Hi all
jst bumpng to see how everyone is doing?
Tina x
hi tina and everyone, i finished 15 rad sessions last wednesday so very red at mo.just hope it deals with the recurrence but worryingly can feel very small lump (possibly also a tiny one)under rad field at bottom of ribs not even breast ares so bit miffed but see my surgeon on 13 june so may wait and see til then, dont really want to rush there while so small, what do you think ?just wanted to give update x
Hi All
Hi Fairyqueen - What a worry! I suppose you have two choices - to ask now or wait. I know i would find it difficult to wait, but then again, maybe waiting is best? I remember someone said to me leave anything you are worried about for 2 weeks (unless really urgent!!!) and if you are still worried - ASK. But 9/10 times you forget about it in this time and it goes away. Whatever you do - hugs from me sitting on the couch nd thinking of you!! Xx
Hi Tina - So glad you had a good 2nd Birthday with Dan - what a special time!! Two is a wonderful age, so much fun! Im glad to see you counting down to the last chemo and a holiday! Sounds a good plan to me. I hope the twinges are nothing - but difficult to ‘brush under the carpet’ and not think about it. I dont know if the worry ever stops, but somehow life (and a good life) carries on arround it!
Hi Jo - Your comments about people saying things to make themselves feel better is so true. The ‘you won last time, you will win this time’ comments are so hard and I, like you, thank this thread as the reality is not as we would wish it to be. I hope you are doing OK. I cant remember when your scans etc are - good luck!!
Im Ok - I think!! Everyone is out this evening, daughter at a sleep over, son at cricket, OH at a concert and im not sure I like it!! Trying to keep myself busy as otherwise I start thinking…and thats not always a good thing! Just coming out of Monday’s chemo fog so will have a few clearish days before chemo again on Monday. Relentless!! But - if it keeps it away (dont want to use the C word tonight!!) then I will be the first to line up to be plugged in!
Love and hugs to all
Sadie Xx Xx
Hello All
Good to catch up with all the previous comments you’ve posted, hope everyone is doing well and enjoying the recent spell of good weather we’ve had…she types looking out on a very wet garden…big fat sigh!!
I’ve just finished my 6th cycle of gem/carbo its been a hard slog and I’ve had many knock backs but the help and support we have for each other on here helps me look forward to each new day. I’m being marked up next Thursday for further rads, and I’m hoping and praying that it nukes the majority of the little blighters!!
I’ve still got largish lymph mets in my neck collarbone and shoulder plus the addition of a couple new lumps close to my mx site (which the onc is keeping an eye on but sadly the rads won’t be able to cover this area) the results of my scan last month showed that the chemo has stabilised my mets but not made much of an improvement which is of course dissapointing after 8 months of chemo but stable is good and I’m course aware it could be a lot worse and for now I’m enjoying my chemo break.
Take it easy everyone.
Claire x
Hi all!
Great to have you back, Claire - enjoy your chemo. break and wishing you Good Luck with rads! Have to “run” to shops now before closing time - love to everyone on here,
Sarahx
Hi Claire - So glad you are getting a chemo break and I hope the rads go ok and are not too tiring!! As you say, positive that things have stabilised, but I also feel your disappointment. Glad you are getting support from this site and wish you well for the next few weeks and months.
Hugs to all and hope you all had a good weekend! Mine was ok - a bit odd in parts, but unchemo related - just normal life not being what I want it to be!
Sadie Xx Xx
I ladies
hope you’ve had a good weekend + are as well as can be.
I’m feelin a bit bushed after another busy weekend. Had dans birthday party in our house yesterday so that was hectic (but lovely) and thurs + fri were spent spring cleaning + shopping for buffet food etc. Haven’t stopped. Also ended up in a+e with dan on fri eve coz he inserted a piece of sweetcorn up his nose!! Kids eh!! It went right up so nhs direct said it was as emergency as he could have choked on it. They got it put eventually but it was traumatic 
last carboplatin due this weds but I seem to have lots of bruises so I’m worried my platelets might be low again. I hope not as it will ruin our holiday plans if chemo is delayed. My scan is booked for 1st June + were hoping to go away for 10days on 2nd June. Seeing onc on weds then hoping to book straight away.
Bit nervous about scan- local area increasingly sore quite a large area. Still lumps + bumps that don’t seem to have shrunk despite my last scan suggesting otherwise. Still having twinges in side + occasional head twinges but being tn+ paranoid, it’s easy to read more into potentially innocent ‘symptoms’… Do you guys have head scans routinely?
Weight is still piling on despite ditching the steroids. Not eating alot at all but I’m now nearly as heavy as I was full term with dan thank goodness I’m tall. Hoping to lose a few lbs before my hols.
Hope everyone is ok. Has anyone heard from sandra lately? Hope all is well I haven’t seen her posting for quite a while + have pm’d her.
Love to you all
tina x
hi tina , your posts always amaze me you seem to be on the go all the time,its great! hope your app with onc goes well , i requested my head scan when having routine scans due to recurrence as was headachy and felt odd but was told it was ok, maybe stress related just feel like i ache all over some days even as i type shoulder is painful, i just dont know and as you say trip neg just so scary.hope all goes well and you have great holiday love rachel x
Hi All
I posted on here a few weeks ago and since then I have been back in hospital to have a portacath fitted ready to start my chemo tomorrow, for the second time! Had FEC and Tax last time and now been prescribed CMF x 6 sessions (3 weeks in between). I’m really down about it because I think knowing what I know from before is sometimes worse than going into the unknown. Ended up staying in hospital two nights last week because they had to give me a general as they had to cut into my lower throat to get to the jugular vein to fit as apparently can’t use same vein twice! It really freaked me out and although it’s not too bad now I’m freaking about the chemo tomorrow! My recurrence is in the nodes in the axillaire (underarm) 3 out of 6 were affected and have been removed and no spread anywhere else apparently, as I had a PET scan. Has any one out there had experience of this type of recurrence (now classed as triple neg although the oestrogen level was less than 5%)and also anyone had CMF chemo? My original breast cancer was oestrogen positive (30%) so now am on Arimidex for 5 years as well. Really don’t know what to expect, I live in France so again difficulty with language although a lot of the docs speak English, I really don’t know what my prognosis is and whether I will be cured after this chemo and therefore should feel positive every day that it is the best course for me. I really don’t want it to come back again for a third time! LOL Ginny x
Hi ladies
ginny welcome to the thread. I posed on the recurrence thread when I saw your news. So sorry u had such a hard time with the portocath- but it will save lots of stress in the long run. My piccline was a nightmare being fitted but it’s been agodsend as my veins are crap! Good luck with chemo- did u read my post where I suggested u ask about a stronger chemo + maybe contacting lulu for advice? I still say I’d push for a taxane or pkatinum chemo as they have good results with tnbc. Where I’m treated, cmf is used for less aggressive + advanced primaries (fec+ ta are used for larger, higher grade primaries). Just a suggestion because of the lack of additional treatment options for us tn’s. All the best keep us posted. X
hi rachel good tohear from you. Thanks yes I’m a busy bee it’s how I cope! But feeling bit wearyat the min, + a few worrying symptoms stressing me out. Defo not my best. How’s the rash- did the rads get rid of it completely? Remind me, are u having more chemo now? Good luck x
hi to everyone else too x
I’ve been feelin a bit rough lately + have some concerns due to headachey twinges, increased motion sickness, low-level dizziness. Have been googling symptoms of brain mets + I’m worried sick. Head feels heavy. Can’t decide whether to mention it tomorrow at my onc appt pre-chemo? Might monitor it + mention in a few weeks. Really want to go on holiday + I’m worried if I say anything, I’ll be sent for a brainscan…
I’m hoping it’s just extreme tredness- the alternative just doesn’t bear thinking about…
Back on later xx
Hi all hope everyone is doing okay on this lovely pouring down with rain here in sunny Devon day. Ive been reading your posts and keeping up to date with you, thinking of you all. I just want to let you know Ginny that I was on CMF in January thru til 5 weeks ago when they decided a weekly paclitaxel (spelling??) was a better option for me. However I had the CMF every 3rd week and it was fine. I have had FEC/Tax in the past and Gem/carbo and Xeloda, then as I say CMF. I didnt have many side effects, felt a little bit tired at times and hair did start to thin, its actually just about gone altogether again now with the paclitaxel. I did start to get a tingling in my fingers on left hand which I assumed was this peripheral neuropathy thingy. It didnt ever get any worse, but again now on paclitaxel it has gotten worse and find it difficult to use left hand. I hope you will be as good on CMF as I was, it wasnt a difficult one for me to tolerate at all and seemed to keep things steadyish (is that a word) and was a good one for me due to the dermatomyositis. Glad Dan is okay after the sweetcorn incident Tina, I did the same thing once with a stud earring…long story, was messing about, snorted laughing and up it went, very embarrassing situation. Anyway best wishes to all you ladies, thinking of you all. Debs xx
Debs our posts must have crossed!
Great to hear from you- you sound bright + chirpy 
hope you are feeling as well as can be? Lol about tge stud earring!! The doc says they haveseveral admissions a daywith foreign objects up the nose 
you take care xx
We posted about the same time Tina so I missed your post. I had a funny episode with head too and had scan which thankfully was clear. I was having headaches not immense pain, enough to send me to bed a couple of times, but when you dont have them then suddenly do its a worry, was also quite dizzy at times and felt all echoey in my head, probably due to limited brain size and excess space in there! I was also having nose bleeds and a very heavy head. Anyway after the scan came back clear they told me it could be hayfever which Ive never had before. I was a bit surprised that they thought it was something as simple as that and was covertly thinking they were wasting time but I took the pills which they suggested and its eased a lot, I cant believe its hayfever, I was convinced it was something far more serious and sinister. I know what you mean re not wanting to mention it just yet but I find when I get there I cant help myself and everything comes out. Good luck whichever you decide tomorrow xxx
Dear All ladies
Glad to see we have our own thread as felt a bit isolated with TNBC as rarely meet anyone with it. I have corresponded with Tina but quite new to site. I was diag June 2010 with secondary already in liver. had great response to EC and liver ablation and mastectomy followed by clean scan early march. 3 weeks later had skin recurrence over scar. Scar excised and turned out was in nodes armpit and chest and so radiotherapy cancelled. I then had CT and has spread to Lungs and liver again so am devastated. I am on weekly taxane and had 3. No side effects other than tiredness.
Am still shocked at aggressive recurrence as this disease is so unpredictable. Is a mystery why we are all put on things in different times as I was told EC, then taxane, then platinum,then Capecitabine then gemcitabine but seems we are all told different things.
I was funded for Avastin by BUPA but cannot have as clot rik and already had a clot.
I too am planning a christening for two boys; 2 1/2 and 1 next month.
I wish you all luck with treatment as at least seems to be chemo sensitive.
Not sure where you all live but I get Iscador every 3 months free on NHS from Royal London Homeopathic, part of UCLH Hospitals Trust and was referred by my GP.
Hi Again
I am on weekly taxane as seems many of you are or have been. Did anyone talk about taking B vitamins as was advised to for neurppathy and possibly hand cooling. I took frozen peas but was told not effective so did not use. I am also given mixed advise re hair and one Cons says will lose and one says won’t.
Thanks
Hope 15
hi all , hi tina in reply to your post cant really tell if rads have sorted the rash as area very red but going to clinic tomorrow as have 2 small lumps under rads area just missed by about half centimeter ,its as if this bloody disease can see its being blasted and pops up elsewhere I HATE IT!so going tomorrow but dont have high hopes knowing ahat we do about tn,hope your head settles down could it be the chemo building i had horrible heads on fec/tax then had scan last month but was told it ok but still have dreamy heady days!just full of aches today too what a whinger! you take care sending you hugs love rachel x
Hi all off to start chemo tomorrow as well can’t say I’m looking forward to it beeing tn never know what’s gona happen hope everyone ok tc Laura
Hi Ladies
Thought I’d join in having read all your updates (I’m TN and on Taxol plus avastin - now done 6 out of 9 - only DX in march this year, so my first lot of chemo).
Laura - all the best for tomorrow - what time are you in? Lets hope it all happens smoothly. I’ll be keeping my fingers crossed for you.
Hope - its nice to know I’m not the only one getting mixed advice. My onc nurse has told me I can do what I like - no 'do’s and don’ts - not sure if this is helpful or not.
Fortunately no tingling hands etc so haven’t looked into the vitamins but I’ll make note of that for any future happenings.
Rachel - good luck tomorrow -lets hope the little b…ers have been blasted and the lumps are something and nothing.
Hope everyone else is doing Ok . I’m off now to see how many more spots have appeared on my face - I feel like a spotty teenager again - IF ONLY!)
LInda
Hi linda999 I’ve gtg at 1030 but got to see doc first I’m not sure what time chemo be they just sd plan all day at got to do bloods etc tc all Laura
Hi all just wanted to pop let u know how I got on had chemo all ok and at moe not one single se but early yet just bit woozy and tired was a long day chemo unit at 12 chemo started at 2 then with 2 lots and other bits got out of there at 630 left home at 9 such a long day but was v pleased with doc saying they expect it to work so pleased I got transferred well off to bed now hoping to slp tc all Laura x