well my bcn just called i asked for results over phone and there is progression, build up of fluid behind chest wall (moderate)will drain if causing probs and subtle area on hip so prob have bone scan so despite clear scans 12 wks ago it is on the move but lungs and liver and neck ok so far,cant believe only 10 mths since dx of tnbc and constant treatment now this x and of course all the skin nodules to boot
Hi Fairyqueen
Sorry to hear about the progression and build up of fluid on your chest wall, but pleased that it hasn’t progressed to lungs and liver etc.
I hate the fact that things can change so quickly - and not always for the better. Being TN just seems to add to our problems.
I’m only 4 months from DX so behind you in timescales, but I’m fast realising that we’re just a moving target!
You say a bit on the hip - did you know about this or has it just been picked up? Have you had symptoms re fluid on the chest? What happens next for you?
I hope you don’t mind me asking you these questions.
Keep sharing
Linda
x
hi linda, the area on hip wasnt on last two scans same with fluid, have been little breathless but have been before on chemo so dont know if its that,they can drain if it causes probs, but dont you take me as the norm for tn there are ladies doing great on here i have just had crappy 10 mths but you just take care and as with any bc we just need to be vigilant love rachelx you can ask any questions at all any timex
So very sorry to read your news.
I hope you think receiving the phone call was best for you.
(I responded on your other thread.)
Sending you huge hugs and hoping treatment will follow very soon for you. Such a horrid result after waiting…
Wx
yes phone call at home i found better for me thanks welshgirl just hate that waiting room feeling x satrted capecitabine a week ago read bad things about it for tn but thats what onc wants me on and apparently he will apply for funding of carboplatin (not funded in my area) so i just need this chemo to at least hold it back x
Ho Rachel so sorry the progression 
but good that its not in the lungs or liver keep fighting hun, hopefully the treatment will deal with it
sending you a big hug
Mekala x
Hi Rachel been thinkin bout u- knew u were waiting on ct results. So sorry progression has been confirmed but thankful your vitals are clear. Hopefully this will give ur team the kick up the bum your team needs to get u a potentially more effective chemo + fast. Have u heard from the marsden yet? Or about the application for carbo?
Big hugs- u can do this xxx
hi tina my onc phoned today he has looked at avastin to go with xeloda but you have to be 12 months disease free to qualify for it or something like that but he said it wouldnt benefit as its taxane based and docetaxol wasnt any good for me , he has everything ready to send for carboplatin wants me to do 2 rounds of xeloda then he will keep close eye on me and will apply for carbo has to apply to pct first get quick answer and if no he will then apply to the cancer fund but has to approach pct first , he was really good and explained everything, but so scary as pleura lines the lungs but will have to plod on and pray i am the odd tnbc that xeloda helps x
ps, i did write again to prof smith but not yet heard from him !
You must be so frustrated. Everything takes so bl**dy long
I didnt know that about avastin- my onc thinks I would get it through the cancer fund and Im not 12months clear? Also didnt know it was taxane based- thats not good to hear given that like you, my bc was resistant to tax…
Capcetabine can be effective fingers crossed it halts the progression. How are you finding the side effects?
Obviously keeping everything crossed for you 
xx
think what he said was (having rethink)that for trip neg avastin is effective with taxane chemo combo ,sorry my head everywhere but defo point about being disease free ,so will have to trust him on that maybe your prof will say different i really dont know,plus my bloody phone kept cutting off,you have done well for longer than i have though tina but i know youve had rough time maybe avastin would be good for you,i recurred while on tax so not good at all,capecitabine not too bad at all it is very do able but then am in early days and it builds up daily seing oral so will see just keep praying it does something,xxx
edit … just read the funding policy for avastin trip neg and it does state anyone who received taxane based therapy needs to have a 12 mth disease free period after tax finished… bit of a bummer but am sure your prof must have taken this into account so am sure you will be fine …dont worry xxxxx
bump…
Tganks for the funding info Rachel. I’m 12m since tax but defo not 12m disease free. Is that funding policy related to the cancer drugs fund? Seeing my onc in a few wks so will have a chat with her. Will prob get scanned at some point in august too.
Have u had brca1/2 testing? Have u discussed parp trials??? I tested negative but prof smith told me earlier this yr that they were planning a parp trial for brca- patients. Think I will contact them for an update after my hol next wk
xx
i think you will get avastin,to be honest tina i want to be tested but so scared as my mom died at 47 but we never knew origin of her cancer (25 yrs ago)so am sure i carry gene and so scared for my daughters and sister but then if i carry it doesnt mean they will, just something i meant to do but dont seem to have had time to breaths since dx but will ask about it you take care love rachel xxx
Dear Rachel
I am sorry to hear you have progression but hpefully the chemo can reverse it again as caught early.
I had a scan today and am very worried about results as like you mine was clear on scan and 6 weeks later everywhere in organs, nodes, bone. i am waiting to see if the paclitaxol working.
I had gene testing this week and takes 8 weeks. I have boys but can be carried through them ane one of the BRCA genes has implications for boys. I wanted to know and they can then decide when older if I am positive, also think for parps useful to know. I take it I have what I have and cannot change it but still got upset as just wish as we all do that I had a mammogram and caught it early.
I am thinking of second op too but do not know who is good to see and very experienced at TNBC. Ive heard of Prof. at RMarsden , but not sure of any others in london as think Tina in liverpool ? sorry if wrong tina as get in such a muddle.
Not sure if capecitabine and gemcapcitabine ? same or can have both. I heard of someone on for 18 months and tolerating well.
Has anyone seem any complementary / Alt doctors as want to but dont want to waste my money and they all think BC is hormone related.
Love to you all
jo x
hi jo , it is certainly a monster i am sorry your scan had shown progression it is so elating to have a clear one but with tnbc we all know that can change in a blink, how long have you been on your chemo?when do you get scanned again ? i hope its great results for you , i too think of going for 2nd opinion but went down this route with my hubby when he was ill got him to leading prof in birmingham for brain tumours i dont think it really did anything but gave us temporary hope(and accesss to ane extra chemo drug that helped for 6 months) but that was some years ago now and london so much further and so tiring to travel but if needs must i will,for my kids sake you take care and chase up the metformin i am going to try… hugs rachel xxx
How are you Rachel? X