Hello. I need some positivity or reassurance from anyone who’s been in similar.
I had TNBC in 2022, full pathological response after chemo, lumpectomy and radiotherapy.
it’s now back and very aggressive. It’s in lymph nodes in my arm pit and my under breast bone, and up to collar bone. There’s one lymph node near my collar bone / neck where surgery isn’t an option so I have to rely on chemo and immunotherapy, if that doesn’t work I’m not curable. I also havd suspicious activity in my other arm pit.
I’m so panicked and struggling to eat or sleep. If I was told it’s curable I can just crack on with treatment (no start date yet) but I can’t cope with the limbo and I’m spiraling.
I have a very supportive family, but they can’t give me real reassurance
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Hi @florencesnowball.
I am sorry you haven’t had a response yet and to hear what you’re going through, it is not a surprise that you feel afraid of the unknown.
I am sure someone will be able to share their experience with you and positive thoughts soon. In the meantime please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000. Sometimes it helps to just have a chat.
Sending our love,
Chloe
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Hi Florence
I hope my story can give you a bit of reassurance. Like you I was diagnosed with TNBC in 2022 and underwent surgery, chemo and radiotherapy. During chemotherapy I developed infected diverticulitis and ended up as an emergency admission to the oncology wards. From there I had a CT scan “just in case”. It transpired I had secondary cancer in my liver. It hadn’t been in my nodes but had likely travelled through blood. They thought I was probably de-novo metastatic. Further testing of my original tumour and the new one in my liver established my cancer was PD-L1 positive so could be treated with the immunotherapy drug Pembrolizumab. I am guessing that’s what you are about to be treated with? I had this, plus more chemo in 2023 and achieved remission. I have had no evidence of cancer since despite being classed as incurable. I have regular scans and am not on any treatment. The journey wasn’t easy as the immunotherapy led to issues that needed to be addressed with high dose steroids. This immunotherapy can be an absolute game changer. Wishing you all the best.
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Thank you so much for replying, it’s honestly the first bit of reassurance I’ve had all month. It really means a lot to me. Did you do anything extra along with your treatment to make it more likely to work? I’ll be having 12 weeks of carb / plax with immunotherapy every third week (the one you mentioned) then 12 weeks of ec and immunotherapy then a masectomy- so a very intense treatment plan, but at least they’re not messing about
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Hi ! I had a similar diagnosis last August . MTNBC in my liver ,spleen and various lymph nodes including in my neck .
I started on Abraxane and Pembrolizamud( immunotherapy) in September
Had a scan just before Christmas and I’ve had ‘an excellent response ‘
Lymph nodes now normal size and the two liver tumours and the spleen tumour have all shrunk .
Minimal side effects ,no nausea just constipation after each treatment but I get ahead of that now with Laxido
Fatigue!! Yes but a small price to pay
So treatable but incurable - I try to stay positive,the more time I can survive the more research may result in breakthroughs in treatment lines
It’s incredibly difficult emotionally,I can be ok then fear and sadness washes over me !
Hope you do well too
Viv
X
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I’ve been feeling the same, just so incredibly sad that it’s hard to imagine feeling normal! I got a call today to say I start treatment next week so really hoping it will work wonders on me.
If you have Instagram look up hope heals, she was given 12 months to live - 11 years ago! And shares lots of tips
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No - I had already had 4 rounds of EC and 4 (12 weeks) of Paclitaxel for my primary cancer before everything was confirmed. Switched to NAB-Paclitaxel alongside the pembro. Pembro every 3 weeks and the NAB-Paclitaxel every 3 weeks in 4. I had had 6 loads of pembro when my routine blood test showed very high creatinine. It transpired the immunotherapy had hit my kidneys and thyroid. Later on I found I had lung damage too. I stopped treatment at that point but an MRI showed the larger tumour had shrunk to around a seventh of its size and the satellites had disappeared. My smaller tumour had also shrunk. They left me for 3 months to see what happened. No change at all in the tumours but despite it probably just being scar tissue left, an interventional radiologist ablated the debris. The ablation was in Feb 24 and I am still clear.
The clinical trial that established Pembro for metastatic cancer had a cohort that achieved a significant response or indeed pcr. Nearly all of that cohort were still clear at the end of the follow up period (54 months). When it works for someone it often works very well. Adverse events can happen, usually when it is working well. I needed 9:months of high dose steroids to recover my kidneys but they did recover.
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Hi !
I’ve just read your post ,I’m on this immunotherapy for MTNBC . I hadn’t realised how successful it can be !
Very encouraging to find out how long people are surviving on this treatment.
I’ve been on it plus Abraxane for four months and so far so good - tolerating it well .
I’m so pleased for you that despite it causing adverse effects it got on top of the cancer .
All the best
Viv
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Yes I think it can be a game changer. Hope it works for you.