Chemo, epirubicin and cyclophosphamide followed by paclitaxel.

Sounds like you are on the dose dense regime which I was on too. If they were happy reducing to 80% then I dont think theres a need to put it back to 100%. Remember as you are dose dense, the treatment is more aggressive than others to begin with.  It will change anyway when you go onto pac.  My EC wasnt reduced but I had a break after the 4 as I just couldn't take it anymore.  The first pac gave me neuropathy in my fingers and feet so they reduced it for the last 3. I would keep to the 80% and not push yourself into suffering any more than you have to. Hope it all goes well xx

What does dose dense mean (other than literally) and why would I be on that?  I appreciate these are questions I should be asking my oncologist!

Usually EC is given every 3 weeks but we're every 2 but the same dosage so its in our system a week earlier before being 'topped up' so essentially more in our bodies.  With Pac, its usually given weekly on a lower dose (maybe over 9 or 12 weeks) so others have found little side effects with this one, however our overall dose is the same but divided by 4 so you will be on hospital a lot longer than on EC as it takes longer than 4 hours.  Good thing is less trips and overall time shorter but side effects worse. I take it you're quite young? I was 42 and was told as i was young, fit and healthy with no other problems, that my body can take it! Due to my experience with the first 4, they were going to start putting me on the normal regime but i couldnt arrange childcare every week so asked to continue with dose dense.  She agreed but said if I suffered after it then they would definitely change.

They didnt tell me this but tried to do a bit of research and I did read somewhere dose dense does have better chance of preventing recurrence but they obviously have to balance out the side effects hence only given to younger healthy people

Ah I see!  Yeah I'm 43 and otherwise fit and healthy.  This has all been rather a shock and so far out of my realm of knowledge that I just have to agree to what is suggested to me as I just have no idea!

Hi

I did dose dense chemo too 4 x 2 weekly EC then 4 x 2 weekly Paclitaxel.

I found the EC side effects tougher and spent days 3 -7 mostly lying down! With Paclitaxel, the side effects were fewer, but I still have neuropathy in my toes, 5 weeks after finishing.

I'm older than you guys (63) and found it not pleasant but doable,

Take care x

The neuropathy is worrying isnt it? My dosage got reduced as I was worried ot would be permanent.  My feet are ok now but my left hand has constant pins and needles and sometimes numbness and i finished in August. Also developed carpal tunnel syndrome but dont know if its the Exemstane tablets causing that.

Its definitely not pleasant!

I had it in my fingers too, but that's mostly worn off, so I'm hoping it will do the same in my toes!  

Funny you should mention carpal tunnel, I have a painful wrist which has just started since I finished chemo.  I thought it might have been due to letrozole which I started a few weeks ago.  I haven't mentioned to any if the BCNs...waiting to see if it gets easier...

• The oncologist did say to me new side effects can start months after chemo but I'm convinced its the tablets. Also have a frozen shoulder which i thought was just down to me not continuing with the exercises but read that it could be a menopausal symptom. So as well as sunken veins due to chemo through cannula and existing trigger finger, both my hands and arms are just done! I will speak to them about the carpal tunnel syndrome, you should too if it gets any worse as it can cause permanent damage and the cramping pain that has stared at night is awful.

I have sunken veins in my left arm too! It was after an extravasation (horrible)

Horrible thst additional side effects can begin months later.  I just had my last radiotherapy today and was told thst the side effects from thst can also appear months later.  It would be my luck to have delayed chemo and radiotherapy side effects to both hit together!!!

We've done well to cope with all of this stuff,considering that a year ago it would not have even entered our heads

Take care x