Hi Linda and all!
Sorry to heat your news re:results - it is so upsetting, isn’t it. I had something similar while on taxol (alone) last summer. I then had rads to the area and that seemed to take care of things - 9 months and holding! Really hope you can have rads or a change of chemo. perhaps. Good luck for your app. next week. Good luck too to all on here - those memory books sound lovely, Jo. Hope your son had a great performance of Oliver, Sadie - it’s a lovely musical, though the film version is rather “dark” in parts. Mind you, I’m easily frightened - I was terrified of the goblins in “The Hobbit” when I read it as an adult! Good luck to your star! Hope all goes well on Monday, fairyqueen.
All the best, Sarah x
Hi All,
I am officially joining your group! Got the news today that I have a new tumour, same area of the breast and its Triple Negative too. Smaller than the original one its 1cm. I’m 3.5 years from original diagnosis. I will definitely be having a mastectomy but dont know about chemo yet. Can’t have radiotherapy as I’ve already had it to that side.
I will have the CT and Bone scans - hopefully it hasnt spread. They also mentioned that they may do a sentinel biopsy before any other surgery. Here we go…
hi katie so sorry you have to join our gang especially when you have been down this route before but welcome x
Hello Blue Dragonfly.
I have got my terminology muddled up. It is not “Grace and Favour” which is something completely different… When you write a notebook full of your favourite poems, sayings etc to pass on to your children it is called a “Commonplace” book. It is a very traditional idea, so that is why I like to do them in handwriting. I guess it is a written version of a memory box. Hope that makes more sense!
Best to all
Jo xx
PS Welcome Katie. You will find lots of support here. All the best for what you are facing into over the next few weeks. xx
Hello Ladies
Hope you’ve all enjoyed the weekend.
Just an update on my treatment status, finsihed another 3 weeks of radiotherapy currently going for the burn as it’s peaking…NICE!!
I’ve started on oral Capecitibane which is a little overwhelming with 10 daily tablets plus my pain relief, I’m offically rattling 
It’s early days and after 3 days haven’t had any noteable side effects although had a bunged up nose and raspy cough but this was coming on before I started, and I believe I’m most probably run down after the rads.
Doing my spare room up at the moment as a distraction, was trying to do it on the cheap but my costs are escalating…figure what the heck though!!
Hope Tina is enjoying her jollie not sure if she’s back today no doubt she’ll be posting once she’s settled back in at home.
Keep well everyone
Claire
XX
Hello Ladies
Hope you’ve all enjoyed the weekend.
Just an update on my treatment status, finsihed another 3 weeks of radiotherapy currently going for the burn as it’s peaking…NICE!!
I’ve started on oral Capecitibane which is a little overwhelming with 10 daily tablets plus my pain relief, I’m offically rattling
It’s early days and after 3 days haven’t had any noteable side effects although had a bunged up nose and raspy cough but this was coming on before I started, and I believe I’m most probably run down after the rads.
Doing my spare room up at the moment as a distraction, was trying to do it on the cheap but my costs are escalating…figure what the heck though!!
Hope Tina is enjoying her jollie not sure if she’s back today no doubt she’ll be posting once she’s settled back in at home.
Keep well everyone
Claire
XX
Hello Ladies
Hope you’ve all enjoyed the weekend.
Just an update on my treatment status, finsihed another 3 weeks of radiotherapy currently going for the burn as it’s peaking…NICE!!
I’ve started on oral Capecitibane which is a little overwhelming with 10 daily tablets plus my pain relief, I’m offically rattling
It’s early days and after 3 days haven’t had any noteable side effects although had a bunged up nose and raspy cough but this was coming on before I started, and I believe I’m most probably run down after the rads.
Doing my spare room up at the moment as a distraction, was trying to do it on the cheap but my costs are escalating…figure what the heck though!!
Hope Tina is enjoying her jollie not sure if she’s back today no doubt she’ll be posting once she’s settled back in at home.
Keep well everyone
Claire
XX
Hi ladies
hope everyone is doing ok I have been thinking of you + had a sneaky look at the forums mid week on hubby’s blackberry. Was very sad to read that fairy + linda had disappointing scans/ appointments 
I got home at 2am so I’m whacked + up to my eyes in washing but we had a fab week in Ibiza. Resort was lovely + weather gorge over 30 degrees every day. Drank far too much San miguel which was included in the all inclusive ! Seeing my onc on weds to discuss scan results + next steps. Local area very sore but have tried to switch off as much as poss. Felt very self conscious in my swim wear but I’m sure noone noticed only one of my boobs jiggled…!
Will come back on later + catch up with everyone properly.
Love to you all
tina xx
hello ladies and welcome back tina we have missed you !!glad you had a lovely break,well i had a much more productive app with my onc this morning,i still have lumps popping up and spread about so rather than more radiotherapy he has decided to start a new chemo regime,capecitabine(xeloda)tablets in hope of controlling it , if successful can stay on them longterm if not then he said we can try another chemo, i said even though fec and tax didnt do much did he hope this could and he said if he didnt hope then he wouldnt even try it . so have to have another scan to see what is happening elsewhere and await the start of treatment,has anyone had experience of xeloda good or bad any advice welcome…am just happy to be doing something after last wks rubbish app with surgeon (or maybe i was just sensitive)any way love to you all rachel x
hello ladies me again… was hopeful this morning after app, but just googled and read that capecitabine( xeloda ) used alone may not be effective…it put me down a bit , should i query it or trust my onc, maybe he doesnt want to do combos to leave more future options…but then fec/tax combo they rave about didnt do its job for me…what do you think please…x
Hi Rachel,
Glad you had some better news today. Well, I’m no expert, but I’m pretty sure that Xeloda certainly IS effective - there have been many on here and other sites who can testify to that. Why would they bother putting us on it, otherwise? We always concentrate on the bad stuff when we go Googling - I know I do! Maybe some people will come on here to back me up - or you could try searching this site for Xeloda/capecitabine (not sure of spelling) experiences?
Love too to Claire, Tina, Jo, Sadie, Linda, Katie (welcome!).
Sarahx
PS - Just did a mini-search on here and there is a thread called Capecitabine started by Jackie24 on 11th April with quite a few positive experiences of the drug.( Under Secondaries).
Hope I didn’t sound abrupt, Rachel, I know you’re so worried.
Got to do some chicken rustling now - 2 have escaped into our garden and can’t get back home - but they are so difficult to catch!
Hi Tina - welcome back. I’m so jealous of you having a lovely holiday in the sunshine (we went away this weekend and got soaked!), however I’m not jealous of your stack of washing and ironing! (all inclusive hols should cover this as well).
Good luck with your onc visit on Wednesday - fingers crossed you hear all the right things - please update us
Hi Rachel - Sorry I’ve no experience of Xeloda, as I’m on my first lot of chemo (Taxol), although this might change tomorrow after seeing Onc again. However the one thing I am learning is that there is no ‘one type suits all’ and I think we have to put our trust in our docs - why would they not want to give us the best treatment available. I really wish you well on this one x
Claire - you really will be rattling - 10 tablets a day. Is that all the Capecitibane or lots of other bits and pieces? I’m like you at the moment - full of cold. With a spotty face and a bloody nose from chemo and now a snotty bloody nose and puffy eyes from my cold,I’m surprised anyone wants to talk to me (its a good job my OH keeps telling me he loves me - cos it certainly aint for my looks!!)
All the best to everyone else x x x
Hi guys
thanks for welcoming me back lovely to hear from you all.
Linda good luck tmoro with your onc. You have so many chemo options available so don’t panic if they do change chemo. Taxane didn’t work on me but had good response on carbo so there will be something 4u x
Sarah hope u got some sleep today?! I also went bak2 bed this aft + had a few hrs snooze! How’s ur arm? X
rachel- so glad you feeling more positive after last weeks fiasco. Capcetabine is widely used + has been mentioned as my next option. Did they not mention platinum based chemos to you, like carbopatin/ cisplatin? My onc said she always uses the strongest + potentially most effective treatments first + platinums are shown to be very good in many cases of tnbc. It’s also very well tolerated. I’m not a doctor so don’t know all the INS + outs but I would maybe ask about carboplatin + leave xeloda til later??sorry if this confuses matters I’m just giving advice based on my experience with your best interests at heart x
hope everyone else is doing well? Hoping to see claire later in week looking forward to that!
Speak later girls xx
Hello all
Just a quick note to say thank you for being there. I am feeling a bit hopeless about things at the moment and finding that the suggestions on other threads are not quite relevant because the contributors aren’t triple neg. So it is heartening to have you lot there and to share the experience. I’m in a bit of a void. Happy to have no treatment for a while, but also worried about increasing pain in my chest and breathing problems. Having a physio visit tomorrow so hoping that will help.
Then tomorrow and Wednesday having a 24 hour “holiday” in Paris with my two boys before the eldest moves into his own flat in Wales in a couple of weeks time.
I have been following the discussions re various treatments. Not familiar with a lot of the options as have only had ineffective EC so far. So won’t comment, but will probably be asking questions in the future when my onc decides to start treatment again.
Sorry to be downbeat, but hope I will return from Paris in a brighter mood!
Big hugs to you all
Jo xx
hello all, thanks tina for your advice , my onc didnt mention carboplatin, i may drop a note to him while at hosp tomorrow and see what he says also may ask for a head scan had headaches on and off for last week and feel floaty dont know if its anxiety as i have been restless at night and when i wake am aware of headache but it doesnt wake me up, this is so crap had one in april that was ok so he may not do one, how are your headaches tina?have they eased?i just wish thay would go away and i would feel quite well despite my recurrence, any way going to try to keep busy ,love to you all xxx
Hi ladies
jo I’m sorry I hadn’t read back through all the posts properly + so had missed yours. Sorry to read you are so down + your treatment hasn’t gone too well. Really hope physio can help + keeping everything crossed the next treatment regime is successful. Enjy paris xx
rachel- my headaches have stopped thankfully. Been feeling well lately (*touches wood*). think it was tge cumulative effect of all the treatments, fatigue etc. I’m sure yours will be anxiety related as you’ve hada terrible few months. Please do ask about carboplatin- even the prof I saw at the marsden said a platinum based chemo was the obvious chemo after fec + tax failed. Carbo can be really effective for triple negs + there is a nationwide trial for triple negs at the mo (TNT trial) comparing tax to carbo. I think carbo will soon be used as the initial treatment as it can work so well. My nodes shrunk by around 70% after just 3cyclrs + I had miinimal se’s. Good luck xx
sadie hope you are keeping well + the weekly tax + avastin is still kicking arse ! When do you go away? I took a chance + didn’t get cancer cover just an ehic card + thankfully didn’t need any medical advice xx
margaret, Kelly + debs- hope you are all ok? I haven’t seen you posting for a while. Thinking of you xx
nelima hope things have improved + you are feeling better xx
love to claire, Sarah, hope + everyone I’ve missed x
back on later xx
Hello TNBC ladies!!
Tina - Your hol sounds fab nd just what you needed. So glad it has helped you move away from SE and have some fun! My holiday is in August - a little while to wait yet!!
Rachel - I dont know anything about your proposed drugs, i just feel that many tings work in different ways, so hope this does for you. Im glad you have help from others on this site! Hugs and smiles!
Jo - I totally agree about chatting to TNBC ladies being SOOOOOOO important. Having this to share info / life / ups / downs is very very very…um…good!!! I hope you are Ok at the moment. Who is in your picture? Is it a little dog on your lap? Hope Paris was FAB - how exciting for you!
Claire - Radio and oral chemo!! You will be zapped from inside and out - nothing will get passed that lot!! Hope you are begining to rattle less?? Enjoy your day with Tina if it happens. I am jealous - no one seems to live near to me! (Worcester)
Linda - I have been thinking of you so much over this week. A question for us all really…
Why oh why do things work for some of us and not others! ‘They’ HAVE to work this out. It is all so unscientific!! “lets try this and if not we can try this”. It is great to have options - BUT the SE are too great to just ‘try’. My chemo nurse yesterday said that with rectal/colon cancer they can do a DNA test that shows which chemo will work with you the best. This is what we need!!! I really do not understand how we can all be on so many different treatments - I know age and where our secondaries are will have an impact (im 44 with bones and lungs, Taxol / Avastin) but even people with simmilar things are on different stuff!! What else will change things?? Any thoughts TN ladies??
I am doing OK - waiting for the ‘chemo hit’ toworrow! We have a German exchange student with us at the moment who is very nice, but odd having someone else arround! Anyway, she has got used to the hair coming off - so im sure she can cope with ‘lady on couch not doing much’
Hugs to all - and I hope the washing pile is reducing Tina!
Sadie Xx Xx
Hi everyone
Just a quick update. I went to see Onc on Tuesday and despite the previous week telling me he thought the cancer in my neck was possibly increasing, he has decided that I should stay on Taxol and Avastin. He is reluctant to ‘abandon’ a chemo too soon and wants to see how things do in another month.
I really don’t know what to think anymore- I am so frustrated not to be in control of anything
Sorry to twitter on - I’m sure I’ll be smiley again soon but at the moment I’m just p…d off
hi linda this is all so crap , but hang on in there next month could be a total turnaround i really hope it is i know what you mean about having no control we can only take their word and trust them best of luck for good news soon x
Thanks Rachel - you’re right, it is crap BUT you’re also right that in a months time it could be a complete turnaround - I’ll stick to that thought from now on.
I do hope your headaches have eased off - having headaches on top of everything else really is unfair.
Love to everyone else
xx