everyone

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Hi

I hope everyone is keeping well Relaxed

My name is Lou and I'm 37 recently diagnosed with grade 3 tnbc localised in situ with no lymph node involvment, and I'm so glad I've found this forum!

I was beginning to feel very alone! 

I had my second chemo yesterday and feeling OK. I'm on pembro + carbo week 1 followed by 2 weeks of taxol on repeat for 12 weeks then once every 3 weeks for 4 cycles. The plan is surgery after, just waiting on genetic testing to see if brca positive then I'll be offered mastectomy followed by targeted parp inhibitors. 

 I was told initually I could have the cool cap only to find out on the day that due to type of chemo plan it won't work so I've  had to get around that fact i'm going to lose all my hair, but wig is on order!

Only thing I've struggled with so far is filgrastim injections which has given me terrible anxiety. I can cope with the pains but the psychological effects are another level!

For the three days that I took them last week I had a feeling of impending doom, I didnt sleep, my heart was poinding and I was constantly having to calm mysef as I was on the verge of a panic attack. Everytime I closed my eyes I had visions and  terrible thoughts that would jolt me awake. It took me til sunday midday to come out of it.

When I told the nurse yesterday I burst into tears...felt like such an idiot!!! Thankfully they told me there are other options and it will be discussed with the oncologist prior to seeing him this Saturday so fingers crossed I can try something else.

Has anyone else has a similar experience? I've been told to try again tomorrow and to call in if I have the same thing starting but I'm dreading it!

Have a great day! 

XxX

  • Hi, I’ve just finished chemo. I had 12 weekly of paclitaxel and carboplatin. I also had pembro every 3 weeks. Then I had EC and pembro every 3 weeks. So had 16 treatments in total. Fingers crossed for your genetic testing. 

    I didn’t cold cap.  I bought loads of beanie hats and a wig which I ended up getting trimmed by a lady who specialised in cutting wigs.  It looks really good now and feels more me.  My hair has started to grow back now but it’s very white/grey! It was brown before but that’s because I had my roots done every 8 weeks! 

    In regards to the injections, could your Bc nurse arrange for a district nurse to come and do them or could you go to your gp surgery for a nurse to do them? Not everyone will feel comfortable doing themselves. Hopefully they can come up with a solution. 

    I did take 2 paracetamol and an antihistamine an hour before doing the injection and I never had any pain. 

  • Hi there,

    And thanks for your reply.

    How do you feel now you've completed chemo?

    Well I figured out what might have been making me feel so terrible and it seems to be the antihistamines I was given. Anyway I injected thursday and everything was fine until I came out in a rash on my neck so I was told to take piriton instead. Neck rash gone and I've since done another injection and been fine. 

    Saw my oncologist on Saturday and he thinks I'm defo having some sort of interaction with filgrastim and questioned why I was taking it every week? He said I should only have them following immunotherapy and chemo combined and not every week so he's changed the treatment plan.

    How often did you have to inject? 

  • Hi

    when I was in weekly chemo (3 weekly immuno) I had to do the injections for three days each week. When I moved over to three weekly treatment I had injections to do for 7 days following treatment. 
    Glad you got the rash sorted out, sometimes it feels like it’s one thing after another. 

  • Yes, i'm on same treatment plan so find it strange he's changed it. If I am having some sort of reaction why not try me on another rather than cut it back to just the week I have immuno combined?  Surely that'll put me at risk? I am going to ask when I got for treatment next week just to be 100% sure that's the plan.

    It certainly does, I feel like every twinge or feeling is a new symptom of something...

    What the plan for you now? 

    B W,

    Lou

  • Yes definitely worth double checking. Is it the nurses who gave you the injections? Strange the oncologist questioned why you were having the injections every week. Hopefully you will get to find out when you should be having them. 
    I’m waiting on a meeting this week with my surgeon to find out how much my “lump” has shrunk and what surgery I will need.