Good news Laura, hope you have a good sleep and hope the se’s stay away!!
Hey everyone just noticed this thread, dont know whether i can jump in, i am tripple negative, dx in December last year with grade 3, ha lumpectomy, clear margins but out of 18 lymph nodes removed 2 were infected so thats why chemo. Fec-T -had 3 FEC and yesterday had First Tax. No Se’s on Tax so far but am told it takes a few days, but enjoying not being sick like the FEC made me, it was truly bad some times with the fatigue and chemical taste/smell. My main fear was that it had spread, i had CT scan and was told it had not spread but not sent for any more scans, i read of PET/MRI scans so im thinking how do they know not spread if just done the CT scan. They said the chemo is to prevent recurrance and i have my first check up 1st August with the Consultant who operated on me Jan this year. Love and hugs to you all, Shar xxxx
Hi Laura
Really pleased your first lot of chemo went ok - albeit a very long and tiring day. Although I get a time slot and am always straight in, I still rule the day out as a ‘hospital day’, that way I don’t stress if things take time. (Fortunately I’m only a short drive from the hospital)
Take it easy and fingers crossed the SEs are non existent!!
Hi Shar
Just wanted to say hello. I’ve not had FEC only Taxol with avastin and SEs similar to you now - fatigue and horrible taste. Unfortunately it has not stopped me eating - I was hoping to lose a bit of weight!
I can’t really help re the scans - I only had a CT scan and Bone scan - mine unfortunately spread into my neck - but this was found by ultrasound on a rather obvious lump.
I’m sure someone else will be able to say when you get aMRI/PET - I’m still a novive in all this
Take care and hope aeveryone has a good day
Linda
x
Hi Everyone
so pleased to find this thread… Have mets to liver and bones…feeling confused and down as thought everything about my bc seemed to be straightforward…WRONG… Finished 12 x weekly Taxol in February, was feeling quite well, and liver had responded well. On 31/3/11 had a 10 day holiday in Dubai with my friends,(highly recommended) came home feeling looking great then suddenly went into depression, an anti-climax me thinks. The double whammy was that last week woke up feeling sick and bloted. GP finds liver v swollen and me looking a bit yellow(I tell her its my tan lol). Sends me to see oncologist. Last scan in April shows more liver progression and then tells me my previously ER+ PR+ Her2- is now triple neg??? I’m now confused. Has this happened to anyone out there?
The next course of action is to join the chemo merry go round again…ugghhh. It will be daily Xeloda, 2 weeks on and 1 off and still continue with zometa.
Can anyone tell me what to expect on Xeloda, I’ve been told my hair will stay (great as I’ve got a nice thatch on top now)
Other than that I’ve had some reflexology courtesy of our local hospice and am soon to have Indian head massage.
So sorry if I sound like a whingeing whimp…
love and hugs to all…xx
Hi Jane
Winge away!! you have every reason to feel very p***ed off! I am really sorry to hear your news, it must be even more frustratting after responding so well earlier this year.
With regard to changing hormone statuses, my oncologist gave me a bone biopsy after I was diagnosed with secondaries, initially in the bone. I was told that it was not uncommon for the hormone status to change and they wanted to be sure before continuing with hormones. I am still Er+ PR+ and HER2- but at a lower percentage. I have tried Aromasin and Femara and have had progression on these, I have changed to faslodex injections (classed as ‘last chance’ hormones)so after being strongly hormone positive it appears that this is lessening!
I am just coming to the end of a course of complementary therapies at the hospice and have really enjoyed and benefitted from them, hope you enjoy your Indian head message it is lovely.
Hope you get on OK with the Xeloda, sorry I don’t have experience of that yet, but there are a few threads on here exclusively about xeloda.
Take care Nicola
Thanks Nicola
Yes, I too had a bone biopsy but they thought the sample hadn’t been prepared properly in some way, hence the commencement on Femara. Will try to be positive and promise not to whinge…lool
jane xx
Hi All - A bit of catching up to do!
Tina - I hope the calm after the Birthday Storm is OK. I’ve got a CT on Thursday and have asked for it to cover my head too. They were very grumpy about it. I am getting head aches, dizzy and nose bleeds - but think it is chemo related. However, I want to be SURE, so I am pushing for it. I know you have got a scan soon too. Are you pushing for head CT too? Do you know of any reasons why the CT should not inc head - is it dangerous???
Ginny - Welcome and sorry the portcath was so stressful. My hickman line has been a godsend though. Im pleased I went through the initial stress and hope you are too.
Debs - Loved the earring story, thanks for the smile! Hope all is OK!
Hope - Glad you have found this thread! I hope the Taxane is OK. Ive just finished Taxol and Avastin Number 9. I did loose my hair after Taxol Number 3. Not nice but WENT FOR IT as soon as it started to fall out and shaved it off.
Laura - Hope all is OK with the chemo and the side effects never appeared!!
Rachel - I am so sorry it is all so complicated and I hope things are simpler now?
Linda - Spots - Me too!!! Ive had to raid the teenagers bathroom for all sorts of cream! Ive done 9/18 Taxol with Avastin now. The tiredness IS HARD! For two days a week I can do very little. Ive got CT on Thursday to see if it is working and if it is I carry on with Taxol / Avastin, but if not I change to something else! I just believe 100% it is working - there is no other option!!
Shar - I know our paths have crossed on other threads - but welcome to this one! I was told that the CT scan is less detailed and a PET scan is more detailed. My first CT scan was clear and so they sent me for a PET scan to be sure there was not something little hiding! Anyway, I was clear then, but no longer!! So just have CT scans now as the tumors are big enough to see on CT scan! Not sure if this helps??
Jane - Hi!! A question…how did the swollen liver show itself? I am feeling very bloated and hope it is just the weight im putting on!! But also worried about what is goijg on in there! I enjoyed reflexology too - so nice and relaxing! I hope the Xeloda is going ok?
Nicola - Hi! I had a head massage for the first time receintly with no hair!! A different experience!! FAB!!
Im generally doing OK. A bit of scanxiety setting in about Thursday. I hope to get the results the followinjg Monday as have onc app. So, not too long to wait. I think my Mum and OH are coming! I cant choose between the two! I am finding Peripheral Neuropathy getting worse - feet, hands and tongue!!! All feel very numb with pins and needles in my hands and feet. I dont want my hands to get any worse as I am worried about how this will effect everyday stuff!!
Mostly feeling positive - but there are dark moments when I am less positive and I ahve decided i dont want cancer any more!!
Hugs to all
Sadie Xx Xx
Sadie… sounds like you are having a seriously crap time…if it helps to know that others are thinking of you and sending hugs, well here are loads from me xxxxxxxxxxxxxxxxxx and my best friend Heather who is fighting too xxxxxxxxxxxxxxxx
Hi all on here!
Just nipping on to wish everyone all the best and Good Luck to Sadie and Tina for their scans. You both deserve good news.
I’m off on hols tomorrow to Bude for a week - packing a few winter woolies and coats for us! Seeing onc. week after as my bad arm has quite quickly swollen to 62% bigger than other and I’m concerned the lymph mets are growing again. Hope it’ “just” more lymphoedema caused by rads damage. I know it sounds minor, but it’s really started to annoy me -I imagine it becoming hideously swollen like the elephant man! Anyway, all being well with onc., I’ll have bandaging done the week after.
Hope everyone’s half-terms go OK and treatments go smoothly too.
love, Sarah x
Hi girls
great to see some activity on the thread 
Just a quickie from me as I’m full of cold + feel rotten. Had my last carboplatin on weds+ my picc removed, only to wake up with a heavy cold on thurs. By yesterday I could hardly lift my head off the pillow, temp around 38, so called the triage nurse who sent me to a+e. Bloods were ok + they let me come home after some iv paracetamol. Hoping it dOesnt develop into anythin over the bank hol weekend…
Sadie thanks for your post. So sorry to read you’ve been having some nasty se’s and worrying head symptoms also. Good luck for your scan on thurs hopefully it will put your mind at rest. My onc won’t scan my head- played the symptoms right down. I don’t think it’s dangerous- I think they just don’t like to go looking for brain mets as there is so little they can do if they find them. I think they only look if syptoms are severe, otherwise they leave well alone. I can understand this approach to some extent- I think I’d rather not know unless I had to if that makes sense?! My head symptoms have eased +. I’d beeb feeling relatively well until this cold struck. Now I’ve got a pounding sinus headache 
Thinking of you, big (((hugs))) xx
Sarah- sorry to hear about your arm it sounds really swollen. I really hope it’s ‘just’ lymphodema + nothing more sinister. I’m sure they will get you sorted once you get home from your hols. Have a fab time here’s hoping the sunshine makes a reappearance xx
hello to everyone else too would be goid to hear how you are all doing
lots of love
tina xx
Hi All - So, the kids nd I go to the Dentist today. He asks if we are all well and I say - ‘well the kids are but im not great’ nd he replies “you kids pushing your mum into an early grave”. Stunned silence and as you can imagine not sure what to say. So, I gathered my thoughts and told him my cancer status. He looked at me nd told me to keep smiling! I could have HIT HIM but instead had to let him look in my mouth! What a thing to say - he KNEW i had a history of BC and so really should have engaged brain before saying that to the kids!
Anyway - Tina , thoughts nd everything crossed for you tomorrow! How long will they keep you waiting for results?? Hugs and hope you sleep well!
Bestfriend - thanks for your positive thoughts. How is Heather doing? How are YOU??
Sarah - Hope the holiday takes your mind off things, the weather is good nd your arm improves. Thx for your good wishes.
Smiles to all - and visit your Dentist after a glass of wine!
Sadie Xx Xx
Hi everyone
Gingerbud - I hope your cold is clearing up - I really think we should be ‘exempt’ from colds whilst we’re dealing with all this c…p!!
Sadie - Well controlled for not hitting the dentist - I think I might have at least sprayed him with mouthwash!
Good luck with tomorrows scan. I’m on my chemo day today, so might not remember to wish you good luck tomorrow. Please keep us updated.
Hope everyone else is doing Ok. As I’ve had a non existent nights sleep, I’ll probably end up snoring during todays chemo - so if anyone is at my hospital today - I apologise in advance for my oh so loud snoring!
Take care all
Linda
x
Hi ladies
sadie good to read u had had a lovely retail therapy day with ur daughter Shopping always makes us feel better although I must admit I prefer buying for fan now I’m an overweight mono-boobed mess :-S Cant believe your dentist! Bet he felt like an idiot but rightly so!! A few weeks back I was shopping with claire off this thread in monsoon, and I was debating which maxi dress to buy. Some man with his wife said to us ‘get them both, you can’t take ur money with u u know! There’s no pockets in shrouds…!’ His wife said ‘don’t say that they’re only young girls got their whole lives ahead of them, blah blah’. Claire + I were speechless- of all the people to say that to!! The irony! We spared them any embarrassment and just smiled… Anyway, how’s tge headaches etc? U still worried? Good luck for tomorows scan. How long will u wait for results? Xx
linda- I’m still full of cold + quite chesty too now. Horrible sinus headache too but I’m more concerned about my ct today than anything else. Feeling quite pessimistic as I’ve not been my usual self for quite a few weeks now. My results appt with the onc isn’t for a fortnight but I know my bcn will chase the report up for me next week. Were holding fire on booking the holiday until I know what’s going on. Best of luck for todays chemo + hope you get a cheeky nap!! If ur anythin like me you won’t sleep afterwards due to the horrid steroids. Xx
hi to everyone else- margaret, claire, jo, fairy, hope etc x
anyone heard from sandra??
Love to everyone xx
Hi All,
Linda- Im glad Im not the only one who sleeps during chemo. I have a ‘bed’ in one of the examination rooms cos I can’t sit v long after the spinal surgery. So I get a blanket nd snore as soon as the antihistamine goes in!!
Tina - your monsoon experience sounds horrid! If only he had known! You should have wipped your wigs off nd watched his face. Anyway HUGS today!!
Smiles nd hugs to all,
Happy Wednesdays!!!
Sadie Xx Xx
Hi girls,
Sorry for joining after a while.backache stated again so feeling low.just feel like stopping all the treatment.why prolong this agony?
Write to you soon xxx
Hi, oh Neelima you are in a very difficult place, I am so sorry. Do you have someone with you? Could you phone the help line? Hugs.
Sadie Xx Xx
hi all , in my local paper tonight they are claiming that research showing overactive genes cause tnbc and they have targetted the genes and have been successful on mice in preventing the growth of the cancer and there is no reason why this cant go to clinical trials (or words to tht effect)all i can say is whatever it may be its great to hear of a treatment for tn being worked on and whatever it may be god willing i am still around put me down for it!!!it is currently in boston but so good to hear tn mentioned because i never knew of it before my dx, lets hope this can come to something great love rachel x
can i also send love and hugs to neelima xxx
Hi Neelima
I’m sorry to hear that you are having a pretty tough time at the moment. As well as the support you receive from the other users do give the helpline a call and talk to a trained member of staff who will offer you a listening ear. The staff on the helpline are there to offer emotional support as well as practical information. The number is 0808 800 600 and lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes Sam, BCC Facilitator
Hi ladies
nelima- I’m sorry you are feeling so low at the moment. I really hope your team can get your back pain under control + you feel some benefit from the treatments. Where are you upto at the moment? Big hugs xx
sadie- how was the scan? Any news on when results will be etc? Hope your veins behaved better tgan mine did!? Hope you are not too anxious xx
how is everyone else doing?
I’m feeling pretty low at the moment- putting on a brave face as ever but even that’s starting to crumble somewhat. Obviously coming to the end of the chemo + the dreaded ‘scanxiety’ isn’t helping but I think the fact I’ve not been feeling myself for a good few weeks now is scaring me. I really am preparing for bad news off the scan, moreso than before. We are holding off booking our holiday til I know what’s what but all being well (?), we plan to go in a fortnight. I’m struggling to think of anything other than cancer + how things will be at the end + once I’m gone etc. I’m so worried for my hubby, mum + little boy. It’s just agony, I really don’t know how they’re going to get through whatever lies ahead. My boy is just too young to understand + he adores me. my hubby’s family are SH*T + I’m terrified he’ll have no support except for my mum etc, Etc. The guilt is torture.
Sorry I’m just having a very bad day- it’s all getting a bit much. Still can’t quite believe this is happening to me…
Love to all xxx
Gingerbud
I think I was feeling just like you last week - I couldn’t think of anything positive and for the first time I stopped ‘acting brave’. When my friends asked how I was feeling, they got the real version of events, along with lots and lots of tears. They all told me they were glad I’d off loaded - apparently I was wearing them out being so positive!
Probably not much help to you at this moment in time - but what i’m trying to say (albeit very badly) is that we will continue to have both highs and lows and that we musn’t be too hard on ourselves.
I have one more chemo and then its my scan - today I’m positive but try asking me next week and I’ll probably be doom and gloom - we have a right to be scared, we are human after all.
I will do the positive thinking for you this week - but you’ve got to do it for me! (i hope that’s a deal)
Sadie - can you update us yet on your scan?
Nelima - backache is a cow, even without BC, so my heart goes out to you. I’m sending you a ‘gentle’ cyber hug
Linda
x