Tnbc, please give me advice.

What do you want to know?  I had 3 cycles of EC (the Red Devil ) then 3 cycles of Docetaxel.   I was advised I’d loose my hair so step 1 for me was to get a short hair cut in preparation.  Second piece of advice I would say is that after first treatment I had a hard time but that was quickly sorted and the second and 3rd wasn’t as bad.  I also noted that I was fine during and for a few hours after then, it hit me like a train.  I managed through it with a bit of a mantra that pain passes and it won’t last long so just take each moment and it does get easier.  The other thing they did for me was a warm pad on my hand so that the fluid wasn’t cold going up my arm which made it a lot less uncomfortable.  Also do NOT let Then put the line in on the same side as your cancer this is to help prevent lymphadema.  Also you think your ok as hair doesn’t come out until just before your second treatment it will come out so be prepared unless your trying the cold cap but personally I just stuck to a Bennie hat much more comfortable than a wig and if your feeling rubbish it is actually helpful to look like a cancer patient in some situations.  

im through it now and each treatment is a step nearer the end and I felt this was the worst part of the journey. I had chemo before surgery.

L

Thanks for your useful tips on haircut beanie hat and make sure it’s the good side arm for the line, simple things but I’m glad to know these things. Sounds like you had a tough time of treatments but happy for it’s finished. Hope the rest of journey is easier, thanks  

Hi

I have had 4 doses of EC at fortnightly intervals and now on Paclitaxel. 12 weekly treatments.  I have done 3 of them. Everyone responds differently and I have learnt to listen to my body.  With EC I took the drugs prescribed and didn't get sick and kept my appetite.  The fatigue was hard for the first week with EC.

I have a PICC line because of the number of treatments and knew by the end my veins would be a mess. The PICC line is in my left side where there was no cancer.

I decided to have the cold cap.  I cut my hair short as well.  I still have some hair and have not resorted to a wig.  With the hot weather I was pleased as I kind of look OK.  I know the cold cap is controversial but everyone has to make their own decision. The side effects of Paclitaxel are easier to cope with.  However yesterday day 3 I was very fatigued as usual.  Today better until Thursday my best day and just in time for the next dose!!

My surgery was first because of the size of my tumour.  so we are all different.

I hope this helps

Thank you so much for sharing your experience and helpful advice. I was mentioned too the cold cap might be of helping less hair loss, so will give it a try. Line will go in tomorrow, again appreciate for the advice, will hospital give you a picc line cover to begin with? I will be on CP weekly first for 12 weeks then follow by EC every 3 weeks for 4 cycles, yes we are all very different. If I had given the choice in the beginning I would have gone for the surgery first, but being diagnosed it was a shock and wasn’t great at thinking or asking the right questions. 

I have a Limbo shower cover which can be got on prescription via your GP.  Until then it was using clingfilm which was a pain.  I have just used tubigrip covers for everyday. You can get covers on Amazon but I decided not to bother.

When I was not having a treatment a district nurse did the weekly flush and clean.  I am not under the local hospital and my hospital was a bit of a journey away. Again GP should sort this if you cannot go back to the hospital.  Every area is different.

Al; the best

HI Chewy123

I have had 3 cycles of EC (3 weeks apart) and I like LLcoolJ name the red devil as you pee red for 24 hours! Now I am on weekly Paclitaxel but every three weeks I have a dose of Carboplatin with it.  Just had dose 9 of a total of 15.  I have continued to work throughout the treatment so far but everyone is different.  I have bouts of serious fatigue mainly after the Carboplatin so I just take it easy.  Luckily I have a very supportive family so have been able to selfishly concentrate on myself.  I had a cool cap for about 6 doses which is cold but a lady of a certain age it was quite welcome.  The cap does not fit every one and so I have a stripe of thinned hair across the top of my head.  Bought lots of hats and scarves from Scarfgiraffe which are light and don't rub and with the hair I still have at the front and back it looks like I have a full head of hair.  I had long hair so had it cut short before the treatments started and it has continued to grow but has thinned throughout a lot.  Advice that I received which was helpful

1. satin pillow cases so your hair doesn't rub off with a lint roller to pick up the hair in the morning

2. take small steps, with my work I am looking 6-12months out but with cancer you can't do that - just concentrate on the here and now and if you can take someone with you when talking to the medical professionals as they hear more than you do !!

3. wear layers when having chemo and if you are trying the cool cap then a small hotwater bottle is good

4. eat small quantities and when you need it

5. don't worry if you put on weight eat what you need

6. I lost my sense of taste so lemon sherbets and mint humbugs are good to suck and try other things that you wouldn't normally eat like swapping to coffee - stronger flavours

7. wear dark nail varnish to protect your nails and book yourself on the Look Good Feel Better courses for make up (get some goodies) as it will help you when you start to lose hair all over your face.

8. get an ear thermometer and take your readings regularly get to know your normal temperature range for your body just in case

9. its ok to ask for help you will go through some tough times and you will need support to do what were easy daily tasks

10.  I broadcast where I am and how I am feeling weekly on WhatApp to my friends to save me having to text them all individually and when they answer only I see it.  Saves taking about cancer all the time and everyone is up to speed at the same time. 

This is of course though what I am experiencing but if it hits you the same then hope some of these help you.

Good luck

Hi bilbo172,

Thanks for your very encouraging information. My EC regime is every 2 weeks and my experience hasn’t been so easy. The first cycle was manageable but from the 2nd and the 3rd had given me all the unpleasant side effects that just lingered on, the anti nausea medicine helped slightly in the first few days but after that I have no appetite, and continue to be nauseous until the next cycle. I think my 2 weekly cycle is too much for my body to cope. I’m so lucky though I am retired and have a very supportive family that would go beyond to get me through. As I lost a bit of weight from the 2nd, I’ve had to maintain my body with nutritious powder drink like complan, this at least give me strength to go on. 

I wish you all the best in the rest of treatment and I look forward to hearing more good news from you.

Chewy123