Hi, this is my first post. In my forties with 2 young children. Found a lump in April, cancer diagnosis in May, results of first CT found tumours in my lungs, too small to feel any affects. Just had third round of FEC. im triple neg so believe that although my cancer responds well to chemo (5cm lump has now ‘disappeared’ after first 2 rounds) there isnt much in the way of other drug treatments? I have gone on to a low sat fat diet, very little caffeine. Already have a low bmi and excercise regularly.
Anybody got any advice or ideally some inspiring stories…finding it all a bit grim and would love to hear from people with similar that are living well some years on from diagnosis.
Hi,abilucy,so sorry you are joining us but we are a very friendly,supportive bunch. I’m in my 40s too I was diagnosed with double whammy of primary & mets last June.
I just wanted to say hello and your not alone on here.
Great news the chemo has shrank tumour. A lot of ladies are on cape chemo and stay on it for many years,hopefully they will be along soon to offer some advice.
Feel free to ask us anything,or if you need support or a hug we are always here for that.
Sending you a massive hug,Helen xxxxxx
Hi abilucy…sorry to hear of your dx, I was first dx with triple neg bc in 2005. Had lumpectomy FEC and rads then all ok until 2009 when mammogram picked up another bc in same spot of same breast. This was a new primary er+ this time (weakly pos). Had mastectomy and axillary clearance but all nodes were clear so given an exc prognosis. Had recon in 2011 and felt great then lung mets discovered in may this year.
Started on Capecitabine 1 july for 3 cycles and feeling well and have my first ct scan since starting it, on 27 aug. No side effects yet!
Have a look on the Inspiring Stories thread…its a real eye-opener! Lits of long term survivors on there…very positive ladies with lots of different stories.
New drugs and treatments are being developed constantly, many for TNBC and if one doesnt work for you then your Onc will try another…my onc says it will only be chemo for me even though I’m weakly positive. He didnt seem too perturbed about it.
Hope all goes well for you and sending you big hugs, come on here anytime if you need to ask anything…we’re all here to offer support and advice.
love bev xxxxx
Hello Abilucy I have bone mets and just had a lung met removed mainly to decider if it was definitely BC. It was and also biopsy showed I am now triple negative. It seemed I was originally weakly Er pos so alas chemo only treatment option for me too. I belong to a FB group and there are some ladies on there who are Some years down the line with only chemo options so I’m hanging on to that thought at the moment. It take some getting your head round all this doesn’t it and I still have down days as we all do. But it’s great news that you are responding to the chemo and hopefully it will knock it back for some good time xxxx
Thankyou so much for your responses, so kind of you all. Sounds like you are managing to stay positive regardless and I do feel a bit more positive today.
Bev, hope you get good news from your scan, I’ve got one on Tuesday.
Thankyou againxxx
Good luck with your scan. Will be thinking of you and keeping everything crossed!
Bev xxxx
My first primary in 2005 was TNBC but my second one in 2009 was weakly positive. My lung mets are also only weakly positive so they think they developed from the second one. But at my last clinic appt my Onc said that another Onc could class my mets as negative as they are borderline! He said they are not really one nor the other…typical of me!
So at the moment just on Capecitabine as he doesnt think that hormone therapy would benefit me.
i have also asked about trials but nothing yet available for me. I would love to have a targeted therapy like herceptin too.
good luck to everyone. …love bev xxx
can i just ask … how do you know if your er status has changed? Is it only through a biopsy? If so what happens to make your Onc think to do a biopsy? I read of people’s statuses changing during treatment e.g. suddenly becoming her2 pos when they were neg previously.
Thanks ladies xxx
Thanks desi. Yes i had a bronchoscopy and a biopsy in may when diagnosed. They said then i was weakly positive 3/8. xx
Youre so right desi…its thinking of the children and how theyll be without me starts me off! ?
I just dont want to go…simple as that…and can’t believe its happening to me!
Yes my onc doesnt think hormones will benefit me either and he said 3/8 is neither one thing or the other.
I suppose he doesnt want to waste time trying them.
Im having terrible burning pain in the centre of the chest between the breasts where the mets are. Its so painful. Hoping the docetaxol will sort that out too.
have you experienced anything like that?
Love bev xxx
Hi, just an update. Latest scan showed that tumours in lungs have ‘gone’, best news we could have hoped for and now treatment free until still least next scan.I know Bev has also had some good news recently re chemo working. Just shows, there is hope for us Triple negative ladies. EJ, how are you getting on with Abraxane?
I have 2 small children and I am going to be around for a while, can’t contemplate anything else.
Abi x
Fab news abi, my mums He2+ I know that’s completely different but all good news gives us hope she starts her chemo next week hopefully maybe week after
Fab fab news Abilucy! And just in time for xmas! What chemo were you on and how many rounds did you have? xxx
I’m not triple negative, but hearing good news like yours Abi gives me lots of encouragement and hope.
LD x