My appt went very well yesterday, he began by asking how I felt & any problems - just my expanding waistline. I do NOT have bone mets. As said last October I have a ‘condition’ in the bone with a long name possibly due to the severe sepsis I had 3 years ago. The tumour markers are down to 600 - started at 1,800 last October. He is in no rush to resume chemo & will wait until they go up, then probably go back on Cap.
If fluid in abdomen increases they will drain it.See him again in 6 - 8 weeks & meanwhile to enjoy myself!! :smileyhappy: :smileyhappy:
Hi everyone, so glad there is a triple negative thread on here, although it took me a while to find it!
I just wondered if there is any ongoing treatment we triple negatives can have to try and ‘keep things at bay’? I mean in the way others have herceptin for years. Or is it just chemo/radiotherapy then wait and see? Sorry if this is a very naïve question -I’m still quite new to this. xx
I saw my nice Onc. on Monday & he was delighted to tell me that the tumour markers have remained at 600, we know there is a long way to go but as I feel & look well I won’t be going back on Cap. just yet. He said to return in 6 weeks then asked if I was having a holiday - got a break planned in the Lake District at that time so he will see me in 5 weeks. To have CT scan prior to this.
I have been enjoying myself at various celebrations - a 50th anniversary & the following day a 60th anniversary; been to see Dawn French in her own show and been out here & there visiting museums & friends.
Hi ladies. Im currently coming to the end of my first 2 weeks on Cape for lung mets. At a previous meeting with Onc he had said that my treatment would be Cape and probably hormone therapy when stable. But when I went 2 weeks ago for my first prescription he said it would be just Cape. I asked about the hormones and he said that because I was only weakly positive he didn’t think hormones would be of much benefit.
Wouldn’t I have something like an AI as I’m post menopausal? Feel a bit scared if I’m not going to have anything in between.
Also…can you have a glass of wine while on Cape? My son is taking us all out to a beautiful restaurant for Sunday lunch this weekend and wondered if I could have a glass with my meal?
Love to all:heart:
Bev xxx
Tracey hope the wedding goes ok and youre feeling well for it. Thanks Helen for the info…its a bit scary when u dont know how long you’ll respond to the chemo isn’t it? I suppose we all want an infinite amount of years xxx
Just thought I would introduce myself to to this site. I was diagnosed wih stage 3 ER positive BC in feb 2001 and had a mastectomy followed by 8 sessions of FEC and then Radiotheraoy for 4 weeks. I then went on Tamoxifen for 5 years followed by Femara for a further 2 years. In Sept 2013 I was mis-diagnosed with chest wall Lymphedema which in Oct 2103 it turned out to be a local recurrence which had morphed into TNBC…hello!! I had chest wall resection and reconstruction in Jan 2014 which is massive surgery and mentally I never recovered from it. In Feb 2014 I was admitted to a Macmillan Unit in Sheffield where I live and in March they sent me for an MRI Brain Scan which showed up a tumour and I was fortunate to be given Gamma Knife treatment. Afer that I slowly came back to my normal self mentally and was discharged in the middle of April. In July we managed to get to Ibiza for 11nights and had a wonderful holiday. Two days after returning home I saw Onc for some scan results and was told there are traces of cancer in 3 vertabrae and in my liver so I was started on Capecitabine immediately, then prompted by my wonderful partner Onc arranged for a further MRI Brain scan and low and behold another small tumour had appeared. So in November I once again had the Gamma Knife procedure and wait to see if the Chemo is working apparently Chemo does not work on the brain as there is a barrier around it for protection. Anyway after a very CRAP year I remain strong and positive and am learning to live with secondary BC. It is very insperational to read other ladies story on this site. Keep up the fight girls and don’t let cancer win. Sorry for long scroll but even that has made me feel better lol:womanwink:
Welcome bazcas! Great that you’ve found us but sorry you’ve had such a rough time of it. You’re so lucky that you were able to have the gamma knife too…we don’t have a Cyber knife here in Wales!
Please post as often or as little as you like. The support is amazing from the other ladies. Although a lot of the time (you’ll soon come to realise) we’re as mad as a box of frogs…eh Helen???
Love to instill some humour into our down days! ?
Keep positive. We’re here when you need us ?
Love and hugz… …xxxxxxxx
Welcome Bazcas, you’ve had a terrible year and I hope that 2015 is easier on you. It’s good to come on here to find things out and get support, but it doesn’t all have to be cancer related which I find is a godsend as it takes up so much of our valuable time anyway.
See you at our Christmas Eve party!
LD x
As you say ‘daft as brushes’. I refer to my tumour as ‘the alien in my abdomen’. The last Consultant overseeing me on the ward asked if I had more defined pain from the ‘alien’ or laparotomy scar!! I refer to the leaking ascites as ‘alien juice’ although it was frightening when they turned me on my side the day after op and bed got soaked.
There were some dark days when I thought it had got me, especially when my heart went into AF & was on hourly obs, and frequent heart scans as phosphate level was very low. Drinking fizzy medication was horrific as I had acid reflux at same time - connected with having the stoma. Eventually they did it by infusions.
Hi lovely ladies hope you all managed to have a peaceful Christmas. I had lovely time with my special OH and family. Now looking forward to N.Years eve, when we will be celebrating at a local hotel with family and friends. I am sure this topic will appear on other threads but just wanted to say I have just finished my 5th cycel of Capecitabine and fortunately without too many se’s, I take 1 spoonful of Manuka 15+ honey daily and swear by it, does anyone else feel the same.
Wishing you all a peaceful New Year…keep strong:womanhappy:
Hey lulu great to hear from you and to read such an encouraging post! Always thinking of you. …glad you enjoyed xmas and hope that wee grandson of yours is keeping you going! Youve been through such a lot…yet still smiling and i cant believe the number of treatment options there’s been for you. Clearly somethings working for you even though there’s been loads of surgery. Keep it up lovely lady and keep us posted just when you can. Enjoy New Year if you can (Im not a big fan but will watch the fireworks on tv) !!
Will be raising a glass to you and all the other lovely ladies on here xxxxxxx
My onc said it’s the wbrt that breaks down the bbb. So if you haven’t had whole brain rads then that’s prob what he is referring to. Capecitebine is one of the very few chemos that can break though the bbb. But again it’s not 100% think may work in less than 50% of cases… Or perhaps even less!
Maybe your onc doesn’t want you getting your hopes up that it’s gonna work so works on the the pessimistic view.
Anyway I’ve still not come to a decision yet regarding the pros and cons of stereo versus surgery.
Hi lovely ladies, I have just been for results of a CT scan and after 6 lots of Capecitabine the cancer is stable…yeah:cathappy::cathappy: Hope you are all doing ok and Lulu am thinking about you for 27th, good luck!!!
Hi ladies, I’ve only just registered to this forum and pleased to see a TNBC thread as so far haven’t come across a single other TN person. Been battling solidly for 18 months now; surgery, chemo, surgery, radio the dx with brain mets and had more surgery and now on Chemo. Ended up in local hospital over the weekend with chest pain and just been told I have fluid round the heart, not sure what this means hoping to get to see my onc team this week. Anyone else had anything similar?
Hi tillymint. Yes my primary was TNBC in 2005 no nodes. Had lumpectomy chemo and rads. Then new primary 2009 in same spot but weakly positive so not recurrence of first. Put on tamoxifen after having mastectomy…
Then in aug 2013 dx with secondaries in right lung. Started on chemo july 05. Stopped responding after 3 months. Have since been put on 3 others. Last 2 didnt work either so hoping this one Vinorelbine may work. My onc says i prob have the type of cancer that just doesn’t respond to any chemo.
I think i only have 1 option left after this.
But in march this year was also dx with brain mets…4.
So had WBR which ended on 15 april but I’m still suffering the awful fatigue from the radiotherapy. …i still feel as lousy now as i did 4 weeks ago. Hoping it’ll start to pass soon .
Hope your treatment goes well.
Love bev xxxx
Hello ladies, its great to find this thread finally. I have felt very alone being TN but having read through this thread have felt very positive. I was diagnosed with TNBC last august with both primary and secondaries in liver and bones. Have been on taxol and avastin then EC both did not work and am now on carboplatin. hoping next scans will show some improvement - could really do with some good news. Is there anyone out there with a similar situation?
