TNBC & Inflammatory

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Hello, I was diagnosed with triple negative inflammatory breast cancer in February. I have been having 12 weekly paclitaxol, with carboplatin and prembrolizumab every 3 weeks. I am due to start 4 rounds of EC on the 11th June before I have surgery. So far I’ve experienced minimal side effects so I’m slightly worried about changing to EC and what that experience will be for me. I have also been cold capping and have experienced minimal hair loss to date. I think my hair is breaking rather than falling out as I have no bald patches.

I’ve had a good response to chemo so far that my lump has shrunk from 7cm to 3cm. I met with my surgeon this week who confirmed to me that I would be having a mastectomy for surgery, and that sadly a lumpectomy isn’t an option due to my cancer being inflammatory. I wasn’t fully prepared for this and hoped I would be given a choice, but I accept the outcome. My problem is the appointment also reminded me of my inflammatory diagnosis, which has bought back a lot of fear because there is little information about the outcome of inflammatory patients and survival rates. Let alone being triple negative too, I feel I’ve drawn 2 bad luck cards. I’m being told this is curable and treatable by my breast nurses but I’m petrified that this will return within the next few years. Does anyone have any information on inflammatory breast cancer and it not being all doom and gloom? Or success stories? I have been doing well to stay positive so far but this week has shaken me a bit and I’m struggling to keep afloat x

  • Hi  I think many of us are concerned about recurrence but I completely understand in your case there are few examples to have strong data,  I wondered if it was worth you having a chat with the lovely folks here at Macmillan who might have access to more information and expertise. You can call them on 0800 808 0000.  Best wishes 

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  • Hi. I’m sorry I had a different type but just wanted to let you know that just because the data isn’t there it doesn’t mean it will be a bad outcome. 

    I had an oncotype test which revealed I had a 12% chance of distant recurrence. When we asked the oncologist what that came down to with chemo she said that data was not available so you can interpret that how you wish. We either worry about it coming back or we remain positive that we will be ok for as long as possible and if we are not treatments are evolving all the time. My auntie died of breast cancer circa 10 years ago but there are so many more drugs available now than there was then. 

    I think ultimately no one knows for sure if it will return.

    Also as for you saying triple negative is more aggressive my oncologist seemed to infer that the grade was worse than the type so please don’t get caught up on the type of cancer. Also my oncologist said that triple negative was the only type of breast cancer that they gave immunotherapy too and that is a fantastic treatment.  

  • Hi I also have TNBC and starting treatment soon but was just wondering what is immunotherapy treatment?

  • Immunotherapy is a drug given by IV infusion like chemo. It boosts your own immune system to fight cancer cells. It’s a fairly new treatment but has fantastic results for triple negative especially paired with chemo. 

    I would definitely ask about it if it has not been mentioned to you. 

  • Thank you for your reply I will certainly ask about it when I’m at pre assessment tmrw.

  • Hi

    I have TNBC and have had Pembrolizumab immunatherapy treatment along with chemo.  The treatment is very good and has excellent results.  I have finished 24 chemo treatments and having a lumpectomy tomorrow.  My immunatherapy treatment will continue every 6 weeks x 5 from July.  

    Wishing you well.

  • Hi everyone just quick question but did you have any side effects from the Pembrolizumab. I have been just diagnosed with tnbc high grade and due to start chemo next week. The oncologist wasn’t very impressed  about the pembrolizmab drug and she has experience a lot of young patients have reactions to it but some did react well. Suppose as this is new I am trying to find out more about it from people whom have experienced it. 

  • I have TNBC don't know what to do have chemo tablet 

    I hope will get better as doctor can't do operation 

    I'm  in stress 

    love you all 

  • I had this treatment for my stage 3 TNBC. Was hospitalised for 5 weeks due to DRESS syndrome and couldn’t continue with the treatment or chemo.

    but have had complete response. Still have issues now and weekly reviews with the immunotherapy team. I was told it’s rare for such a reaction tho. Wish you the best. 

  • Hello, I have just completed my first 12 weeks of pax/carbo/prembro. I am 33, and did suffer with bone pain on a couple of the pembro weeks, but I think my body has adjusted as the weeks with pembro are becoming slightly easier. No more intense bone pain, just muscle aches which are also a side effect of the chemo anyway. I had my first EC cycle this week and have continued with pembro. My oncologist has said the benefits of immunotherapy assisting my immune system to recognise and attack cancer cells are worth it and that immunotherapy works well for TNBC in particular. My initial lump was biggest at 7cm, and a recent halfway through chemo ultrasound has put it at 3cm so I’m grateful my treatment plan is going well currently. I couldn’t say whether the halfway result would be the same with/with the pembro though. Wishing you all the best, I hope my experience so far has helped x