Introduction

I am coming up to 2 years since diagnosis with TNBC . I had TC agree with some of the ladies with the side effects but looking back now it's all doable . Wishing you all the best Deb

Hi Sandi - I am yet another person that has been lurking and not posted as yet :) Everything seems so surreal at first and I think I'm feeling the same as Tania - just going along with what I'm told to do. I was diagnosed end of November 2013 with invasive DCIS and had lumpectomy with sentinel node biopsy early December - just one node taken and all clear. I am 43 and due to family history have had test done for BRCA2 gene which I should get result in about 2 more weeks. I have been put on regimen of Docetaxel and Cyclophosphamide and just had 2nd lot Wednesday last week. Both cycles they have had to stop the Docetaxel because of a reaction and give me some medicine and then restart 1/2 hour later (hoping it doesn't get any worse). I've been pretty lucky so far with side effects - just feeling tired, sore mouth, diarrhea and just a little achy every now and then. I did have some pins and needles in my toes for a day or two after chemo but it seems to disappear so hoping it stays that way for remaining 2 cycles. Have definitely found can't anticipate how things are going to be each day so am just taking a day at a time and see how it goes :). Still manage to go for a little walk each day and am still working - just at reduced hours though - a little nap in the afternoon is great! Wishing you all the best - Yvonne

Hi Sandi and everyone else. Two years ago I was stage 2 grade 3 triple negative and only 35 years old. I remember the chemo wasn't pleasant but I was SO glad I saw it right through. I would have really regretted it if I'd given up half way through as my onc said I could if I wanted. To make the symptoms a little easier I just listened to everything my Dr told me to do. Also, tell them about all your symptoms because for most things you're experiencing there is something you can take to ease it. I won't say it's a "walk in the park" but I was really surprised how quickly I bounced back after it was over. Also, I found eating really well (when I could) helped me recover quite fast. I had the tingly toes and fingers aswell but it didn't last forever. My thoughts are with you all. Natalie xx

I have been reading your inputs( Alison )seems like secretly as I have only just today starting writing. I am also having Flu like symptoms and a yucky mouth all lots of horrible side affects but it's like once it's gone or eased I am like a new person and totally forget about it all. Some days I feel like I am not even sick ( not sure if sick is the right word ) and think I can do everything. I take lots of panadol or panadiene. But I do try to move its hard some days but I really try and other days I am so kind to myself watching tele eating naughty things but not too naughty. I think I have suffered lots of the side affects but on a tiny scale, I don't want to be sick or sore or tired so once I'm ok I bounce right back. It's yuck it's crap it's awful but I will do anything to get it over and done with and get back to normality What a way to waste a year but lucky we have been given a chance. So I do wish you both well and I think of every lady on this site, we are like Secret Warriors ( not worriers, I hope)

Oh dear this request for input has not come at a good time for me and I hope this doesn't scare you too much!! 

After 3 rounds of FEC, which had various nasty side effects but relatively manageable, I had my first of 3 D treatments 6 days ago (Tuesday 28th Jan). I am scraping the bottom of the barrel then look past that to go lower!! The first day was good as the pre-meds held it all at bay. From then it has been downhill with the fatigue, mouth furriness, no appetite, muscle aches and generally feeling absolutely dreadful!! My onc tells me I may have another 5 days of this. WE wil talk about reducing the next dose when I am feeling better - this is not the time to be making those decisions.

I hve been trying to keep up daily walking but this has become more and more of an effort. I also have a gentle swim in the evenings which helps a little.

One thing I have learnt through all this is that everyone is different and my experience may not match yours in any way!! So, take the positives, hold onto those but be reassured that there are others going through the negatives. Find what, if anything, works for you. Me - I'm taking myself off to bed for the afternoon. Maybe I can sleep this off like a MASSIVE hangover????

Alison

Oh dear this request for input has not come at a good time for me and I hope this doesn't scare you too much!! 

After 3 rounds of FEC, which had various nasty side effects but relatively manageable, I had my first of 3 D treatments 6 days ago (Tuesday 28th Jan). I am scraping the bottom of the barrel then look past that to go lower!! The first day was good as the pre-meds held it all at bay. From then it has been downhill with the fatigue, mouth furriness, no appetite, muscle aches and generally feeling absolutely dreadful!! My onc tells me I may have another 5 days of this. WE wil talk about reducing the next dose when I am feeling better - this is not the time to be making those decisions.

I hve been trying to keep up daily walking but this has become more and more of an effort. I also have a gentle swim in the evenings which helps a little.

One thing I have learnt through all this is that everyone is different and my experience may not match yours in any way!! So, take the positives, hold onto those but be reassured that there are others going through the negatives. Find what, if anything, works for you. Me - I'm taking myself off to bed for the afternoon. Maybe I can sleep this off like a MASSIVE hangover????

Alison

Just reading the list of side effects from some other group members on D and I can report that I didn't have most of these with the weekly P. Worth asking your oncologist about it.

I've got a wordpress blog with all the details of my chemo, including what I did to cope with side effects. I had almost NO trouble with mouth ulcers and no peeling skin.
If you're interested you can read about my treatment here:

positive3neg.wordpess.com

Best wishes with it all.

Meg

 

 

Hi there,

I had the same three rounds of FEC as you and them my oncologist offered me the same taxol treatment as you, or, as an alternative, 12 weekly cycles of paclitaxel. It's still in the taxol group but having it weekly helps to reduce the side effects.

I started to develop peripheral neuropathy in the last three weeks of treatment and my oncologist dropped the dose for my last two sessions. 

I'm now a month post chemo and I still have some numbness and pins and needles in my hands and feet, but it's early days yet and a lot of people on this site report improvement after several months. 

I consider the numbness is a small price to pay for my life. My cancer was very aggressive and I had chemo first. It killed three of my four tumours. I've had surgery in the last couple of weeks to remove the last tumour which was a combination of dead tissue and active cancer. Needless to say I'm a BIG fan of chemotherapy.

Decisions about treatment are so personal and you always need to be guided by what you think will be best in your own situation. I hope my story is useful in helping you to make that decision.

Meg

 

Like you I have only JUST started writing in this group - I think it takes a while to digest this huge curve ball that's been thrown at us ! I'm very similar to you - 54 yrs old, grade 3 stage 1. I love the way you're still going to the gym and I totally agree with you - despite everything we are still the wonderful 'ME'(s) we have always been!!

Have a fantastic week!

Narelle x 

A big warm hello to this group!! I know we'd all rather be meeting in another sort of group sharing a love of food or even (!!) household cleaning tips or something, but it is still a wonderful thing that this group exists and everyone is VERY encouraging and supportive.

i had my three rounds of FEC, like you, and I have already had two of my three scheduled Docetaxel treatments - my very last one is this Wednesday, and I am already getting ready to move into Woohoooo party mode ! :)

I was also VERY scared about the dreaded D because of all the horror stories I'd read about, and was particularly worried about potential permanent loss of feeling to my toes and fingers, but in summary this has been my experience of the two treatments I've had so far:

- no adverse reaction at all during the actual treatments (despite the scary warnings and nurses monitoring for first 15 mins)

- feeling pretty good on the day of treatment (unlike after FEC when I started feeling dodgy/nauseous pretty fast), plus still good and fully active for three/four days after

- feeling a bit washed-out and lethargic (like coming down with the flu) on days five/six, so I just basically lounged on the sofa and dozed.

- some muscle aches on days five/six especially around the lower back, but nothing like the crippling pain I had read about from other women. 

- (ok, here's the bad bit...) BAD mouth ulcers starting five/six days after first treatment - my mouth felt like it had been cut with razorblades and eating was a real challenge (and I LOVE my food so I was very very sad and mopey). These lasted about five/six days?? - felt like forever :(

- red patches on my hands and feet - not sore but noticeable. SLIGHT intermittent tingling in the fingers and toes but not too serious or ongoing.

- peeling hands and feet. The feet in particular have the skin peeling off like a snake shedding its skin - I could pull off a perfect mould of my toe - freaky!!! But no pain or discomfort at all.

That's about it. After my first treatment with D, the doctor tweaked my side-effect medication so I felt less washed-out, less achey and the mouth ulcers were MUCH better - yay!!! 

Re neuropathy the doctor recommended ice packs for fingers and toes during the treatment but the chemo ward I am in (RPA Lifehouse Sydney) didn't have any - duh!! - so I had to do without. There is also apparently some doubt as to whether they work, but really I would have been happy to try anything.

This has been my experience of Docetaxel - I get the impression that it is more 'toxic' than FEC just because of the greater number of visible side-effects e.g. peeling skin, but I still find it less debilitating in terms of what I can do in a day... I still feel well enough to work, do gardening etc. on MOST days, whereas FEC knocked me out for a good week.

All the very best, and feel free to get back to me with any specific questions. :)

Narelle (feeverte)