Hi my name is Sandi, I am new to this group. I was diagnosed with Invasive (Ductal) carcinoma of no special typ which is Triple negative. I had 15 nodes identified all benign which I understand is good news. I have had a left mastectomy and my surgeon refused to take the right breast which I am distressed about. I had that operation on 20 November 2013 and began chemo on 20 December 2013. I have completed 3 rounds of Flurouracil, Epirubicin and Cyclophosphamide. My oncologist now wants me to have a further 3 rounds of Docetaxel (3-21 day cycles). I am really concerned about this one as I noted the high risk of Chemotherapy Induced Peripheral Neuropathy. I know of one lady who can hardly walk after having this treatment. Has anyone else had this treatment that may ease my mind or at least know what I am up for?

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

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)

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

Introduction | BCNA Online Network

33 Replies

positive3negati
Member
12 years ago
I'm having a shot of kefir drinking yoghurt every day for my probiotics. I like the idea of a real food rather than a supplement and kefit contains a complex combination of probiotics, unlike most yoghurts or supplements which only contain acidophilius, bifiddus and sometimes one or two others.

I agree with Sandi that probiotics are part of keeping ulcer free.

I buy the 'babushka' brand of drinking yoghurt at the local organic shop. Their web site can tell you where to get it near you.

Meg

X
Sandi_Lockwood
Member
12 years ago
I use biotene tooth paste and the mouth wash for the mouth ulcers. I also take 1 vitamin D and 1 calcium tablet each day along with 1 Inner Health Probiotic capsule, the probiotic really does help with the ulcers as it assist your stomach. You should check with your oncologist first about them as some oncologists dont like them. I have Tony Micheles who told me they were fine. Since I have been using them, the ulcers have reduced to only rough patches on the inside of my mouth. Ulcers are really trying and can make you feel really miserable, so give it a try if ok with the doctors. Good luck, hope they subside soon.
positive3negati
Member
12 years ago
Hi there,

Here's a link to my blog with all of my tips for mouth ulcers.

http://positive3neg.wordpress.com/2013/11/24/no-more-mouth-ulcers/

Although I am usually prone to them, I managed to pretty much avoid them by following this advice. I hope it helps you too.

Meg
positive3negati
Member
12 years ago
Hi there,

Here's a link to my blog with all of my tips for mouth ulcers.

http://positive3neg.wordpress.com/2013/11/24/no-more-mouth-ulcers/

Although I am usually prone to them, I managed to pretty much avoid them by following this advice. I hope it helps you too.

Meg
NaturalBel
Member
12 years ago
This was in reference to the comments made above mine from Mustang.
NaturalBel
Member
12 years ago
Well written and I think the idea of focusing on the outcome rather than the process is gold. I tried to do that, as far as live in the moment, or not focus on the obviously aweful situation.

I am 6 months after treatment, back at work, and constantly considering my future as "If the Cancer comes back I should........" and my wonderful Mum says "Stop living your life considering the possibility of it coming back, that is no way to live!" So true!

One day at a time! XX Bel
Tania_T
Member
12 years ago
I totally agree about ' how everyone is different ' I am skimming the side affects getting yucky things but only just. I am half way thru my chemo and hope it carries on this way I am not reading or looking out for things to happen I am just trying to be my normal self and when and if I have a reaction to something deal with it then. I have mainly noticed the tiredness but I so quickly forget the yuck and think I'm normal old me, ooh except when I look in the mirror and see that shiny bald head. I always prided myself on having lots of common sense and gee when some people talk to me or tell me things I think to myself "" ahh shut up you idiot as if you would know "" but me being very courteous just smile and say to myself I'm so happy to be me as I would never have said or reacted like that!!! I have been reading your posts Bel for a few weeks, I have been like a little spy, collecting info for my own benefit ( sounds sinister hey ) Thanks for responding to us all, everyone, it comes with great comfort
NaturalBel
Member
12 years ago
My right arm will always be different now, and following the advice of a Physio, and having the opportunity to go to Pink Pilates after my Chemo was very helpful. I still pull out he free DVD from the My Journey Kit and still do Yoga stretches and breathing. I still try to go for at least a half our walk 5 days a week. I recall numbness and cold fingers etc, but it does all settle eventually, for most I assume. I used to be told to not allow myself to stay still for too long and to move when I could. X Bel
NaturalBel
Member
12 years ago
My right arm will always be different now, and following the advice of a Physio, and having the opportunity to go to Pink Pilates after my Chemo was very helpful. I still pull out he free DVD from the My Journey Kit and still do Yoga stretches and breathing. I still try to go for at least a half our walk 5 days a week. I recall numbness and cold fingers etc, but it does all settle eventually, for most I assume. I used to be told to not allow myself to stay still for too long and to move when I could. X Bel
NaturalBel
Member
12 years ago
I had Taxotere and although I skimmed over the info about side effects, I didnt get those. I have to tell you a quick story about a friend of mine, whom I didnt support very well when she went through breast cancer. We were moving house to a different state, and she and I had drifted apart before she got cancer., She is fine today, and gone back to her job. However, on the occasion I did let her know that I then got breast cancer a year after her, she decided to tell me, for an hour over the phone, how aweful it would be. How many things to look out for that would go wrong, and how terrible it was. She didnt hold back, and it was her way of paying me back. We dont speak over the phone any more. I had a totally different experience to her and non of her bad side effects. I look at that situation and can only say, it depends on you state of health before you got cancer, your support and emotional support, the choices you make nutritionally and being sensible about what you do. Sure I had my things to deal with, but putting that list on here wont help you, because your things will be different. I am now 8 months since all my treatment finished. Good luck, X Bel

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