Thoughts and love to all on here, hugs to Jo. Sorry about the cyberknife news, Sadie,
Sarah xx
Hello ladies
I did post last night and lost it and was too tired to re-type…
Jo- big hugs to you today. What you are going through and have been through is unthinkable 
Such a sad day for you. It seems some people have way more than their fair share of bad luck. Hope you are coping ok and have lots of support and cuddles from your family. I have no advice on the blood counts and transfusions, Im afraid. But I have heard its not uncommon to need transfusions on carbo and apparently, the relief they provide is instant so Im hoping you feel Looooaaaaads better once its done. Lots of love and good luck to you xx
Rachel- How are you feeling? You are also having a nightmare at the moment and I really hope that you are feeling a little better since the drainage last week. Is it friday you start carbo? Hope it is kind to you but kicks the cancers arse! xx
Laura- hope today went well? When are you next due a scan? Good luck xx
Lulu- how are you finding the tax-carbo combo? Hope you are managing ok and the hair loss hasnt been too traumatic for you. xx
Sadie- thanks for the pm. I start tomorrow, cant wait to be honest! Sorry to hear about the cyberknife- hopefully you wont need it as the carbo is probably doing its job. Any news on the scan following the reg’s cock-up? Fingers crossed xx
Hi to everyone else too hope everyone is doing ok xx
Havent heard from linda and tara (Jo) for a while hope they are ok.
I have my carbo tomorrow morning cant wait to get some poison in my veins. Praying it works well like last time. Had a picc line fitted yesterday, not pleasant but went in easier than last time thank goodness. Its really high up my arm and so very discreet, which is good. Still not 100% after the fluey virus Ive had and Ive been in agony for the last 48hrs after pulling a muscle in my back with all the coughing The cough is loads better now and Ive spent much of the day in bed today and the back pain is easing too.
Fingers crossed for all of us ladies.
Love to all, from tina xxx
Jo sending you extra special big hugs on this sad day… Very pleased to hear how well the cancer has respond to the carbo… Hope your treatment went well today and that after your blood transfusion you have super healthy Hb for the rest of your treatment… My Hb actually went up after my first tax/carbo… This is the nhs advice on iron rich foods… I love beans of all sorts so that’s maybe why I have a good blood count…
nhs.uk/Conditions/Anaemia-iron-deficiency-/Pages/Treatment.aspx
Nats hope you are feeling better after your transfusion and that your energy levels pick up.
sadie sorry to hear you also lost a son… Bummer about the parking ticket and really really sorry to hear your news from the marsden… Just seems to be one slap in the face after another for you too.
Tina loads of luck tomorrow… I hope your fluey symptoms have disappeared and that your pulled muscle improves … I’m glad carbo is one of the chemos I’m on as everybody seems to be having such good results so fingers crossed thats the same for us all… My hair is still falling out but continuing with my hair loss experiment to see how long it takes for it all to go… Think I only have about 1/3 left and very very thin in places… I’m not the emotional type when it comes to my hair… It will grow back (I hope!)… More concerned about the cancer than my hair.
Sending love and hugs to everybody
Lulu
hi all gd luck tina for today hope your all doing ok my news from the marsden is not great the reason for not doing the op or cyberknife is because they have found 2 lymph nodes that they think also is cancer near the windpipe and all the while they are inflammed they will not even consider it ive gtg for next scan in dec so will have to take it from there i have had 5 scans and none have shown up before all a bit much to take in wasnt exspecting this at all tc all laura
Oh Laura, I am so sorry! What difficult news and a shock. Lots of cyber hugs.
Tins, hope your day went ok nd you can take it easy this week. I’ve got scans booked for next week nd results the following week. I pmed Linda receintly nd she is having a bit of a forum break with her chemo break and is ok. Not heard from joey receintly though. I’ve pmed her to say Hi!
Hugs nd smiles to all,
Sadie Xx Xx
Hi ladies
Well I survived my 1st carbo today. It was uneventful and Ive felt ok since and kept myself active. I have eaten everything in sight today, honestly I react worse to the steroids than anything else. Will probably count sheep all night tonight…
Laura, sorry to hear about your day. Could you ask for a pet scan or something similar to get a more conclusive view of the nodes? Surely a pet is the best way to rule out/in more mets? Hopefully your scan in Dec will be stable and you can enjoy christmas off chemo. I havce worked out my chemo dates and I have chemo #3 a few days after christmas and so should be able to enjoy the day without too many se’s. xx
Hope evryone else is doing okay today. Big hugs especially to Jo xx
Speak soon xxx
Glad your chemo went ok today Tina, you’ve been in and out of my mind all day today. Hugs to everyone else on the thread too, I am a thread stalker.
Take care
Vickie
Tina at the moe they are saying just go by ct scan I’ve also got ear pain but my gp cannot find a reason sd if my teeth are ok I’ve got to mention this to onc never heard of it before more agro
Tina glad carbo went well… also on pre tax and carbo steroids so got serious insomnia tonight… my chemo no 4 is due 4 days after xmas so couldnt have worked out better!
laura that all sounds so poop… never heard of the ear pain either but do get it checked out too.
hugs back at ya vickie you thread stalker you xxx
Lulu best of luck with your chemo today 
Hope u got some sleep? I got a bit with the help of a zopiclone. Think the fact I had chemo late morn as opposed to pm helped. Will be taking my daily steroids sparingly as I’m already 2.5st heavier than I was at dx! X
vickie, thanks for thinking of me. Hope you are doing ok as can be this week x
Love to everyone on here. I’m having a duvet day whilst dan in nursery…
Tina xx
Hi Everyone
I have just found this thread and find it interesting has I was diagnosed with TN breast cancer April 2010 and after a mastectomy, chemo and Radio I thought all was going to be ok.
I was told October 2011 that the cancer was back on the mastectomy site and in the lymph nodes under the sternum and lung.
I started carboplatin on the TN chemo trial and I go for my scan in January to see if there is any improvement.
This is such a scary time because you just dont know what is going to happen, and as much as I try to be positive it can be hard when you think of your family.
This TNBC, secondaries and reoccurrances was not really talked about when I was diagnosed in 2010 which is a shame because I think we should be made aware of the situation in full.
My best wishes go out to every single one of you going through this because it is flippin hard at times.
Luv Lou x
Hi lou
welcome to our thread although I’m sorry u need2 be here. Yes tnbc can be a real nightmare, totally unpredictable + particularly aggressive Ive chatted to lots of ladies on here who’s original dx was very early, small cancers, no nodes, etc but still got secondaries. I did do lots of reseach on triple neg after my dx and scared the pants off myself, but even that didn’t fully prepare me for an immediate recurrence in skin + chest wall within weeks of my last chemo.
Best of luck with the carbo- how have u found it so far? I had a course earlier this year it worked well + so I am giving it another go now, following a disappointing scan result last wk. I find it quite doable as far as chemo goes + find the constipation+ sleeplessness the worst se’s. I have been lucky enough to have a 6month chemo break over the summer so try + remain positive and hopeful that carbo will kick butt! There are quite a few of us on here who have had good results on carbo
do keep in touch, we can offer friendship + support to help yu through.
Love tina xx
HI All
Thanks for all your kind messages - you are all such lovely ladies and so supportive. After 11 hrs in end in hospital with blood transfusion and chemo tues wiped out this week. I wondered why not sleeping again and hadnt realised carboplatin. I too take zopiclone but does not really work anymore.
Hope the carbo goes well Tina and the results are good. I am sorry you are on too Lou but hope works for us all. Laura - sorry to hear about the scan as all so vague with this illness just pops up and down and so hard to know where we are most of the time. Hope everyone else okay.
jo x
hi all thanks for your gd wishes now over the shock im onto making notes getting all the info i can ive posted in another thread so if you dont mind ill paste it here to see if any of you lovely ladies know you know what its like loads questions and no one to ask to jan many thanks hope y all doing as well as exspected lauraxx
hi i have lung mets had chemo responded very well fin aug there was talk of cyberknife or op but on review they have found 2 nodes near widpipe v small which they think are also cancer so treatment not a option only chemo again my question is if i have chemo will it be able to get inside the lymphs or does it have to wait for it to spread outside of them first ive not had any nodes involved up to now so dont no how it works.the other thing is i was put on chemo in may no sign of these nodes then only the mets and as i had responded very well to chemo and it is meant to mop up any odd cells lurking around im surprised it as got to the nodes if the mets were stable from july to last scan in aug yes it might of been there before but surley they would have seen it on my cts all very weird.my next question is does anyone know how they can tell the diffrence from healty nodes to unhealthy nodes on a ct know seems to know the answer my next scan is not to dec then back in jan for results so a long time to wait just wondered if anyone could help with any of the above many thanks tc all laura
Laura up till my recent recurrence I hasn’t had nodes involved but they think there were there at primary TNBC diagnosis two years ago and that the Chemo I had then had shrunk them down and was only in the past 18 months since Chemo finished they had grown big enough o be seen as MRI last year didn’t show them.
So your Chemo may have done the same and shrunk it small enough not be visible on scan but not eradicated completely.
Hopefully they will give you slightly stronger Chemo that does zap the node cells totally.
Lou sorry you have joined our club… Like Tina I read a lot about TNBC at diagnosis and scared myself silly too. But I felt knowledge is power
I didn’t realise the carbo caused sleep probs but have some lorazepam to take on steroid days.
Tina hope your still doing ok after your Chemo… I didn’t sleep at all on wed night/thur am despite repeated attempts… But slept loads yesterday… Dozed in the chair on Chemo ward was another long day 9am to 4.40pm! Fell asleep last night at 8.30 bf had to wake me up to stuff meds in my mouth and fell back to sleep on sofa and woke up full dressed at 11am but felt really good. Just preparing myself to stab my tummy with neulasta jab. Started doing mouth care already to see if that helps with the tax tongue this time around.
Jo hope your transfusion starts to kick in soon.
Love and hugs to all you ladies xxx
Hi lulu do u have any idea what chemo they use on node inv i just fin carboplatin/taxol for my mets it was intreasting to hear about your nodes I can’t belive they wld be there all that time and not grow big enough but wat do we know many thanks Laura x
Jo- really hope you are through the worst of it now and start to feel better now you have had the transfusion. You have really been through it and deserve for things to get easier xx
Lulu- hope you are feeling ok post-chemo? Im not sleeping great despite sleeping tabs but hoping for some nice zzz’s tonight xx
Laura- try not to worry about the nodes too much. It is organ involvement that causes the main problems, so your lung mets are your main concern. If the nodes have not shown up before, its possible that they werent affected previously. The disease has probably progressed a little whilst you have been off chemo, and the cells travel through the bloodstream and the lymph. In my case, lots of new nodes have flared up and been picked up on this latest scan (neck, clavicle and chest- all on the small side but enlarged and thus probably, cancerous). They were not a problem previously, but the disease is progressing slowly in my nodes and now sadly, eslewhere too.
The reason your team are probably using this as an excuse not to operate/ give cyberknife is because there is evidence of disease elsewhere. My onc has explained to me that once we reach stage 4, the disease is systemic and its generally pointless chopping/ blasting away a bit of disease in one area when the chances are, its brewing somewhere else already. Unless they are absolutely sure there is no cancer anywgere else, they are unlikely to treat mets as aggressively as we would like them to. Hope this makes sense and helps a bit xx
Hi to everyone else on here, hope you are all ok xx
Anyone heard from Rachel this week? Im a little worried as she has been quiet and I have pm’ed her with no reply. Rachel, hope you are ok if you are reading this xx
Love to you all,
Tina xxx
Hi Tina thanks for that my nodes were only found by mistake because I was put forward for surgery or cyberknife they then in he’s words reviewed my scans in more details that’s our they found them I was the ideal candidate for surgery only 2 mets until they found thease he sd they were up and down on my last 3 scans shame they didn’t look at them more closely then I’ve not been scanned since aug and they sd mets were stable then
normally for node pos TNBC at primary diagnosis you would get FEC-T… because my case is unusual and there is no precedent for interpectoral nodes they have just gone for what they think would work well taxotere/carbo x6 this is a regimen usually used along with herceptin for her2 node pos ladies rather than TNBC.
to get research and evidence for interpectoral or other unusual recurrence site would take many years and by that time there is likelly to be many more therapies available by that time.
my team cannot be sure if my nodes were involved from the outset but said there is evidence from pathology that it had previously responded to treatment… there seems to be quite a bit of controversy with different people telling me different things but im happy with the treatment plan at the mo so just going with it and hoping that it blast it all.
hope i havent worried you… this was just my personal experience hunny and all our diagnosis and treatments do seem a little different from each other… just hope you can get the treatment you need.
Love lulu xxxx
hi all , sorry not been in touch tina thanks for pm , i have been in hospital all week had drain for for each lung in total 4 litres fluid (the one drained last week had refilled)so tired then discharged from hosp my dear brother drove me to manchester christe for start of gem/carbo well after 2 hours got there and consultant floored me was feeling tired out and ha then went into his speach s scan shows more progression so quickly and fluid build up so quick my tnbc ia a very aggressive one that he thinks treatment resistant so did i want to take treatment as he didnt give it much hope,…i was devastated and just cried and cried, he said progression to the other breast numerous lymph nodes chest wall and lumps in lining of lungs ,bone progression, liver clear ,brain clear and internal lungs clear …anyway i said i have to give treatment ago fopr my kids(am now in tears at comp)but it was like someone had just written me off,he then said take the chanceand have treatment and that he may have been too heavy on me …really?so i began the gem/carbo feeling numb am just in total pj day lazy mode have no interest in anything or people visiting meaning well, just want my babies around me (as big as they are ,thay are my life and my everything but i really feel my days are numbered, cant even think of xmas and i love it so…sorry to be on downer girls i think of you all i truly do may god give us all strength for this but i feel mine ebbing away sadly…love and hugs to you all xxxx