i spoke to the woman at the Scottish breast Cancer Campaign and she gave me her book from a huge conference held in berlin this year - there is a couple of Doctors, one of which is in London that are experts in triple negative breast cancer.
I am working at the moment but when i get home this evening will email you.
I will pm you just now and leave my email address please email me and I will forward you what i've got.
Best of Luck, I can't stop thinking about you
Hope you managed to get some rest so that your head can think straight. Hon, I know the waiting is desperate and you can but try for an earlier appointment. My understanding is that the onc clinics are in Sutton on Tuesdays, or Mondays in Chelsea and the rest of the time the team are in the labs. I met * * at my referral and he ran through my history with him & he examined me, and then * * joined us and we discussed treatment and he answered my 6 page typed list of questions. I think I was there almost two hours in all. I don't think Steve is in this week tho as I had appointment with him on Monday, but saw registrar in his absence. Are you speaking to * secretary?
I requested an immediate transfer to the Marsden as I seriously felt my health was compromised by my team at previous hosp & had lost total faith in their ability (and I told them that!). Long story. I didn't want to hear their treatment plan, I just wanted out.
My family & I were staggered to see the difference in the way the Marsden handled the case - they were in a totally different league of professionalism and compassion too. They weren't patronising or dismissive & addressed my concerns/thoughts seriously. Their responses were backed up by research/studies so I could understand it properly, the speed with which they actioned things, phonecalls on same day from Charlie to give me same day results of scans/tests to put me out of further misery. The secondary breast care nurse is lovely and so knowledgeable too. They were direct with me - no mollycoddling, but I came out the appointment feeling that I was in safe hands and that would do their very best for me. Their aim was to get my final tests done and start chemo immediately, and that's what happened.
Regarding symptoms, my liver was distended and tummy was bloated - couldn't button up my jeans but can't remember my feet (winter time and boots/socks). My bras were uncomfortable too as they seemed to squash my ribcage, so I kept undoing them and letting it all hang out - not a good look. I had lots of reflux and heartburn and hiccups, plus lower and upper back pain which kept me up all night, breathlessness (cos of lung mets).
Keep hanging there. You are doing fantastically given what has just been thrown at you. Try and use this time to compile your list of questions based on all the advice and research you can glean from here and everywhere. You will feel relieved after your appointment if you know you haven't left any stone unturned. It's the best we can do right now.
Thinking of you.
lots of love
P.S PM me if you need. But you will need to make it pretty obvious as I am a virgin to all that whispering stuff.
I totally agree with everyone who has posted above. Cry down the phone if you have to. Let them know just how distressed you are and fingers crossed you will get seen quicker. I am hoping that maybe you are on your way now after being given an appointment this morning.
Hugs we are all thinking about you and your beautiful babies.
Love Jules xxxx
Yes try to see them earlier 'he who shouts loudest gets heard' I can't imagine what you are going through but from our chats and posts on here I know you are a real fighter and that you must take hope from all these other posts. There are loads of treatments out there make sure you get the best, YOU ARE WORTH IT!!!!!.
Lots of love and hugs and good luck today
I dont blame u, get on the phone as soon as poss and see if they have any cancellations or can fit u in. To u, Tuesday must seem years away. Surely if you tell them your situation and explain how stressed, emotional you are they would do an earlier appointment. I do hope so.
I cannot imagine the turmoil you are going through, but you have had some absolutely fantastic advice which I am sure will help u at some point. And I am also sure, that no matter what, your children are bringing a smile to your face.
Keep fighting honey, we are all here, holding your hand, crying with you, smiling with you and hoping against all hope that you get answers and treatments as soon as possible.
Take care and lots of love
Oh Paula , I really feel for you . I know that appt cant come quick enough see what you can do about an earlier appointment .
we are all thinking of you and sending our love x
Thanks Teacup.....I am going to see if Marsden will see me either later today or monday....I see every day that I am not with them this disease is progressing so this morning having many more tears, I just can't leave my babies....my beautiful babies....
Hi Paula, Just catching up with all the posts for you. So much support and advice for you from Lily, Debs and Ripley and all the others. Tuesday can't come fast enough but so good to hear you have started rads. I am thinking about you a lot these past few days. Take care. xxxxx
I dont honestly know what to say that others heven't already your news has touched me more than anything and I do hope that god spare you hunni.
I'm not a religious person but i will be saying a prayer for you tonight.
I have just read this thread and want to send you my love and to let you know that although I haven't prayed for a long time I will be praying for you.
I hope that in this nightmare the wisdom of so many ladies will help and strengthen you.
The Marsden is a terrific hospital - good luck for Tuesday.
Sorry for speaking for dawnhc..I know she can speak for herself...but I am pretty sure that she has not been treated in Germany. Dawn has bone mets and is treated at the Marsden.
Just wanted to let you know that I am thinking of you - and too bloody right about the boxing gloves - fight all the way - kick this C right where it hurts.
Ensure you take a longlist of questions with you Tuesday and a couple of other people to listen and pick up information - for you.
Please take care, love
Forgot to mention that dawnhc who is a member on this site has been to the Leonardis Klinik in Germany, this clinic has a good reputation and I know dawn has just finished treatment in her liver. The treatment involved injecting chemo directly into the liver, I think on 3 or 4 different occasions. This was furthered by laser treatment to zap the mets that were left - I don't know if it's an otion for you but it's worth a shot. My email address is (edited by moderator) if you want to email me I will send you the email address and phone number.
I started reading your thread earlier today and then had to go out. I have thought about you and your family the whole day. When I got home I had visitors, who have just left and finished reading all your responses from all these positive people. As I read it was good to see you turning from someone in complete shock to someone with their boxing gloves on not prepared to give uo - you go for it the brain is a powerful tool!
I too am triple negative, although my kids are a little older age 9 and 6.
I wish you the very best of luck on Tuesday, make sure you have everything written down that you want to ask and don't leave any stone unturned. Sometimes with my onc it's like pulling teeth but I'm learning that this is just the start of a very long relationship (I hope) and she doesn't need to like me she just needs to give me the best possible advice and treat me. If she is offended by all my questions the tuff s**t.
Best of Luck, I'll be thinking of you.
hope all these positive posts are helping you this forum is just incredible.
Tuesday will soon be here and a new treatment plan will swing into action.
What can I say except..thank you thank you thank you......I am worried that tuesday is still far away as I was told this tuesday my bad news.....
I am down to see Dr * * or * * under the care of Dr *.
Did you ask for the referral??? Did your original team not give you any hope?
My tummy is distended and legs/ankles swollen with fluid....my tummy is apparently all liver...can I ask did you get this?
Pls dont apologise for essay...I am armed with further info and more hope..I just hope they dont dismiss me......!!!!
Thank you again.......heaps and good luck with all your further treatment pls keep in touch
Love and hugs
i'm so sadened to hear your news. I too have young children and your fears and tears and with all of us. Good luck for tuesday and be stong for you your hubby and kids.
Paula, I’m really sorry to hear about your living nightmare. I feel your pain. Earlier this year, purely by chance, I was dx with lung & widespread liver mets before a primary dx (IDC), as it didn't show up on any imaging. I am 40 and I just wanted to curl up and die. I had a sharpish referral to the Marsden and have been treated there since.
I know we are all different and bc is such a complex disease. I am not triple neg, but er-/pr- & HER2+++ but I want you to know that I think that the Secondary Breast Cancer team at the Marsden are fantastic. They are human, but they are realistic: they won't claim to offer a miracle cure, but their intention will be to kick the sh** out of the cancer, induce remission, maintain good quality of life, and manage the disease like a chronic illness until current research yields better treatment options for you when required. I am sure they would tell you if they thought there were better options elsewhere.
I warn you, they move pretty fast - my chemo started a week after my initial consultation. They put me on a brand new chemo regime (gulp), TCH, which has had its moments, but with my largest liver tumour 7cm x 7cm reducing to 3cm x 2cm after 6 cycles and liver function back to normal I am absolutely delighted and have some hope! I am having a further two cycles to get a maximum benefit because of the excellent response. I trust the choices they made for me. A family friend's brother is a Professor in Oncology at Harvard University and he confirmed that this was currently the best regime used for my condition in the US. By the way, before my HER2 status was confirmed they told me that if I was triple neg they would start me on Anthracycline based treatment with Doxorubin Cyclophosomide. However this was in March and there may be better options now.
It also comforts me to know that when the team aren't in the clinics, they're in the labs doing research. I have met young women there with diabolical prognoses (from other hospitals, funnily) who have defied the stats & have flicked two fingers at cancers.This happened to one of my friends given 2 months (not BC) who has seen her tumour markers down from 1400 to 57 and incredible reduction in size and she's swimming an hour a day sixteen months later. This is why I have trust in them.
So, hang on in there, girl. I wish you all the best of luck on Tuesday. I know this period of waiting is dire so, if you can, use the time compile a massive list of questions (copies to everyone who goes with you so they can note the answers whilst you listen), mention all the other overseas treatment options mentioned above – they will give you their opinions on their merits in relation to YOUR specific diagnosis. I sincerely wish they can offer you some hope. Apologies for the essay – steroids today!
Replied to you on my other thread will be away on tuesday but will be thinking of you and keeping everything crossed. My kids are 14 and 17 but I would cross hot coals to stay with them
Lots of luck
Hi again Paula,
SIRT may be worth a google, its a radiotherapy treatment for liver mets, I think its just being tried over here, if you have a route around Im sure you'll find the right info, you could even try searching the threads on here too, Im sure Ive read about it on here in the past.
Also I heard Avastin would be made available in july, damn chemobrain cant remember the name of the organisation who sort all this out but am sure other ladies are more knowledgable than me!
Lots of love and luck for tuesday
Lily...we are all worth it aren't we.......!!!
Nope can't hear any singing........right of to bath my tinkers......
Thanks again ladies I am so blessed to have you all......I mean that so much
Hugs and huge kisses to you all...and a large glass of Vino too....
you are so welcome for just an incey bit of my time and a lot of my energy and stubborness to never give up.
But most of all because YOU are worth it.
Chin up and keep battling. That fat lady isn't singing.
Lily x x
Too right Paula, he is one man, there are lots of different specialists out there, and someone will be able to help you.
You are a fighter and your going to fight this and we are all going to be behind you on here. Every single one of us is will support you and give you strength. Remember that on Tuesday, you will be in all of our hearts and we will be willing you on.
The Marsden is a centre of excellence, the best and you will get the best!!
One last comment, do you remember a lady came on last week and she was upset because her mother in law had been told there was nothing they could do for her, and others came on with the same problem and told her differently as they had same problems and been given hope. Some of these doctors think they know it all but they DONT!!
Glad you are feeling more positive today and I hope the radiotherapy gives you some relief. Still thinking about you.
Huge hugs thanks darlings......today I feel like I have hope..yesterday I didn't...I am not giving up when I look at my beautiful kids how can I ...he is one man......he has got it wrong so far...!!!
To Paula, you are very much in my thoughts. Just want to send you more hugs.
And Debsincornwall and Lily, how wonderful that you have done some investigation work in drugs and treatments etc. today. I pray that one of these drugs or treatments will help Paula.
Every single finger and toe is crossed for you Paula.
I've not posted on here yet but have read your post and can't believe the situation you are in. I don't have any advice to give you other than all the recommendations above and to say I'm thinking and praying for you like everyone else.
Take care, good luck at the Marsden and keep fighting - sounds like you are going to 🙂
Lily...you are a star.....people like you give me hope.......and girls thank you for all your support and kindness.....I am NOT GIVING UP....... I have had 1st radiotherapy to vertebrae today and now instead of one they are giving me 5 as I have fluid build up around spinal cord making it hard to walk...but walk I bloody well will.....
Love u all
Paula, I am so very sorry and saddened to hear your news.......I'm glad you are going to the Marsden on Tuesday and really hope someone there can help you.
We're all here fighting with you honey.
Just a suggestion,why not print some of these posts esp Lily's last one and take the print out along or even post a copy fao consultant before the appt.Rooting for you all the way paulaxx
just to tosay that if you know someone with an attitude similar to Lily200 and you are not naturally like that (or up to it) yourself then take them with you .... you need to make a huge stand - good luck love FB xx
been thinking of you all nitr hope you are ok and staying strong hun
love to you and your family hun
really hope that tuesday brings you lots of hope
Just found this thread (am in an internet cafe on holiday) and am devastated for you. I remember you first coming on when dx. i don't really know what to say, other than that I am thinking of you, and hope and pray that you will be offered a chemo that works for you.
have been surfing all afternoon with mixed results. A lot of this is beyond my knowledge as I don't know the different types of liver cancer when they say it is for a specific type. The US site I saw is 'clinicaltrials.gov', if you want to look at that.
In the UK I believe Avastin plus paclitaxel have been found in trial to double survival time but is only being covered by private funding at present, not on the NHS. They have been pleased with the results.
Leicester Royal are working on vinorelbine and cisplatin as a treatment.
The Lancet (docs mag in UK) had an article about using chemoembolization, which uses doxorubicin to block the blood flow to liver tumours.
The Us seem definitely way ahead of us on this one, with work being done in a number of big cancer hospitals across the states. The Jeffersons Kimmel centre in Philadelphia is looking at/using radiation emitting beads, the process is called radioembolization. Article on www.sciencedaily.com.
There was also a trial using Nexavar (sorafenib) tablets which closed early because the results were so good and all the patients were put onto it straight away, but it is for certain types of liver cancer. It is currently approved in Uk for advanced kidney cancer and being evaluated for breast. So there may be a trial somewhere.
I hope even a crumb of this may give you strength to keep battling. I think they decide whether to try you on something from how determined and how much you push. Drop a picture of your babies on his desk and say this is why I will try anything.
Hope I have not been too aggressive with my suggestions but I think you are fighting for more than yourself in this battle.
All the luck in the world
Lily x x
Dr de Bono was on the news yesterday talking about the new drug for prostrate cancer so it might be worth seeing him.
I'm so pleased you've got your appointment at the Marsden and have had some help from Debsincornwall. It's good to be going there with some ideas.
And good for you for keeping on fighting! Clearly we're all behind you and supporting you. The Marsden has to be better than Brighton - your experiences have really made me think!
I'm glad you have your family and good friends around you to give you day to day support.
Thinking of you all the time!
good for you out there with your boxing gloves on giving it your best. I feel that the loudest voice gets heard and noticed at a time like this and quieter voices are ignored more easily.So you go out there and get what you deserve, the very best, any option, any avenue available. If you find a drug go straight to the newspapers, MP shout for it.
I have no knowledge of exactly what the drug is most used for, the lady in the book had ignored a huge tumour for a long time and it was 7 cm and was having recurrences through her masectomy scar plus other problems. She was on herceptin and Omnitarg. She also had Tykerb (Lapatinib) and then 17AAG. But the 17AAg was altered because it made all the patients smell so the new version was called 17 Dmeg, by a specialist at the Royal Marsdencalled Dr de Bono. A lot of the drugs are on the experimental level and in this country would probably only be released through a trial but in USA it is different, not sure about France. I hope this is of some use, please bear in mind they did not specifically mention the liver but it might be an even better area for trials. I will try to do some research too and get back with anything I find asap.Have tried to wrack my stupid chemo brain too help but had a dose on Tues and not at my best. Sorry
I can only echo everything everyone else has said. Here's hoping for a positive discussion at the Marsden next week. They really are fantastic there and I so hope they can come up with something for you.
All positive thoughts winging their way to you.
Paula - just caught up with this thread. My heart goes out to you and your family. You go armed with all the info from the ladies on here with regards to drugs etc. I am sure the Marsden will do everything possible for you.
Be thinking of you.
Big hugs and much love
Paula, thinking of you and your family also. What a horrendous situation to be in. Here's to the Marsden helping you !!!!!
Sending you love and best wishes
I would also like to send lots of love to you and your family and sincerely hope Marsden will come up trumps for you.
Good Luck with your appointment on Tuesday, I am sure they will offer everything they can, I know you are strong and you can fight this, you have been such a help to me you deserve all the help you can get.
Lots of love and hugs to you and all your family
Just to echo all the other messages, I am thinking of you and hope The Marsden can give you some other
Just wanted to add my hugs to the circle of your cyber friends, and let you know that I have been thinking of you ever since I read your first post on this thread and wishing you well. So glad you got quick appt and lots of support coming from all over, and info that you can ask about at your appt.
Let us know how you get on
I have been following this thread and may I add that I pray for you peace, strength (and the willingness to receive support from others at this frightening time), and an encouraging consultation at the Marsden, a centre of excellence for us secondary bc folk... and for a treatment plan that includes plenty of hope.
Thinking of you and your family and sending prayers that the Marsden can offer you some hope, cos your onc not does seem to have done. Glad you got some people coming to support you at this time and I agree, dont BLOODY GIVE UP!!Take care,
Just letting you know that I am so sorry that you are going through this terrible nightmare and that I will be thinking of you and praying for you and your family that the Marsden have some answers for you.
Thank you again ladies....I am holding onto you all and feeling that support and love.
Lily200....do you have any more infor on that drug in USA..I tried to google it but nothing. If you have anything else that may help please can you let me know so I can research and go with it in my hand along with Avastin info.
I had half a sleeping tab that helped and have woken up at 5.30 as my mind is racing with all plans I must do and get in place just in case. My MIL is coming over from Oz on Saturday to stay indefinately for time being. My sisters are arriving and some brilliant friends too. NOT that I am GIVING UP COS I AM NOT....................!! NOT BLODY YET !! Excuse language.
Thank you from the deepest part of my heart ladies.......xxxxxxxxxxxxxx