Treatment plan and how long until you started?

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Hi all. I was referred to the urgent breast screening on the 21st of August by my GP and was officially diagnosed with TNBC on the 13th of September. I had some scans (MRI and PET/CT) done and then saw the oncologist on the 1st of October. I was told I was going to have a 12 week treatment of Carboplatin and Paclitaxel (C every 3 weeks and P every week) followed by 12 weeks of EC every 3 weeks. That seemed like quite a lot to me. Anyway, she said treatment should start in about 2 weeks and I have been gearing myself up for it. Today the hospital phoned me to say that treatment will only start on the 30th of October which is 4 weeks after I have seen the oncologist and more than 62 days since my doctor's urgent referral. I'm really stressed about this now as I know delays can be really detrimental to cancer patients, but I don't know whether I am overly emotional and overreacting or whether this really is a long delay. Not really sure what I can do about it. How long did it take for everyone else?

  • Hello, 

    You’ve been given the same treatment plan as myself. I’m going to have my second cycle of EC next week. 

    Have you researched (on the relevant websites!) about TNBC? 

    I saw my oncologist on 11th June and started treatment on 17th June. 
    My ‘lump’ was measured at approx 6cm. 

    How big is your lump? 
    Did you question why so long before treatment starts? If not, I would do. Maybe speak to your breast care nurse as well and be vocal about your anxieties etc. xx

  • Thanks Missy. I haven't spoken to anyone yet, but will definitely ask the oncologist and the BC nurse. It may just be that the hospital here in Oxford is very busy, but the oncologist said she was going to push for a urgent place. That's why I was a little shocked to find out it will be 4 weeks until the treatment starts. My lump is smaller, 2.3cm so maybe they don't think it's that urgent, but you never know with these things and in my mind I can just imagine the damn thing growing bigger by the day. How did you find the PC in the first round and how does it compare to EC?

  • Yes I would definitely ask. I completely understand your anxiety and I would be the same. 
    My mammogram measured at 3.6cm but then ct scan 5 weeks later was around 6cm so I have no idea really. 

    Pac and carbo was eventful for myself but remember everyone is different. 
    Hair loss started happening around cycle 2. I did the cold cap - have you decided what you’re thinking with it? 

    I suffered quite a bit with loose stools - they give me Imodium. 

    I also began having immunotherapy and on the first cycle it all went a bit wild with my liver so they stopped immunotherapy. 
    However I still had issues so they think (by the end!) that it was actually pac causing issues. 

    Get used to having bloods done. Don’t be freaked out if you’re delayed - most people have something along their journey. 

    Are you having a PICC line fitted?

    In the end, I had 2 infusions omitted and 1 delay. 

    Eat lots of magnesium and potassium - if you’re low in these, it can make you feel rubbish. Again, speaking from experience of what not to do Joy 

    I have only had one infusion of EC. Again, not great. Had neutropenic sepsis and MRSA so was in hospital. 
    Got my second infusion next week so hoping my dose is lowered so it doesn’t affect my blood cells as much.

    Everyone is different. 
    They should have run through all potential side effects with you at consultation?Xx

  • It just all feels so overwhelming at the moment. I am going to try the cold cap and see how it goes. Dis it work for you to a degree? I haven’t even started and already feel fed up. I have been relatively positive (for me at least) these last couple of weeks, but today I really feel down in the dumps. I hate not being in control of my own life. 

    I am having a PICC line fitted on the morning of my first treatment. I was told to get blood tests done at GP, but they didn’t say what for. Hopefully I’ll get a letter or something. How did you end up with sepsis? Just from an infection?

    I’m a bit worried about anaemia as I normally struggle with that. It seems there is a long list of possible side effects so I’m bound to get some of those. Not something to look forward to. Anyways, thank you for all your replies, I really appreciate it. Xx

  • It is overwhelming. 
    Lives have been turned upside down in a short space of time. 
    One minute we are living life, next everything has stopped because of this disease. 

    I don’t like not being in control of my life either but I hope it gets easier for you like it has for me. I don’t feel like I’ve accepted it, but I am managing it. 

    Yes cold cap has worked to a degree. Lots of shredding still and I do have a few bald patches but I cover those up by wearing my hair in a bobble. 
    It is my chubby cheeks that gives something away Joy 

    PICC lines are great for ease. Have treatment through them and take blood through them. They will run everything through with you when you have it fitted. 

    Okay if you don’t hear anything about bloods, chase it. Before you have chemo every week, you’ll have bloods done to make sure they’re at a level of safety. They check all sorts. 

    So it wasn’t sepsis how people know it. It’s where neurofils dropped to an unsafe level and I picked up some kind of fever which drained me more. 

    Don’t worry about something that hasn’t happened yet. Some people don’t get any side effects or minimal side effects. 

    I hope you’re feeling better today and staying positive is a must in this situation.

    Do you have people supporting you? Partner, family members, friends etc xx

  • Hi Missy, I’m feeling slightly better today thanks. Am at an open day for my daughter who is due to go to uni next year. I do have a lot of support which I’m very thankful for. My husband will take me to my treatments and my kids are teenagers so can cope on their own. Work has also been great so far and I will be taking the first 12 weeks off as I’m not sure how I will cope with the weekly paclitaxel. I have been told that it is easy to get infections so I think I would need to be mindful of that. Did you also get immunotherapy? My dr is still contemplating whether she should give me that as I have some auto immune skin conditions. I am trying to just accept things as they come, but the 4 week waiting has really thrown me off balance. Good luck with your next round of EC. Xx

  • Lovely! Enjoy your day today! It will take your mind off things hopefully. 

    Take each day as it comes. 

    I have a lift to and from treatments as I never know how I’m going to feel so I agree with that. 

    My daughter is 12 so she can fend for herself majority of the time and I also have my partner.

    This will be a ‘new routine’ but one which is hopefully short lived.

    Weekly treatment is intense but it’s good because you’re monitored weekly. Don’t rush back to work. 
    I have been signed off for the whole of my chemo due to my job being high infection. 

    You do have to be careful with PICC line as open wound. I have a district nurse which comes and changes the dressing every week and you can’t get it wet. You can buy a sleeve to cover it off Amazon - they should tell you all this when you get it fitted. 

    I started off with immunotherapy but had a reaction to it (they think!) even though the effects still happened after it stopped so they now think it was pac.
    We will never know Joy  but it got stopped after the first infusion. 
    I think it’s quite common for people to react to the immuno as I’ve read and heard before. 

    Sounds like you’re kinda prepared as much as you can be Purple heart you will be okay. 
    This is just a bump in the road…xx