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

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33 Replies

Kate38
Member
12 years ago
Hi Vebe,

Sorry for delay in response, I am trying to juggle work, chemo and being a single mother, so I dont have much time to spend on this forum :)

Anyway, I understand how you might be feeling with your diagnosis of metaplastic breast cancer. I MIGHT have a form..matrix producing metaplastic breast cancer, but the core biospy results were inconclusive about that and because I am having chemo before surgery, the diagnosis can't be confirmed.

The information about metaplastic breast cancer on the internet is scary and my Drs seem to brush aside my questions about what it might mean.

Anyway I hope you are doing well, and there is a good chance you are not alone with your metaplastice BC diagnosis.

Cheers

Kate
Casjsa
Member
12 years ago
I found this for you because I wanted to know what "Metaplastic" meant.

http://www.cancer.net/cancer-types/breast-cancer-metaplastic

Cas
Casjsa
Member
12 years ago
I found this for you because I wanted to know what "Metaplastic" meant.

http://www.cancer.net/cancer-types/breast-cancer-metaplastic

Cas
Casjsa
Member
12 years ago
Hi Narelle,

I've had even less side effects on Docataxol than you. I have done the three rounds of FEC and so far two rounds of Docataxol. I didn't have the ice mittens or foot mittens although they were offered and available. I've kept my fingernails painted with nail polish as suggested and so far they are in pristine condition.

I was like you, had the round, I was OK till day five. Day five of the second round happened to be day one of university for me. I lasted 45 minutes in class. I had five days of diahrear and nothing stopped it. I drank a lot of Gatoraide to keep my electrolytes up. I was tired for about 10 days. I haven't had any skin peeling or mouth ulcers. I had a week where food tasted like polystyrene cups and meat was just disgusting but I forced myself to eat well.

My veins have collapsed but I'm fortunate to have a portacath even though it has been tiresome to access.

So apart from some finger tingling, a few days of viewing the walls of my ensuite and a fair bit of time in front of the television I can't complain. My last round is next Tuesday 18/3. Yippee!

Cas
Vebe
Member
12 years ago
Hi all, I have read all your postings and relate oh so well to most of them. Chemo for me has been two weeks of misery followed by one of feeling almost normal before I get another blast. Last week was the worst as I wound up in hospital for 3 days due to neutropenia and a resulting infection. My regime is AC and a nulasta injection 24 hours after to boost my immune system. Have my final one on Monday. Hurrah! Then start radiotherapy. Ummm...? I was diagnosed in Dec 2013 and had a lumpectomy then was told it was the triple neg, metaplastic, basal cell type, which I understand is an aggressive form and one which is hard to detect. I can't seem to find anything on my type of breast cancer and that is making matters worse for me emotionally. I really want to know there are others like me out there, even if we are rarities.
Vebe
Member
12 years ago
Hi all, I have read all your postings and relate oh so well to most of them. Chemo for me has been two weeks of misery followed by one of feeling almost normal before I get another blast. Last week was the worst as I wound up in hospital for 3 days due to neutropenia and a resulting infection. My regime is AC and a nulasta injection 24 hours after to boost my immune system. Have my final one on Monday. Hurrah! Then start radiotherapy. Ummm...? I was diagnosed in Dec 2013 and had a lumpectomy then was told it was the triple neg, metaplastic, basal cell type, which I understand is an aggressive form and one which is hard to detect. I can't seem to find anything on my type of breast cancer and that is making matters worse for me emotionally. I really want to know there are others like me out there, even if we are rarities.
Sandi_Lockwood
Member
12 years ago
Hi Tania

I had my lump removed first and no radiotherapy, but not happy with the Docetaxel, only two to go, thank goodness.

I am an active person, I wouldn't say sporty but take walks with my dog and looking to join a yoga group once I am well enough.

Just want to get this done and get on with my life.

thank you for responding to my questions, I was feeling quite depressed about it all.

Sandi
Jenw
Member
12 years ago
Hi Sandi

Just like all the above, i got all the side affects, but saying that I finished in July last year, & I'm Cancer Free so to me it was all worth it. & to make sure, I have just had my second Mastectomy two weeks ago, feeling a bit sore but so happy to get rid of the last boob, I was a 16DD, a lot to carry around for a year,feel very light now, I'm 62 so have decided not to have recon, will be happy with proshesis

plus I get to go down a couple of sizes (yea). I wish you all the best. don't forget to paint your fingernails, I did, did not loose any finger nails but lost all toenails which have now come back, don't freak out they just flake off, so you really hardly notice.

Jenny

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