Hurrah for Breast Cancer Now! I asked if they could create a special area for TNBC sufferers because I found it rather dispiriting to read posts from people who have the hormone positive varieties of breast cancer for which there are so many more effective treatments. I’m very pleased for them, of course I am but reading of treatments that give them months if not years of extra life I found rather upsetting. Almost to the point of giving up using the website altogether.
(Sacituzumab Govitecan), released earlier this year is the first drug specific for TNBC. I was “lucky” to be offered it before NICE approved it for use by the NHS. I can’t say I’ve found it a walk in the park and certainly not any sort of miracle. It’s holding things stable which is better than progression but my quality of life is not brilliant as fatigue, breathlessness and peripheral neuropathy limit every day activities. I’d love to hear of others experience of this drug.
I’m hoping this board will be the place where experiences can be shared, information on upcoming trials and any news of relevant research shared. I’ve done my fair share of ranting and moaning on other boards on this website so feel free to do that too.
Thank you for such a good suggestion. I do hope it engenders activity because you’re right, we TNers do need a space of our own where we don’t have to worry about raining on others’ parades as they celebrate their ?th anniversary of being declared stable. I just hope it’s given its own slot with options, not just one continuous thread. I’m glad to hear everything is stable. I’m fighting off a viral chest infection (I have had a cough once in my entire life - I got the bunged up nose, my brother the coughs lol) but I don’t feel unwell apart from the wheezy cough. I got a week off Cape to enable me to fight it off naturally but all that did was give me a huge psychological boost - yay, a week off chemo - and a dash of mental clarity, so now I’m back on the chemo with antibiotics added to the mix. Sadly, the capsules are the size given to horses so I’ve covered the bed in white powder in a pathetic attempt to dispense the amocycillin into smaller capsules. I’d make a rubbish drug dealer!!
It’s good to hear that Trodelvy has helped. I’m impressed by your giving it its chemical name. Can you pronounce it??? I’m beginning to recognise it in writing and it trips off my oncologist’s tongue as if he’s saying ‘aspirin’ so I’m in awe off anyone who can get their mouth round those 2 words!! I think at first we saw it as the miracle drug but I’ve been warned so often by my oncologist (who seems to think I’m eager to change, just because I was so vehement in my efforts to get the right decision from NICE) that it’s a harsh treatment that I’m less eager to try it and I still plod along on Cape. Like you, in fact almost exactly as you describe yourself, the quality of life isn’t great. Maybe if I were younger, I’d get on with it better. Would a change to Trodelvy make me feel worse? I fear so. But that’s jumping the gun.
My current position is that my oncologist is perplexed as my bc isn’t behaving as expected. When I asked if he meant the TN, he nodded and explained that basically there were 2 types of TN - the one that gets diagnosed and nothing will stop it from running its course and the one that responds to treatment after treatment. “And then there’s yours.” There’s no doubt he did not expect capecitabine to work for so long and he believes it would be unwise not to stick with it as long as I can. Apparently it’s like my body fights the bc, then runs out of energy and gives in so it spreads a little bit, then my body rallies round and it and Cape fight the b**gers again. I’m not going to argue. I’ll stick with Cape as long as it’s containing the bc. As you say, holding things stable, which is better than progression. All I’d ask for is a better quality of life - the week without mental fug was so revealing. But I’d be glad to have more stamina and regain some energy.
So, there are now 3 types of TN and I am a source of intrigue among the oncologists. It might explain why, the few times my oncologist has not been available, I get assigned to one of the top nobs - I’m a freak show, and happy to be so for now. Anyone else defying the odds?
Anyway, well done for pressing for this. Let’s hope fellow TNers spot it and join us. Wishing you continued success with Trodelvy (brave woman),
So pleased to find this Forum for us Triple Negative Ladies . I too struggle reading posts from all the ladies with Hormone receptive treatment as it just isn’t relevant and can make you quite depressed if you think too much about it. I am still quite a newby, having been diagnosed in June and just finishing a 12 weekly cycle of Paclitaxel. I feel really good, apart from hair loss so I am hoping my scans will show that my mets are stable (bone and skin). I think I am still coming to terms with the idea of ‘living with cancer’ but trying to find the positives and making the most of life,
My primary breast cancer (ILC with lymph node involvement) in 2019 was ER+ and I had mastectomy, chemotherapy and radiotherapy then. I always assumed that if it came back it would still be ER+, but it has returned this year as triple negative; 4 separate tumours spread across my lymph nodes and muscle in my chest. One of the tumours is in a mediastinal lymph node next to my artery.
I am currently on weekly paclitaxel + carboplatin, after 4 rounds of EC, to try and shrink the tumours, but after 3 months of chemo the original swelling doesn’t seem to have shrunk at all. I am also having pembroluzimab every 3 weeks. I’ll have a PET scan after chemo to see if there’s any change.
I am not sure what other treatment options might be available when I finish the current chemo in January. I am told operations are not an option, that it is incurable, so it is a case of trying to shrink or stabilise it. My oncologist said it was particularly aggressive and fast growing, so I really hope that there is something to stop it in its tracks for as long as possible.
I’m 52 and have teenage children still at home, so I want to live as long as possible for them (as well as me of course!).
Hi everyone. It’s great to have a new section for TNBC. Unfortunately it’s rather buried in the site so may not get spotted and picked up by many of us TNBCers. Definitely worth passing on the word, as I share the views that a lot of what I read from particularly ER+ people isn’t that relevant
As a brief intro to me, I am mid 60s and was diagnosed in February 22 with what was thought to be early stage TNBC following a routine mammogram. I had a WLE and SLNB in March. 18mm tumour, clear margins, 4 lymph nodes removed and clear, but vascular invasion in the tumour site. Then followed 4 cycles of EC chemo, 12 weeks of Paclitaxel, and 5 days of radiotherapy.
I had a CT scan just after I switched to Paclitaxel for something else. Results took 7 weeks to come back but included the surprising finding of a cancerous deposit on my liver and an ‘adrenal incidentaloma’. A subsequent PET-CT and MRI showed some shrinkage of the liver tumour between scans and also confirmed that it’s isolated. I am therefore undergoing microwave ablation of it on 13 December. The theory is it was probably already there when I had breast surgery, but they didn’t scan me so don’t have a baseline. The hope is that the response to Paclitaxel will also have worked on any micrometastases they couldn’t pick up on the scans. I have also completed a 24 hour urine test to see what’s going on with the adrenal tumour. Whilst it’s thought to be benign, it may need to be removed if it’s generating hormones. I find out about that next week.
Meanwhile, the secondary deposit led them to get my original tumour tested for PD-L1, and it was positive, which means I am eligible for Pembrolizumab (Keytruda). The plan is to scan me quarterly and if (or more likely when) a further secondary develops, put me on Pembrolizumab alongside more chemo. For anyone not familiar with PD-L1 (which is short for the delightfully named programmed death ligand), it acts as a sort of invisibility shield. The immune system doesn’t notice it, so it continues to divide at pace, and is a reason why many TNBC cancers are so aggressive Pembrolizumab works by turning off the invisibility shield so the immune system can work alongside the chemo.
Hi there I came on line to post about starting Trodelvy in OUH today and found this thread. It’s good to see an area for TNBC and I have read some of your posts over time and today.
I find myself turning to BCN when going through change and uncertainty. Starting Trodelvy today felt like very challenging even though it’s my 7th line of chemo.
I’m patient 1 for my Oncologist though we’ve discussed it over the 12+ months I’ve been on Eribulin. It was this time of year in 2012 when I found my Primary and 2018 when I had 2 lobes of my Liver removed following the secondary diagnosis. Chemo was always planned after that but it was on the scan done following my 6 week healing period. I did chemo then ablation I had a couple of clear 3months scans but then it was back in a number of leisions including a big one near my livers blood supply. This was just as the pandemic was starting and I did a trial of CT7001. That didn’t help me. I’ve been on one chemo or another since. All help for a while but as we know it’s persistent.
My year on Eribulin was pretty positive from a cancer perspective but challenging as a mum. I got two weeks holiday sun over last Christmas with my daughter (now 21). Early in Jan I realised she was struggling in Uni. Very impacted by anticipated grief, unable to imagine living without me and behind with her work was giving her suicidal thoughts. Helping her has been a priority and I am pleased to say she finished her work in August. Ironically she couldn’t/wouldn’t have done it without my practical and emotional help. I’d hoped she would grow independent through uni but that didn’t happen so much. She saw more of me because off covid and the time she managed away with no support from her tutor, she was isolated, flatlined, lacking self worth and she hid it even over our Christmas break. My instinct kicked in, I got her to open up.
I count my blessings that in Sept we got news she’d passed
I am proud of her that she opened up to me and a hospice counsellor
She now a completely unrelated job
Her two elder brothers have got closer to support her
My middle son split from a 9 year relationship late last year. He really needed me and has with support from friends and family taken lots of action to build a new live in a new town closer to sixth form friends.
As for me while on Eribulin after the mid August deadline was met, I managed 5 days in France with my oldest school friend, Two weeks in Scotland with my 3 grown up kids, eldest partner and min. 5 days in Tuscany with daughter, a long weekend in the lakes with friends and a week on the Algarve with my Partner. I only deffered Eribulin treatment one week to fit this in.
I’ve managed to be a patient advocate for the BCN Service Pledge and am now starting a drug I campaigned for.
It’s not been an easy transition starting today as I’m anticipating Trodelvy will be harder. I’m hopeful that it will hold the cancer which had grown on my October scan. I’m hopeful that as we get my dose right my quality of life won’t be to much of an adjustment. I was frightened this morning. I was moved to tears as a chemo nurse I’ve come to know and trust showed me empathy and kindness. His reassurance got me through the premeds which we had to slow before the 3 hour infusion. I used the cold cap too as have managed to grow a Bob since my hair came back from Vinorelbine in Jan 21. Fingers crossed my next hair appointment won’t be a shave…
It occurred to me today after wheeling my equipment with me for a wee half way through treatment that the 10 years I’ve spent with Cancer getting cut out, zapped with various treatments is a 6th of my life but a half or third of my childrens. It’s no wonder they all show signs of the the slow trauma of this TNBC continually taking more of their mum.
I hope so much that Trodelvy or what follows helps many at some point and we all get more good times. Mostly it breaks my heart to see younger women in the support group who fear this disease taking them swiftly when they attend for the first time. The common take away is that you can “live”. We try not to let it take away who we are.
I’m preparing for the worst of times with day 8 cycle 2 being 22/12 (Family warned Christmas is low key) I’m hoping for the the best
Hello everyone- I’m so pleased to have found this thread, I can’t tell you!
I’ve lived on and off with bc since I was 38, when my kids were 11 and 9. Had Mx and tamoxifen for 5 years and did well. It recurred when I was 50 and kids were in early 20s. I had chemo (FEC), ovarian ablation and then 5 years of hormone therapy.
This time, I’m 64, my kids are in their mid 30s, and I have 3 grandchildren. I don’t underestimate how lucky I’ve been so far. I have mets in both lungs. I’ve been breathless for a year and been back and forth, finally telling a GP I was worried about lung mets and had an Xray which showed up nothing.
Then I found a lump in my ’good’ breast and some small nodules in the other which proved to be tnbc. A scan then showed the mets but only in lungs, thankfully.
I’ve been fairly sanguine in the weeks since dx in June but this weekend it struck me that I’m in a different position entirely and it has knocked me for 6.
I have loads to learn - currently about to start second cycle of cape and I’m looking forward to meeting my onc in person- had only 1 telephone appointment so far.
I’m finding that reading your posts is going to be a big help in focusing my questions for her when we meet.
I was all at sea, now I have s lifeboat- thanks, all of you…
Welcome Monica to the lovely world of TNBC. It’s a lot better understood these days, particularly in understanding it’s not a homogeneous thing defined by what it’s not, but a variety of different cancers that do test negative for those 3 common receptors, but also in some cases test positive for other things that can be targeted. There have been new treatments authorised within the last year or so, and others are in trial. I joked with my oncologist that her task was to keep me alive until better treatments emerged. Wishing you all the best with your treatment.
I was first diagnosed with what was thought to be early stage TNBC in Feb 22 via a routine mammogram, but it had already leaked via my bloodstream. A secondary was discovered coincidentally when I was being scanned for something else last August. I have therefore been living with metastatic TNBC for about a year. My current treatment is Pembrolizumab and NAB-Paclitaxel. I am currently well.
was first diagnosed in 2017 at 38 years old with right sided TNBC (not in the family and Genetic testing was negative), I had lumpectomy, chemotherapy (FEC-T), total axillary clearance then radiotherapy. I went in for fat transfer reconstruction surgery at the beginning of this year and at the follow up I showed the Dr a swelling in my armpit on the opposite side - he said it was just fat. In May I was chasing up my mammogram that I had been promised yearly until I am 50. No one got back to me but in the meantime I felt a hard lump in the nipple on the same side. I was seen within the 2 week pathway and the mammogram was clear - luckily I had an ultrasound too which also showed the nipple was clear but that I had inflamed lymph nodes on the left side which were biopsied. I had a CT scan which showed many swollen lymphs in my chest and neck and another biopsy was finally taken from the nipple. Came back as stage 4 secondary TNBC. After waiting 3 weeks it came back that the hoped for pembrolizumab was not suitable for my cancer so I am now on weekly Atezolizumab and Abraxane (Nab-Paclitaxel)
I’m halfway through my third cycle with scans planned at the end of my fourth cycle.
Its good to hear from others that they are living well with Stage 4
Thank you so much. Like you said, the majority of breast cancers seem to be hormone related. I was always confused about was made mine grow. Since I will never know, I hope that I can share any experiences that I have had with other lsdies/gents on this forum. I had lumpectomy, sugery and radiotherapy. I have been left with lymphoma in my breast and keep getting infections in and around that area, which can be very frustrating. Has anyone else experienced this?
I started sacituzumab/govitecan in May this year after being on Atezolizumab/paclitaxel which initially worked well for a number of months. Yes the side effects are not very pleasant & even on a reduced dose of 70% the side effects are just as bad. I shall be glad to know if this treatment is really working when I have my next scan in a couple of weeks.
Hi Donna
I am new to this thread but have had breast cancer twice in two years , first was Triple positive on the right, chemo surgery radiotherapy Herceptin Zometa and hormone blockers. They took out 30 lymph nodes so I get a swollen arm sometimes and the breast swells too. I think radiotherapy causes a bit of inflammation for a long time.
Now I have TNBC on the left, which I had chemo for then surgery and radiotherapy and am on mop up Cape now for 8 cycles. Im exhausted and don’t know if treatment has worked or not. They can’t tell at this stage. I’ve been on treatment for 37 months and I am tired.
Hi Nancy, that’s a rubbish time you have been through. I hope this is the last time it recurs. It is my worry that it might come back, I do try not yo worry though. Keep your chin up, you’re doing great. X
Thanks Donna that is very kind of you. They are pretty sure this isn’t a recurrence but an unrelated second cancer. I don’t have any gene defects so I am just a freak of nature. I will be okay eventually.
Nancy
Hi @Stoneacre I am being gradually pulled back to something close to normal kidney function following my Pembrolizumab related immune attack on my kidneys. Just got to complete the steroid wean. Meanwhile the cancer is under control for now
. I too struggle reading posts from all the ladies with Hormone receptive treatment as it just isn’t relevant and can make you quite depressed if you think too much about it. I am still quite a newby, having been diagnosed in June and just finishing a 12 weekly cycle of Paclitaxel. I feel really good, apart from hair loss so I am hoping my scans will show that my mets are stable (bone and skin). I think I am still coming to terms with the idea of ‘living with cancer’ but trying to find the positives and making the most of life,