well had mri of cervical spine and brachial plexus (bib area ???) and bone scan tomorrow , then wait for results love to all, good luck tina with your onc on tues xxxx
Hi Rachel been thinking of you today hope u are coping ok? Any idea when u will get results from these scans? Hope ur not left to sweat for 2long. I’m really nervous about what lies ahead- neck lumps have freaked me out especially coz they are on my ‘good’ side. Praying for a miracle here 
hope everyone is ok very quiet on here the last few days xx
hi tina, dont know when i will get results so will just wait, am so sorry you are freaked out but maybe they are not sinister with being on good side but i know how you feel they just pop up from nowhere the little s**** am thinking of you loads and really pray you will have good results when you get scan hugs to you and everyone xxxxwill keep you posted x
Hi Ladies
Hope your all doing ok today
I had 12th chemo on thurs avastin/taxol, but cos of infection under nails of few fingers I’m back on antibiotics this week again, so chemo has been canc for thurs. Got appt to see onc next week to see how they are before any more chemo. Looks like I may lose about 6 nails. Tips of fingers v sore n tender too.
On the plus side, my nose bleeds are easing.
Tina and Rachel been thinking of you both over the weekend, fingers crossed n sending you good wishes n hugs too.
Sadie hope chemo goes well today
Hi to both Jo’s hope all ok
Big hello to all other ladies , hope your doing ok
Hugs
Sandra xx
Hi All -
Thought I would post before I start loosing the plot with chemo brain and hjiopjen ndkhiswo wjkcnhjkld nmks!!! (I think it may be toooo late!!)
Sandra - OH OOOW!!! Sounds horrid! My nails lifted from the top down, but they are still attached! I do hope the antibiotics work soon! Sore hands really interfere with life! I am sorry you are suffering! Glad the nose bleeds are better though!
FQueen / Rachel - So much thinking of you and your results! Hugs (Xx Xx Xx)
LLassie - Glad you have some energy and a good holiday! Any Guiness drunk?? The suprise party was fab - she had no idea!! Her face was a picture - A wonderful memory to have.
Tina - OH PANTS!!! What a horrid situation - I dont need to tell you that though!! So, what can I say to help?? Feel a bit useless - but I hope hugs and smiles help a little bit. (Xx Xx Xx) 
Keep us up to date!
A BIG hello to everyone else!
I feel good and was really shocked today when my bloods (neutrophils and platlets) were too low for Carboplatin number 2. They re did them and neutrophils went up to 1.1!! My registrar said she still would not treat me but my Onc said she would (all via nurses - did not actually SEE a Dr!!). So, if you dont like the answer - ask someone else!!! They have reduced chemo by 20% and given it to me today. I hope to go to France for 4 days in 13 days time (Any tips where to go Tina?) so i really really need bloods to be OK by then. Any tips??? My son suggested I eat healthy food and rest lots - bless him!! I think I will follow his advice though! I am worried about a 20% drop but understand this is better than delays in treatment.
Hugs to all you wonderful ladies! Thank you for being there!
Sadie Xx Xx
Hi Ladies
Rachel- thinking of you hun. Hope todays scan went ok and your results are ready soon. Hope your lovely grand daughter is distracting you as much as poss xx
Sandra- good to hear from you The nail problem sounds nasty I hope it improves soon. I Had probs with my nails on taxotere but only had 3 cycles so it didnt have chance to get too bad. Lost a few toenails and finger nails were awful. Hopefully the chemo is being just as destructive with your mets!! Fingers crossed for you xx
Sadie- sorry to hear your bloods are low I had low platelets twice but felt ok. Was it your platelets that were low? Apparently carbo is renowned for it. I had lots of unexplained bruises lol! I sure you will be fine for your france trip. Sounds fab! I always felt ok and pretty much back to normal by day 10-12. I wouldnt worry too much about infection as apparently its less common with carbo than some other chemos (my onc said thats why they dont give out the neulasta jabs whilst on carbo coz its kinder on the blood counts). WE literally went to eurodisney so cant really advise you on places to go but Im sure you will have a great adventure Fingers crossed the se’s are kinder to you this cycle xx
Hello to all the other ladies reading too- please update us xx
Well its d-day tomorrow. Feeling really nervous about the new progression. Very nervous about the prospect of a pet scan too but it is what I want. Just terrified it’ll show allsorts we didnt know about. Not sure if me or my family could take that sort of news to be honest. Its my birthday this weekend and a gang of us are going to the races so I will try to put this nightmare out of my mind as much as possible and enjoy myself. Ive decided to drink nothing but champagne on the day lol- since I really didnt expect to be here for this birthday! We were hoping to get away in early nov to tenerife but realistically I dont think that’ll happen as Im bound to back on the chemo wagon once progression is confirmed. So glad I never booked it last week when I found a good deal! On a more positive note, got over £500 today off our simply health policy, thanks to Linda off our thread. I was unaware I could claim for day patient treatments (like chemo and rads) but she made me aware of this aspect of the policy. So Thanks Linda if you are reading this !! Im awaiting a response off our private healthcare who are trying to get out of forking out. Funny how they never mentioned the fact I could claim for staying with the NHS isnt it?!?
Right better get my little man to bed. His dad is away on business this week in London so its just us two for a few days…
Love to everyone
Tina xxx
hi all hope your all ok sorry tina to hear your news ie lumps hope the scan goes ok and its not as bad as u exspect sadie i was always ok on carb never had any probs we are all of to paris tomorrow for the day be great we got to up at 3 ugh train goes 525 but it will be fun gd luck to all will await your results tc laura xx
Hi All
I am so sorry sandra re nails - sounds horrid. I had 18 taxol but never lost nails. I have split fingers at ends on a few which are hard to unite again !!
Hope results Tina are not as you fear
Glad to hear laura off on holiday
I hope sadie ses this cycle much less and bloods pick up. I juice 2-3 x day and think helps on chemo but no evidence just works for me in past.
I hope rachel your scan results okay and if you need funding for more treatment you get it.
d
Sorry to anyone I missed.
I had horrid week as got scan results yesterday which shocked me and Oncologist as think was fairly confidant were good as response to taxol after cycle 2 so good. Seems not and is on the move again in liver but lungs and bones stable and nodes. Surprisingly new node on collarbone not on Ct but clearly visible. I kind of sensed taxol not working and had liver pain month ago so guess was starting up again.
Went to marsden today and they suggested same treatment so looks like capecitabine for me. Were discussing carboplatin but think tablet form as been on IV chemo for 12 of 16 months now. I am so dissappointed as think options after are carboplatin and eribulin and pray there are more but not sure want to know.
Am being tested for two trials one for androgen and one for some other factor and is 20-30 % chance TN disease has these but is not for now as think only phase 2 trial so capecitabine first. apparently some on for 1-2 years but I have not ever come across anyone on this long term.
Not sure if any of you have tumour markers but I dont and blood and liver function normal so scary that no way of telling except CTs.
Was desperate last night as so want to get boys to school but need 3.5 years for that. Praying for us all a new treatment comes out. He did say they are bringing new drugs out all the time so we have to all hope.
love jo ( hope 15 )
oh jo ,am so sorry you didnt get good results but good that your lungs and bones are clear, this disease is such a sneaky one tnbc certainly is a nasty buggar,heres hoping the cape works wonders for you ,i am dreading my results am sure its progressing but will keep you posted sending you massive hugs rachel xxxx
Hi Ladies please excuse my gatecrashing…I’m stage 4 and I’m chemo only from now on but I’m not trip neg. I just wanted to let Jo know there are many stage 4 women who have been on Capecitabine for years…I’ve been on continuous cycles since April 2008 and a fellow forum user, stage 4, has had 8 + years with Cap. While we are not trip negs I thought, I hope, this post may be helpful in some small way.
I hope Capecitabine works really well for you…xx
Hey ladies
saw my onc yesterday she didn’t seem concerned about new nodes in neck. She said they’re tiny + we know there is a high possibility there is lots of small deposits of diease knocking round. She still suggested holding off chemo for now but we agreed on a compromise, which was to rescan in a few weeks. We decided against the petscan for now but I’ll ne having a ct of neck down the 1st week of nov. I’m going to go with more chemo- will have another go at the carbo. She also offered me a trial of piclitaxol with avastin + a new agent but will save that option for later. Felt really emotional after my appt- but thankfully had a meet up planned so we ended up going 4tea + polishing off several bottles of vino!! Gona try + stop panicking now until my scan…
Jo I’m sorry to read ur scan results showed progression I understand u are anxious about ur babies I feel the same. I pray for his sake he has lots of quality time with his mummy. Best of luck with capecitabine- you have had a tough time + I hope the se’s are mild but the results are brilliant for u! Sounds like ur veins need a break + ur hair will start to regrow on cap. Don’t give up hope you have LOTS of options left xx
sadie- thanks for the pm hope the se’s this time are easier 4u + ur bloods get back to normal in time for your Paris trip xx
rachel- thinking of you+ keeping everything crossed for your scan results xx
love to everyone, battery goin on phone so better submit post b4 I lose it!!
Tina xx
hey tina,your onc seems not too worried so thats good but think you will feel better when youve had a scan so am hoping for you it will be good results take care love rachel xxx
Hello everyone, i post sometimes for advice for and about my friend Heather, who has had ist cancer and mx 3yrs ago, a year clear, then skin reccurence that spread to ibs in other breast, nodes in lung, chest, back and a mass on her ovary. all tnbc, she has had all nodes removed from under arms. She was in lots of pain, morphine based painkillers, and given a very poor prognosis, maybe only months. She started Taxol/avastin a little later than Sadie but is still able to take it having had minimum side effects AND her scan results on tues NO EVIDENCE OF DISEASE!! Onc says, yes it prob will come back , but then said who knows… Just wanted to share a good news story with everyone, and wish you all the very best in everything xxxxxxx
Hi Bestfriend
Thanks for coming on and sharing Heathers FANTASTIC news!! I remember she was having a terrible time and you were really worried about her- its great to hear the chemo has had such an amazing effect. Long may it continue to work for her. What a lovely friend you are
Tina x
Hi best friend
Thanks for posting that good news re Heather - they have put me back to the beginning of the first cycle of avastin tax ZA ie 2 months written off so fingers crossed it works for me too, ineresting to hear she had min ses I’m constantly v v tired
Jo x
Brilliant news, Best friend! Hi to all on here!
Sarah xxx
Hi
Thank Rachel and Tina and thank you to Belinda for the encouraging post. HAving got my head around more chemo as in tablets capecitabine all changed as on scan liver lesion near a vein so I am to go on carboplatin and gemcitabine and maybe avastin if funded too. I start next week 2 of 3 weeks. Is this the same as you sadie two weeks in row with week off ?
Im told se minimal and same as weekly taxol so will see.
AM glad Tina your aoot went well and hope rachel your results are not as bad as you fear.
love jo
Hi best friend,
That’s brilliant news, for Heather, thanks for sharing it with us, hope your going to have a big celebration nite out.
Hi to all ladies
Hope your all feeling “ok” today
Sandra xx
hi bestfriend …thats fantastic am so pleased for heather hugs xxx
Jo, yes Heather has been tired, and some loss of feeling in her fingers, and has a ‘down’ day a couple of days after chemo, but is working 3 days a week, and has kept her hair with use of cold cap, no nose bleeds with the avastin and amazingly generally very well. she came back to work against docs orders as we work in a special ed school, a lot of opportunities for infection!! She started with a couple of mornings and built it up. So yes she has had side effects but mercifully few. again wishing everyone well, Kim