TNBC with lung mets

Hi

Sorry, haven't any experience of Capecitabine but if you type that into the group search bar it will bring up previous secondary breast messages that mention it that you can browse while you wait a more experienced reply ?

Hope this is of some help for now, G n' J

Thank you, will do!

Newnanny x

Hi Newnanny, I have also recently been diagnosed with secondary TNBC, although mine has spread to several organs. I did 4 cycles of Capecitabine earlier this year but sadly it didn’t stop my cancer spreading. I am now waiting to start chemotherapy and immunotherapy.

One thing I would say is there aren’t many major side effects of Capecitabine. I had a bit of bone pain but this was manageable with pain killers. It’s such a difficult choice though isn’t it? TNBC is a scary cancer to have. You’re not alone and I wish you all the best in whatever treatment you choose. 

Thank you for your message! I'm sorry Cape didn't work for you - that is my worry for me too but it is all I've been offered at the moment due to the high risk of Covid 19. My onc also says that all trials/immunotherapy have been stopped also because of the virus but I don't know if this is just in certain parts of the UK (I am under St Luke's in Guildford)? I just hope that Cape can keep me stable long enough for me to have the opportunity to try something else.  I already feel that my lungs are getting worse so fingers crossed!

I hope you don't have to wait too long to start your new treatment and that it zaps that wretched cancer! I would love to hear how you're getting on - there aren't too many of us TNBC mets ladies about!

Take care and keep safe

Newnanny x

Hi,  

I also have TNBC with lung mets. I had 8 cycles of Capecitabine right after radiotherapy,  but unfortunately it didn't work for me. 

The worst side effect for me was dry, blistering skin on both my hands and feet. I used Udderly Smooth cream, really slathering it on under cotton socks and gloves, and that controlled it. I'd recommend getting the cream in advance so you can use it before the blisters develop. 

Other than that, it was doable. 

I also had 6 cycles if immunotherapy - Pembrolizumab in my case - last year, but that failed too. Pembro does seem to be a wonder drug for many patients, though. It's producing some remarkable results.

I was due to start a new trial just as the lockdown began. My oncologist said all trials are closed to new patients, but those already enrolled are continuing. So, like you, I missed the cut-off. Crap, isn't it?

Hi AP7

Thanks so much for your reply; there seem to be so few of us TNBC mets ladies around it feels like a very lonely place.

So sorry to hear your treatments haven't worked so far.  You're the second person who has told me that Cape didn't work for them which doesn't fill me with much hope!  Do you mind me asking when you were diagnosed and how are you coping with the symptoms if your treatments haven't worked?  At the moment codeine and paracetamol are keeping my cough under control as it was causing me a lot of rib pain but I've already had to increase the dose and I'm only 3 weeks diagnosed so I'm worried what's going to happen if Cape doesn't have any effect and how long before the cancer gets too strong a grip?

Yes it is absolute crap - as if getting TNBC mets isn't scary enough without the horror of Covid 19 now to contend with and the impact it's having on treatment.  What has your oncologist suggested for you now then?

Thank you for the advice about the skin problems - I still have Udderly cream from my primary chemo treatment so will dig it out again! 

love Newnanny xx

Hi again, .

I was initially diagnosed in December 2017. I don't know how quickly TNBC usually grows, but mine was certainly aggressive & spread to include both axial nodes & the internal mammary chain nodes, the latter being inoperable.

My worst problems now stem from what appear to be reactions to the immunotherapy rather than from the cancer, to be honest. I have colitis & severe breathlessness and exhaustion, which have led to me spending much of September, November, January & February in hospital. Outpatient appointments kept turning into emergency treatments and/or admissions. And I've been on too high a dose of steroids for comfort since September. 

Other than that, I just have an irritating cough and some chest pain that usually responds to paracetamol. 

My oncology team don't have any suggestions for me at present. Everything is on hold because of the virus, and my extreme reaction to immunotherapy (if that's what my mystery illness is) will have an impact on future treatment plans. So I'm just managing my symptoms and waiting it out.

Theres an old irish curse "May you live in interesting times." I think we're there!

Hi again AP7,

Thanks for your message.  How awful for you to have had such a bad reaction to immunotherapy and it just shows that it's not the answer for everyone.

My treatment plan has changed.  I took a chance and emailed 3 London specialists over the Easter weeekend without any expectation that I would hear back from anybody before my treatment started today.  However the Professor from Guys contacted my oncologist yesterday and together they have come up with 2 plans.  My oncologist is chasing my PDL1 results and if positive I will start weekly immunotherapy next week at Guys but if negative I will start 3 weekly iv Abraxane at St Lukes in Guildford.  Another Professor from Barts has also agreed with these plans so I think I would be stupid not to give whichever one is suitable a try.  If I do go down the immunotherapy route I just hope I don't have the awful reaction that you have had.  I had already collected my first cycle of Cape yesterday but haven't started taking it but apparently that might still be an option further down the line.

It's just very strange that different experts are recommending different things in the light of Covid 19 isn't it?  Both Guys and Barts say they are treating ladies like us as they would normally and they consider the risk of catching the virus less than doing nothing, so I just have to trust their judgement.  My oncologist is quite now happy too.

Yes we are definitely living in "interesting" times!  I sincerely hope you stay safe and as well as you can be until they offer you more treatment.

love Deb xx

I'm so pleased for you, . It's great that you now have options and that the plans are agreed by several oncologists. That must give you confidence. 

Please don't worry about reacting as I did, if you have immunotherapy. My doctors aren't at all sure that that is the cause of my problems. They just can't find any other cause. 

Whichever route you take, I hope it goes well. Keep me updated, please.

Good luck.

Xx

Hi

i have just been diagnosed with secondary tnbc with mets to my lungs. They found 5 lesions on my lungs when I went  for a chest X-ray for something unrelated. It took a while to confirm it was the breast cancer back as it was an unusual shape and it was at one point diagnosed as a primary lung cancer. However finally got confirmation two weeks ago that it’s the tnbc back. They tested me for the pdl1 but it was negative so only chemo available. 

ive been lucky to get treatment started and I began 12 once a week doses of paclitaxel last Friday. So far no side effects so just got to keep going and then a scan to see if it’s made any difference.  

very hard to be going through this now. I’ve got an 11 and a 15 year old at home and around me all the time. Finding it difficult to get my head round it all  and the fact that I wont see them grow up. 

hope you are coping well with everything and stay safe xxxx