Hi lovley ladies, this is my first time posting so not sure if I’m doing it right! I have just been told I have secondaries in my bones and liver. I had tnbc diagnosed in august 2015 only 1 out of 34 lymph nodes involved, finished a course of tc chemo in feb’15, so I’m a little shocked it’s come back so quickly! Just started gemcarb chemo and wondering if anyone going through a similar treatment and how’s it going?
Hi,Jane, sorry you are joining us but you are very welcome. We are a very friendly lot and have a wealth of experience among us. We support each other on good or bad days. AND we have a laugh too.
I’m TNBC spine,ribs,pelvics,liver ,lungs,chest nodes. I’m on Eribulin at the moment.
We all tend to hang out on bone mets thread regardless of mets (we now have a cyber cafe!lol)
Please drop in anytime you need support,rant,cry or a huge hug we all give them willingly.
Huge hugs coming your way,Helen xxxxxx
Hi Jane…
Welcome to the forum… Tho I’m so sorry you have found yourself here…
I’ve not been here long myself… Mets to nodes and poss skin mets now… In the waiting room at the mo… Wondering what treatment plan they have in store for me!!
I know of some ladies who have had gem carb with excellent results and I’m sure they will be along shortly to offer you advice…
I too am TNBC…
Take care and ask anything you need to on these forums… I have been given loads of support and advice…
((((Hugs)))))
Corinne xxxx
Cyber cafe how exciting! Thanks I will look on the thread. I’m afraid I’m a bit hopeless with technology so this is a nervous start! Have you had your mets long? It just seems a real whirlwind to me at the moment. I seem to have gone from been fairly active to almost house bound in 2 weeks(.just out of hospital yesterday.) Think I may have to have radiotherapy to my spine so I’m hoping it will help pain and mobility.I feel 100 at the moment…real age 50!
Thanks for replying!
Thanks Corinne so great to talk to you all. Have you got some treatment planned now? Hope so and good luck with it! .I’m determined to kick this cancer again so good to hear you know of people on the same regime as my chemo doing ok!
Hugs xxx
Hi jane
My oncology appt today… So I should know more by tonight and hopefully out of the waiting room… Just hope no nasty surprises…
Have a good day
C xx
Hi 
Sorry about your recent diagnosis, it’s really quite a shock to take in so you will be needing lots of {{{{ hugs }}}}
I’ve had nodal mets since 2008 and at the time had no idea you could live so long with secondaries, but have only recently come onto these forums.
Welcome, and hugs
Carrot
Hi Helen, I first posted on liver mets but have just found out I also have lung and bone, really knocked me for six. Have met with Onc who mentioned the chemo you are currently on, any positives would be appreciated x
Sorry Helen its Epirubicin he mentioned, anyone have any info xx
Hello all.
It’s my first post - Hoping it lands somewhere useful!
I’ve been looking for a while for a suitable group.
I too had TNBC Primary but at 6cm that on pathology was 8cm, tip to tip.
Lymph nodes affected on biopsy. All grade 3.
Dec 15 2015
T- FEC pre surgery. Partial response in breast.
None in lymphs.
MRM with Anx lymph clearance.
LI lymph invasion on pathology.
5/15 grossly affected lymph.
Rads for 21 days up to supra clavicular, chest wall and under arm.
Now at 10% Lymphoedema in wrist.
Advanced diagnosis 17 Nov 2016
Liver mets and bone.
Currently on cycle 4 Cape.
After good results from CTScan post cycle 3.
Bloods are good. So far. Some reduction in size and amount of ‘extensive’ liver mets. Hurrah!
I’ve changed everything in my life! Pre difficult Christmas with close family. All paperwork of Power of Attorney done - fear of brain mets next.
Except I still smoke! Please don’t judge me. I can’t handle that right now. I gave up drinking and I used to love that.
Too stressed to give up now. Tried vaping pre surgery for one month. The jury is still out on nicotine replacements anyway eh?
Have had Palmar Plantar pretty much from first cycle. Manageable.
Only me to worry about! No kids. Never was a mother type - too selfish - liked my work and my partner his too.
And lots of friends, local and distant, work and social plus family support -both mom and dad in good health. Dad 80. Oh, plus FaceBook! I joined in diagnosis to document my journey and cekvrste my partners life after 5 years of grief.
I’m off work. And paid, I’m very lucky. I only went back for 6 weeks post radiotherapy. Then newly diagnosed Advanced distant mets. I think it never actually left!
It moved to uni, made friends and is now partying!
No other side effects having radically changed diet. No spicy or peppery or over fatty foods. Small meals often. Real food. Lots of seeds and gluten free porridge. Small portion of meat and more fish. I drink Veg juice and eat real fruit. Mad on steroids - reduced to 1 daily as hyper Manic. I have an underlying anxiety disorder, diagnosed by psychiatrist and managed by GP for 8 years and on a drug daily - only 20mg Citalopram.
Reduced dose of steroid to 1 daily and Xeloda by 20% to help this cycle with red peeling and blistered feet. Well managed until this weekend!
Mets to neck, spine, 2 ribs, right pelvis and chest lymphs.
My biggest fear is brain mets and loss of independence and control. Spinal compression another big fear.
No kids!
Lost my OH 6 years ago.
Living alone and happily now.
Recently did some Psychotherapy. 5 weeks. Stopped now.
Insomnia - no sleep for two full nights.
Not surprisingly I had ‘an Existential Crisis’
Now left toe flesh is darkening - blood/necrosis?
Awaiting oncologist advice tomorrow afternoon.
Any thoughts? On the bloody purplish left toe from Palmer Plantar I assume - news greatly received!
Good luck all. It can be quite random this TNBC eh?
I’m hoping for 2 years - prepared for whatever! Each day is a gift now and an added bonus!
Best. Lynn
23rd March was a year since diagnosis of TNBC. Saw my oncologist March 2nd for a check up. I was referred for brain MRI, body CT & full body bone scan after mentioning my headaches, appetite, aches & pains.
Had results on Thursday - there are 2 areas of concern. My spine & a legion on my liver. I now have 2 MRI’s booked to confirm if the cancer has spread.
I can’t think straight & I am petrified of what the next results will bring ??
Hello Moomin
I like you have TNBC, first diagnosed in May 2013. Just had my results from my CT scan…only to find that there is a hot spot to my sternum. Waiting for my appointment for a biopsy.
I’m with you about being scared…?? sending you a big hug ? and let me know how you get on.
Teresa xx
Hi ladies in on my 3rd cycle of gemcarbo going ok for node secondary fingers crossed this works and they don’t go on the move only small just worried there’s nothing else would stay on cemo if I could x triple negative x