Hello ladies
just a very quick post tonight as I’m exhausted after a long 1st day of toilet training my little man! Only just sat down haven’t stopped since 7am…
Thanks for the support re tmoros scan 
I am pretty pessimstic to say the least but praying for a miracle. I’ve defo got a wheeze so I’m convinced I’m in for a lung mets dx but hoping beyond all hope Its viral or an infection. Feeling really tired + out of sorts which is also worrying me. What will be will be though…
Rachel do u get results tmoro? BEST of luck let us know how u get on x
Sarah- hope u can shake off the lurgy + ur xray results give u some reassurance x
sadie- well done on reaching no18!! Wow ur doing great will keep everything crossed it’s still working + u get good scan results next wk x
will catch up properly with every1 tomorrow. Love to you all
tina xx
hi tina, just to say good luck tomorrow am keeping everything crossed for you …i have asked bcn to call me with results but am seeing onc wednesday but have had a pig of a bachache but as you say i think we feel crap so expect the worst … good luck with the potty training , that takes me back… giving them a sticker when they used potty helps lol …
sadie yes i had probs getting on forum had withdrawal ,good luck next monday…hugs to everyone xxx
everything crossed here too.
take care xxx
Tina - Hope your day was OK…scans and potty training!!
FQ - Good luck for tomorrow’s ONC meeting!
Sadie Xx Xx
hoping and praying for good news tina and fairyqueen xxxx
thankyou lulu and sadie will post results , am really worried with all my aches and pains even though outer lumps have more or less gone xxx
Hey girls
Well the scan is done and dusted just got to wait for results now. Will book an appt with my onc for next wed as that is clinic day. I was assured the report would be done by then by the staff I saw today (lady in charge said she would put my notes in the ‘urgent file’ so I will get my bcn to check the system daily). Keen to get back on treatment asap…
Potty training is going well!! Hes using the loo (with a training seat)not the potty and he’s exceeded all my expectations. Mum looked after him for a few hours today whilst I was at the hospital and she was suitably impressed 
Rachel really hope its good news for you tomorrow. The lump shrinkage has got to be a good sign- in my experience the local disease has been the most resistant to treatment too. Do let us know how things go x ps did you ever hear anything about funding for carbo/ avastin?
Lulu- thanks for the kind wishes Any news on your treatment plan as yet? x
Sandra- a belated welcome to the thread Fingers are crossed for you that the treatment is successful and the se’s are minimal! x
Sarah- any xray results yet? Hope you are feeling lots better? Is your son back at school this week? Plenty of rest for you, if so! x
Sadie- how you feeling after chemo number 18?!? Hope the se’s are not too bad. Remind me how you came to have avastin please- its been mentioned to me but I know claire was refused funding so Im worried I may not be eligible. Im hoping to have it with capcetabine but I’ll also ask about cisplatin, since I had such a good response to carbo (both platinum based). Hope you are not too stressed about your scans next week x
Laura- are you back from your hols? Hope you had a ball if so! Any decision on whether to proceed with last chemo? x
Jo (hope)- how are you feeling. Hope all is well x
Hi to anyone else reading too x
Feeling really fed up and ratty- like severe pmt. Really think Im hitting menopause especially as my periods have been eratic lately (had 2 back to back last month). Spotty face which is unlike me and so tired. Really feel like bad news in on the way but just want to get some chemo in me and fast- whatever the situation!
Speak soon everyone
Tina xx
Hi Tina - My ONC applied for special funding. There is a special pot for ‘expensive cancer drugs’ from the government. So it is not NHS funded. You have to fit certain criteria - and im sorry, I do not know them! I just know I fit them. Your ONC should know or be able to find out. Im sorry you are feeling miserable! Did you feel the same last scans - and they were better than expected? Maybe the same again? Fingers VERY crossed for you. Im felling OK about scans at the moment - but i spent some time reading about treatment research and outcomes today - which I should not have done! Various facts and prognosis I dont want to buy into!!
Anyway - today Im good! And that is all that matters today!
Hugs to ALL!!
Sadie Xx Xx
Tina, you are a wonder, all the rubbish you have to deal with AND you remember everyone else, and then you are doing potty training! Glad your little man is doing well.
Love to you all
Lavender
xx
Thanks sadie Glad to hear youre good today too! Yes I know about the special drugs fund thankd, and assumed thats how you had accessed avastin but wanted to double check youre not on some sort of trial. My onc has mentioned applying for funding and said I would likely be a good candidate due to age, otherwise good health (!), lack of other treatment options etc. Im just worried after claire telling me she’d not met the criteria (I’m sure she was told it had to be a 1st line treatment or something?). Oh well I will speak to my onc again next week. Did the application for funding take long can you remember? I naturally dont want to delay treatment for too long. Its a minefield isnt it :(. Thanks again for getting back to me xx
Ah Thanks lavender you are lovely and always have nice things to say! Im just thankful I am here and well enough to potty train my little man as there is so much I probably wont be here to do for him…
I hope reading our thread doesnt scare you coz most triple neg ladies make a full recovery. I used to read horror stories on here and then be awake all night worrying!!
You take care
Tina x
Hi Tina, ‘first line of defence’ rings a bell, but I’m not 100% sure. The funding came through quickly, a week or two I think, did not delay things!
When Dan starts big boy stand up wee wees draw a face with permanent marker on a ping pong ball nd put it in the toilet!! It does not flush away nd my Son loved it!! Anything to make it fun!
Sadie Xx Xx
Hi Tina, Rachel, Sadie, Lavender and others.
Glad the scan is over tina and hope they don’t take too long with the results. Fingers crossed that it’s not bad news. Well don’t with the toilet training your wee man sounds like a bit of a star.
Had a bit of a search and came across this for avastin… Basically I think it’s saying it should be given with a taxane or capcitapine but if you already had tax and anthracyine together then you shouldn’t have it with cap
mims.co.uk/news/1087567/Avastin-licence-extended-metastatic-breast-cancer
There has been a lot of press in America as the FDA want to withdraw funding for it for metastatic breast cancer and they are in lengthy talks to have it but only to be given with weekly taxol.
I am seeing my consultant this afternoon. The staging MDM was yesterday so hopefully they will have decided on a bit of a plan. Will update you later. Hope it’s positive news for you Rachel.
Thinking of you all xx
Lulu xx
Hi all
Tina just to let you know that when I went for my first chemo on 19th Aug onc said I’d be better on Avastin and she was going to apply for funding for it. Due next chemo on Friday so will pm you to let you know the results of the funding and what’s happening
Jo x
Thanks for the info ladies. Jo please keep me updated on your situation with avastin :). Lulu I’ll have a read of the info in the link. I had fec tax originally so I wonder if it rules me out of cap with avastin? Also, do u know whether resistance to one taxane rules out the other taxanes? Taxotere didn’t work on me (skin mets happened immediately after last one), so does that mean weekly tax would be ruled out? I’ve always assumed so…
Good luck today anyway lulu lets know what is decided in the meeting x
Rachel thinking of you Hun + hoping you get the good news u deserve x
sadie thanks for the pingpong tip!! He will love that!! X
just looking at prices for Disneyland Paris for next wkend. I figure I’ll start chemo the following week so best do it asap. Dan still only young + a bit scared of the big characters but hopefully he’ll be ok after a few hours. Really want to take him while I can + before the cold weather really sets in.
Back on later have a good day all xx
Good luck to Rachel and Tina and hope good news.
Congratulations to Sadie on reaching 18 paclitaxol. I had 14 this week and feel really rough. I usually havent felt too bad but this time totally wiped out, nauseous. Did you get different side effects on certain treatments sadie or does it suddenly get worse towards end? Did you have piriton always with paclitaxol as i want to stop as wipes me out but Onc says protets against allergy.
Still in pain with liver but Dr reluctant to scan as was doing well 4 weeks ago. Think because chemo bad this week and awake all night terrified that something else going on and dont know whether to have another CT or sit it out as he suggests. Have another friend who also went downhill quickly I met at PBCC with triple neg and makes you panic sometimes. My little one started as pre reception nursery and seems so grown up for 3 sometimes. BAby is 14 months now crawling everywhere but really hard as cannot bend to pick him up at all.
sorry for down post today
jox
love to all on here,
hi all , thankyou for your good luck wishes,well i saw my onc and there is no soft tissue disease so thats a relief but there are numerous bone lesions so having bone scan sorted but he said he is sure that these spots are disease response to the chemo (dont really understand the technicalities) but apparently when the chemo is working it can highlight these areas so could look worse before looking better but looking at the overall scan he is happy for me to continue on capecitabine,also adding bendronat and calcichew…to strengthen bones if anyone has info on this i would love to hear it , he thinks my backache could just be backache but we will know more with bone scan … so another ct scan in 2 to 3 months… so thats it could be better could be worse. tina hope you get results soon and good ones thankyou all again hugs rachel xxx
Hi Rachel
So glad the scan showed the chemo is working YAY!! Did he mention the pleural effusion? Try not to worry too much about the bone lesions (easy for me to say) butI think the main thing is that your liver and lungs are ok Any news on the funding for additional drugs like avastin? So glad youve had some good news for a change xx
Jo- Im sorry you are having such a hard time 
I have been thinking about you and wondering how you are doing. It is good that your onc is not overly concerned about the liver pain. Could it be a response to all the chemo (it is the liver that deals with all the poison after all).It is so hard with young children isnt it- but ensure you are getting some rest. Hope you have plenty of support xx
Im going to text my bcn now to see if there is any news…
Tina xx
hi tina, i cant have avastin as has not been a year since tax or a year free of disease,(which i was told was the criteria)but he said when he knows this chemo stops working he will then apply for the carboplatin, i just cant believe these numerous lesions have shown up in only 6 wks but maybe they were there but so small and as he says the chemo has made them more obvious , i just thought if the chemo worked they would be gone!!!maybe bone reacts differently,but then the rest has stayed ok and outer lumps gone so more comfy in that area, i asked about the pleural effusion and he said it didnt show any progression with that so i presume its stable, i dont know how i feel its just a rollercoaster and we have to believe what we are told but its hard anyway i just hope you have great news hugs to everyone xxx
Hi all hope u are doing ok had a nice week hol was nice to get away Tina glad scan went ok hope u get some gd news I went to see onc today he sd because of the probs with hands feet he didn’t think I shld have last chemo so glad he made the choice for me what he did also say was he looked again at my last scan and now he is saying because its so small he don’t know if it’s active cancer or just scar tissue from chemo I’m so plsed can’t be sure I know but at least it might be gd news I’ve another one in 4 wks to get end of treatment size so might know more then also he did say there might be a trial I can go on that treats prostrate cancer it’s a tablet that he thinks might work on tn but I’ve got to have my tissue tested first to see if it’s the right sort then I might be able to go on it when I know more I’ll let u know I also asked about cyberknife which he is going to look into so in all a gd meeting today hope everyone is ok love hugs Laura xx