here. Her breast(s) is(are) small anyway so most of the time she just wears a fairly stiff bra without a prosthesis and nobody notices a thing.
A lot has been written about the subject of diet but there is little hard scientific evidence. The main reason for this is that no one can make any money from running a long term trial that produces conclusive results. It’s one thing proving that a certain new medicine that a pharmaceutical company can then sell works well but how can anyone make any money by saying “cut out dairy products and reduce meat to the minimum”? So there’s no real hard scientific information about this but then there was no hard scientific information about penicillin until Fleming proved it worked! Anecdotally there seems to be a strong indication that cutting out dairy products and greatly reducuing or eliminating red meat in particular from your diet can help. An amazing Autralian lady from the Inspire site (Heather, or "Groovy Girl Cool) provided this link with information about different foods that may help: foodforbreastcancer.com/news.php
Heather is also a huge fan of Dr Aggerwal at M.D. Anderson in Houston, which is probably the best cancer hospital in the world, and he is researching the effects of humble turmeric in combating cancer (they have got a research budget independent of the pharmaceutical companies). This is because there is verifiably less breast cancer in areas of India where large amounts of tumeric is eaten, just as China and Japan, where dairy is much less popular and even absent due to widespread lactose intolerance.
So I would say that there is very strong evidence that lifestyle changes can have a big effect. It’s just that no one can patent a no-dairy diet or turmeric! Please look into the op though!