About to start chemo

Hi Corner Cottage

im sorry to hear of your diagnosis. I was diagnosed with stage 2 TNBC last October, also not in lymph nodes, 39mm.  I have just finished 3 months of immunotherapy plus carboplatin and paclitaxel and had my first dose of Immunotherapy with EC last Thursday- cycle 5 of 8 planned cycles. I have been cold capping and it has worked well - there’s been some thinning but only I notice. The first month or so was the worst while my body adjusted to the drugs - I had headaches, constipation and dizziness. It took me a while to realise I needed to take three sachets a day of the laxatives they gave me in the first week of each three weekly cycle and that I didn’t need the anti sickness medication in weeks 2 & 3 when I was only having Paclitaxel. After that my stomach settled down. Other than that my muscles feel weaker and I get fatigued but I’ve gradually been able to build up my daily walks. Oh and I was pointed in the direction of some breast cancer charities that off online nutrition and exercise which have helped me to positive: Penny Brohn and Future Dreams. Hopefully some of this might be helpful to you. All the best for your treatment. 

Hi thank you so much for all the info..much appreciated, interesting about the cold cap as has heard many different opinions and was ready to brave the shave!

mine is the size of an olive (as the doctor said) about 2cm ..obviously am worried about the start of chemo but has to be done and reading the side effects is like a horror story!

also worried what they will find in the MRI Scan.,so not sleeping too well and my appetite is next to none!

once all started I’m sure I will get into a routine and have a goal.

i hope you are well on the way to recovery now xx

thanks again for taking the time to reply 

Hi, I had TNC stage 2, not in lymph nodes (30mm tumour) too - diagnosed Sept 2023.  My initial treatment plan was similar to yours:  chemo (Carboplatin..Paclitaxel and Pembrolizumab for 4 cycles then EC for 4 cycles) then surgery (lumpectomy) then radiotherapy.  However, I reacted so badly to the Pembrolizumab and/or Paclitaxel that chemo had to be discontinued. I was really poorly with tons of digestion issues and hepatitis as a result of the Pembrolizumab; I was even hospitalised for a couple of weeks and then on steroids and antibiotics for a couple of months to get my liver back to normal. I advise people to pack a hospital bag as well as a chemo bag. This sounds scary and it was, BUT...

Even the little bit of chemo had (2 cycles) did the job enough that they could operate.  They got the whole tumour and no evidence of it spreading to the lymph system!  I barely have any scars from the surgery. Radiotherapy followed (5 days only) and then just to ensure that no cancer was left in my body, I did 8 cycles of capecitabine (chemo tablets taken at home). I took my last chemo pills last Wednesday and TODAY I was declared cancer-free and discharged from oncology. 

It is a tough old journey.  Make sure that you tell them if are doing poorly - don't underplay it and always call acute oncology if you have a temperature. Be good to yourself and rest - your body and brain have a lot to process. I told EVERYONE what I was going through and the love and support that I got from friends, family and work colleagues was invaluable. Join a cancer support group if you can too.  Having someone who understands what you are going through really helps.  

BTW, I used the cold cap and I didn't lose the hair on my head. (Came out everywhere else though which was a bit of a surprise!)

Congratulations on now being cancer free.

What was the cold cap like?

My sister had it and din't get on with it. she managed just the 1 session and then gave up on it as it was so bad. she had lost her hair 3 times already  (It was her 4th or 5th round of chemo 2 years into her treatment for inflammatory TNBC which did spread to multiple organs)

Im not sure whether to go with the cold cap or just let it all fall out.

It didn't bother me at all.  I have a tiny head though so didn't feel the intense pressure of the cap that other people do and the cold wasn't an issue for me.  It seemed to have worked; my hair thinned a bit but you couldn't tell unless you looked closely.  You can give it up if it is uncomfortable or doesn't work for you, but you have to start it from day 1. You can't decide to try it later. 

My hairdresser did cut my hair really short before I started chemo as she said it will be much less distressing to find short hairs on your pillow/in the shower than long strands.  I don't know if that helped the cap work better or if it was just me but everyone loved the new haircut and I won't be going back to longer hair even though I am done with treatment. 

Thank you for that. I may give it a go, im already planning to have my hair cut short once i have a start date just for the practical side of not wanting to block the shower plug up.

Hi thanks for reply and wow you’ve been through a lot! So glad you’ve reached the end

I had my initial appointment today,came away bricking it! Picc line Thursday.,which I didn’t realise where it went! Yikes  

then Friday dday!

I’ve had my hair cut off in readiness but it’s so thick, I’m not going to cold cap and will take the consequences!

congratulations on finishing your treatment x