15-08-2016 07:57 PM
Hi Sarah, sorry cant really help with your query....no one ever mentioned size when they told me i had pleural and bone mets and to be honest, i darent ask.
EJ...i know how you feel. I have been through the same treatments of you except vinorelbine and i have had weekly taxol which i dont think you mentioned, so that may be an option. Like you, i will try anything.
Please let me know how you get on and shout up[ if yo hear of any new treatements. xx
12-08-2016 02:56 PM
hi , was recently told in May that I was stable after my ct scan . I recently went to GP about increased pain around lung area, had pleurodesis via vats last November, I asked if he had last ct report which he printed out for me. Reading the report I was shocked to see that it said there was an increase in size and number of pleural and lung mets largest being 10mm ( this was 6mm in feb 2016) also state I have a dominant metastasis in the left lung which I had never been told about.
I have contaced my oncologists secretary and asked for copies of previous scans. Also just had a ct scan and get the results on 5th sept.
Is is there a certain growth that is considered stable ? What size of met is considered large?
my GP felt that it was likely I would need chemo again. I finished gem/carbo in feb 2016.
any advice welcome
11-08-2016 02:23 PM
11-08-2016 01:18 PM
Diane, we all understand your anxieties and are here for you. Please let us know how you get on.
Would be lovely to hear from all my TN friends...please let me know how you all are and any news on treatments, etc. Love to all. x
04-08-2016 04:56 PM
03-08-2016 08:58 PM
03-08-2016 08:33 PM
11-07-2016 12:03 AM
I know what you mean Blanna, if only they could just do that xx I e always found if you need to rant there's someone on forum to give support and be a sounding board too xx
03-07-2016 12:23 AM
I'm very much in the same situation as you all, I'm still coming to terms with it coming back and so fast. I sometimes just want them to open me up, sod the risk and just get them out. But I know that won't happen.
02-07-2016 08:38 AM
Thank you ladies, I've been fairly ok up to now, I think it's waiting for the scan and with one lot of treatment coming to a end, you sort of start thinking what's next.....perhaps that's just going to be enjoying life for a bit with some luck xx thank you your support means a lot xx
02-07-2016 06:51 AM
Welcome aboard. I know tnbc feels like an extra kick to the shins to go along with an already devastating diagnosis but there are still a lot of treatments out there and I think we are sometimes more likely to get drugs fund drugs - I seem to have had a fair number! ! You'll find lots of support on here however you are feeling.
30-06-2016 01:08 PM
not sure i can be of much help but at least i can understand exactly how you feel about being triple negative. I started out in 2011 with ER+, PR+ HER2- invasive lobular cancer and after having evrything going, was diagnosed with sbc in 2014 (evetually after 5 months misdiagnosis). It ppaently then mutateed to tn (without me being told) which really shook me as i realised it wiped a lot of treatments of my plan. Since then i have pulmonary embolism, 2 pleural effusions and now also have mets in pleura/bones. I am currently on carboplatin (Onc said to try a single agent as both this and gem very toxic) but no one seems to be willing to talk about the next step. I know there are few options left for me but i just feel like its all so matter-of -fact...
I have been trying to get on to trials but no one will consider you if there are still treatments to try and i just worry that when that time comes i'll be too ill to go on it or there wont be a suitable trial.
As i said, i'm not much help in the positivity stakes but i'm alsways here for you to rant and rave at, have a cry or just offer a cyber -hug.
28-06-2016 08:33 PM
I'm new to this thread! I was diagnosed with tnbc in July 2013, had 8 months of back to back treatments then and was fine for a further two years! In February of this year, I started feeling stitch type pain on my left side which was continuous ( had felt that intermittently in the same place a few weeks before diagnosis in 2013) a chest x-Ray showed a shadow in the bottom of the lung and CT showed it to be a 21mm mass! A PET scan showed that to be 28mm x 16mm and a further 4 areas ( 2 more in the same lung, one just outside and a node on the ligament between the liver and stomach). To cut a long story short I've been on Gem/Carbo since then and finished a few weeks ago. Mid point PET showed good response and now waiting for end of treatment scan then a break. Most of what I've read on tnbc with secondaries is quite bleak and in April my friend died who had the same disease as me! I really feel like I need to here some positive stories of people who have had the secondaries for quite some time and they're being controlled please. Don't get me wrong I'm not naive and I know what a horrible disease this can be, but just feel I need to here some positivity xx nice to find a thread of similar people xxx
17-06-2016 01:06 PM
17-06-2016 01:02 PM
Thanks for that info Carolyn...thats the scariest thing for me going from er+ to TN and having several treatments wiped off the list, that there are very few options left. Lets hope they get going on this new thing very quickly.x
14-06-2016 02:26 PM
08-06-2016 12:05 PM
Hi sorry I haven't been on here for a while. Having a lot of building work done at home! Yes it seems like we have been on a similar path! I am still on Eribulin (since December) and it's working...fingers crossed it continues for a while. It makes me feel like I have no energy and feel out of sorts but I have recently had my dose decreased by 30% so it's a bit better. I don't know anything about immunotherapy so would be interested to hear if you find anything out. I have been referred for genetic testing, not sure if that is the same test you have had? Take care xx
08-06-2016 10:45 AM
08-06-2016 12:02 AM
26-05-2016 12:54 PM
Spudgirl, just wanted to reiterate everything everyone has said. We are sorry you have had to join us but hope you will find this forum helpful...even if its to have a rant and a scream. We are all with you on the daughter front....we would all do anything not to put our children through this. Dont be hard an yourself and try to rest p whenever possible.Good luck with the move and let us know when you are settled and have atreatment plan. xx