Introduction

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)             

 

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)             

 

Hi Sandi I am really new to all this I call ' nightmare ' but getting on with it with all my power and gutso. I feel like I am in denial and just going along with everybody else as in Drs etc telling what to do. But in all this despair I am still ME and will continue to be the outgoing brave healthy woman I am was and will always be I have had two rounds of the chemo you are about to have and I am sort of fine, well today I went for a forty minute walk did some some gardening then I have light hand weights etc and did some exercises, today is a good day. The weekend I was quite weak but that's to be expected as that's when your blood levels etc drop. My first dose had me sleep for almost 60 hours I could not believe it. I was like I had taken some massive sleeping tablets, but sleep is good. I felt sick for quite a few days but the tablets really help. I drink lots of water to get everything out of my system ASAP. not sure if it works like that but I feel good from doing it. I felt like I could feel the chemo going thru my intestines bit painful, but that could just be me I am not going to have radiotherapy as I will go the full mastectomy and immediate boob job I don't want to do any of this but what is a girl supposed to do This is the first time I have ever responded or commented on this site or any for that matter, I have been lurking and reading in the background. I mean where on earth do you pick up the courage to start telling your/ our story, I find it all overwhelming. So I feel I have been pretty lucky ( not a walk in the park ) with my chemo so far, it's hard to say how anyone will react. But they say move around if you can to get those awful drugs flowing around do their bit and leave your body. PS I just turned 52 had a lumpectomy late November, I found the lump ( lucky me ) grade 3 stage 1 fast growing little mongrel but didn't spread. Waiting on Bracs results. Are you an active person sporty etc, I am and I can't wait to hit the gym again, Ask me anything I will reply Hope I didn't bore you Tania xxxxxxx

Hi Sandi I am really new to all this I call ' nightmare ' but getting on with it with all my power and gutso. I feel like I am in denial and just going along with everybody else as in Drs etc telling what to do. But in all this despair I am still ME and will continue to be the outgoing brave healthy woman I am was and will always be I have had two rounds of the chemo you are about to have and I am sort of fine, well today I went for a forty minute walk did some some gardening then I have light hand weights etc and did some exercises, today is a good day. The weekend I was quite weak but that's to be expected as that's when your blood levels etc drop. My first dose had me sleep for almost 60 hours I could not believe it. I was like I had taken some massive sleeping tablets, but sleep is good. I felt sick for quite a few days but the tablets really help. I drink lots of water to get everything out of my system ASAP. not sure if it works like that but I feel good from doing it. I felt like I could feel the chemo going thru my intestines bit painful, but that could just be me I am not going to have radiotherapy as I will go the full mastectomy and immediate boob job I don't want to do any of this but what is a girl supposed to do This is the first time I have ever responded or commented on this site or any for that matter, I have been lurking and reading in the background. I mean where on earth do you pick up the courage to start telling your/ our story, I find it all overwhelming. So I feel I have been pretty lucky ( not a walk in the park ) with my chemo so far, it's hard to say how anyone will react. But they say move around if you can to get those awful drugs flowing around do their bit and leave your body. PS I just turned 52 had a lumpectomy late November, I found the lump ( lucky me ) grade 3 stage 1 fast growing little mongrel but didn't spread. Waiting on Bracs results. Are you an active person sporty etc, I am and I can't wait to hit the gym again, Ask me anything I will reply Hope I didn't bore you Tania xxxxxxx