Started my chemo 22/3/22 -triple negative

I was just reading a post from a lady whose tumour (triple neg) shrank so much that they changed their mind and she is now due to have a lumpectomy rather than a mastectomy.

Mine is tripple negative, and was playing cat and mouse during chemo. Meaning, it started to shrink, then stopped shrinking, then gave me a scare when it seemed as if it was starting to grow at a rapid rate, for that to be later proved wrong when it turned out it was being measured from a different, misleading angle. In the end, when they finally plucked it out, it turned out to be exactly the same size it was when I was first diagnosed. I atttribute all of this to the fact that scans are sometimes not entirely accurate, and that tumours are not a perfect shape so can appear differently depending on where you are looking from. The doctors are aware of all of this, which I knew even then, but it did not make me worry any less when I thought that the tumour was out of control.

What chemo are you on?

Hi, I’m on 3 cycles of EC then change to 3 off Docetaxel.. that’s my fear that it won’t shrink as for some stories o have reads and I’m having it in my body and the fear if it spreading. Anxious  thank you 

It's sometimes enough to find out about even one case of it spreading to get anxious, let alone when you read a few. Still, the majority of us have good outcomes. I can understand if you say you won't feel much better until the damn thing is taken out, but if you can, try to remind yourself that statistics are on your side. I wish there was a way to reduce the uncertainty we experience and the length of time it can take to get to significant milestones such as past surgery or end of chemo. 

Is your EC every 3 weeks or every 2 weeks?

Yes , just feel there’s so much conflicting advice. As you say I just want it out my body. I’m getting treatment every 3 weeks. Just hope it helps  and there some hope to Geri g back to my life  x

I have just been diagnosed with triple negative and my chemo starts next Friday 1st April. I’m really apprehensive as don’t know what to expect. Do I have the cold cap or don’t I! Are they going to be able to shrink it? Will it spread? So many unknowns and I hate not being in control!!!

I am the same , I had my first treatment on Wednesday, it wasn’t as bad as I imagined . I was scared stuff before I went in. But I had only a sore head at the end off the day- which might have been the cold cap. I started my injections yesterday and  had a sore back and throat and didn’t sleep to well last night. I am still so worried of the un- known . Just finding it all so hard and missing my life x

Hi Diesel46

Welcome to the forum and sorry to hear that you have been diagnosed with triple negative breast cancer. 

Your medical team will do everything in their power to get you better.  Triple negative as a general rule responds well to chemo. I was diagnosed with triple negative in September 2020 and after having chemo, surgery and radiotherapy I am now now cancer free.

Wishing you the best of luck with your treatment when you have it.

Best wishes

Daisy53

Hi, I was diagnosed with triple negative in January but had a lumpectomy before chemo. Although it hadn't spread i am having chemo and due my 2nd EC course on Wednesday. I had a terrible headache for about 7 days on and off and mouth ulcers but have felt great for the last10 days or so. I had the cold cap but started losing my hair yesterday. I have read that the effects are accumulative - how much worse has anyone found the  treatments get? Has anyone lost some hair but not all or is this it now?

Hi I had 3 EC and 3 DC with cold cap. I.kept over 50 percent of my hair. Had it cut in a short bob at the beginning so to reduce the weight but have long pieces to cover the temples where it became sparse.  I lost quite a lot of hair after the second EC but it seemed to grow slowly on the DC. 

As for the treatments I found I learnt to manage the side effects better as I went on and accepted that I needed to rest which I think helped in the long run.

Good luck xx

Thanks Bobbiboo, good to know there's some hope and that's good advice to get it cut shorter. I also don't feel so worried about my next treatment, thank you xx