Calling all TNs

MBJ - I was having one of those days yesterday.  I just couldn't pull it together.  One of my college friends had stage 4 colon cancer and suddenly took a turn for the worse about a week ago.  She passed away on Monday.  I was doing okay during treatments, but now I am really sad and scared.  It sucks!!!  I try to find the little joys in my life.  You are a great person and have brought so much to these boards. I love your insights on nutrition, supplements, hair products and hair styling!!!  Please don't leave us.  You are an inspiration!!! 

Titan, Thanks for the post.  Age: 57 -Got layoff notice April 2010 (29 years w/CSC), decided to head to toe DR visits, mammo (2 years between great and godawful results).  Right breast ~2.4cm "poorly defferentiate carcinoma" from initial biopsy in 4/22.  Focused on lumpetcomy vs mastetomy at first, did bi-lateral because of statistical results of just doing one and having recurrance in left breast was 50% and I only wanted to do this once.  BEST decision I could make for myself 6/18.  Family history - BRAC 1 and 2 were negative.  Sential node was also requested - 14 nodes taken all negative...doing happy dance of a moment.  Told not so fast, need to go to oncologist - did 4 different opinions because of the "profile" of TNS - under 40/premenaposal/african american women, which I am none of...had the results re-run.  Grade III (pt2/pn0, pmx) and HER-2 negative, KI-67 at 85%.  Found the best oncologist out of the group of 4 - one told me without treatment I would die within 2 years,  Left that office never to return. 

My chosen oncologist used Adjuvant! On-line decision tool to help with the chemo decision.  Please ask for this one page report it gives an overview of statistics and benefits:

1 - no additional therapy

2 - with hormonal therapy

3 - with chemotherapy

4 - with combined therapy and the projected benefits focused on relaspe

Rediagnosised as Stage IIA(T2 N0 M0)

Two cycles of TAC complicated by hospitalization (neutrapenic after Nulasta booster); 2 Blood transfusion needed hospital stays totalled 12 days.

TAC = Please ask for the Patient drug information so you know warnings before starting.

T= Taxotere (Docetaxel)

A= Adria (we had a US shortage of this drug at XMAS0 and changed to Epirubicin)

C=Cyclophosphamide

Did AC portion 4 times every 3 weeks; follow up currently with 6 weekly rounds of Taxotere, on my 5th round today.  I can not believe how many women are being diagnosed with this who do not fit the "profile".  Right now, my onc believes that I won't have the need for any post-chemo drugs..I'd do a happy dance, but I know what happened last time!

I joined Gilda's Club, if there is one near you, it's a great support organization.

cc4npg, Well said!

MPJ,  Bless your heart darling. 

Heidi, thanks for the article. 

MBJ -  We have been having a few springlike weather here in California which kinda brought about a little bit happiness in my heart.  Although I was going through a lot, it still brought some smile and a feeling of joy.  I hope the spring which is just around the corner will bring happiness and joy to your heart, too.  How are you feeling today?

Monisch -I was wondering how much time did you have in between your chemo and when you started radiation? Did your doc tell you how much is the maximum time before someone should start radiation?  I have to do my genetic test which will take 3 weeks, plus I have already wasted 4 weeks just waiting for this and that.  I am afraid my radiation is getting late.

I still have numbness in my feet and hands when I am asleep at night, trying to get up I have to first wake up these parts.  My fingernails are still black/brown (finished chemo on 12/28/10). The thumbs are blackish, but the other fingers have brown lines going across at the edges.

MBJ: Hope today is good for you. Definitely take a break, but don't stay away forever. Pls pop in once in a while to say hi.

Lovelyface & Suze35: I'm worried about the neuropathy (will likely find out about my chemo regimen onMonday at onc appt.). I already have issues in both hands, esp. at night, from carpal tunnel and what I think is an impinged nerve in my right shoulder.Are any chemo drugs worse for causing this? Is it said to be permanent or do they say it will go away?

Of course, I trust my docs but it seems often we get the real, first-hand truth here, from each other, so I appreciate any info.

Michelle:

I got instant neuropathy of all my fingers and all my toes after just the first Taxol.  I saw the onc the next day and she was alarmed.  I was on the DD 4 xs Taxol.  By the time my second round was due, neuropathy was still the same - hadn't lessened or worsened at all.  She didn't care - she switched me immediately to Taxotere for the remaining three doses.  I was leery, but she did say taxotere is nasty, very strong, but is easier on the neuropathy.  She was correct - it never worsened at all on the taxotere.  took about 6 months after I was done for my fingers to come back (I would say about 98%) but my toes still feel like little cocktail franks sticking off my feet.  Oh well - it could be worse I suppose, just hope all this crap works!!  Good luck.

Lovelyface:

Neuropathy can hit anyplace in your body where you have nerves - which is everywhere!  I have read of gals that have had it in their faces, or chin - lips, etc.  While mine was very annoying - I am thankful I just had it in fingers and toes, but I did occasionally feel other areas either "burning" or very sensitive to touch, ie. clothes rubbing, but it was transitory.  They say most of it goes away completely eventually,but there are others many years out that still have it, but much lighter than during and immediately after chemo.  I'm still hoping mine will go completely too - but who knows!  My toe nails started to lift (big toes) and I had to see a podiatrist that cut them really, really low.  They have come in much thicker than they ever were and are hard to clip with a toe nail clipper, but he says that once the grow completely out, they should be good as new.  Hope it happens in this lifetime!

How many TN's undergo chemo after surgery? My oncologist recomended going six times for FEC and I was wondering if anyone has done this treatment. Did they find it effective and how were the side effects

Anyone have any feedback on FEC?

MBJ - Hope you are feeling a little more like yourself.  You are an inspiration to me and feel comfortable saying for alot of the woman on here to.  Please dont stay away to long and if you need to vent you know we are all here and you can pm me anytime.  Huge hugs (((((((((((((((((()))))))))))))))))))))

kelben: How are you? I've been thinking of you since you posted about the seroma. I hope everything's ok.

Titan: You've been quiet too....I hope you're out enjoying life! Thinking of you too...and all the TNs I've come to know & love on this thread.

Get my BRCA results in a couple of hours. Fingers crossed.

Awwh Kelben I have been thinking and praying for you constantly. Things will work out!

Also about the temps I am low as well 94.3. Wired what's the explanation for this?? Although I was cold before cancer especially at work. I always keep a small heater under my desk. Is anyone else working while going through treatments?

Kelben: Waiting is a bit$h, for sure, but PLEASE try not to torture yourself with thinking of what it may or could be.  I know only too well that it's almost impossible not to do that to ourselves, but go as easy on yourself as possible and eat lots of ativan or xanax instead!  We are all with you - right there beside you.

Linda

Loving_mother - I am having my chemo before surgery, and most likely won't need more, but it is still possible depending on my surgical outcome. Most TNs get chemo either befor or after. I haven't heard much about FEC, hopefully someone has.



Kittycat - a massage sounds heavenly! Even if it isn't a cure all, it certainly won't hurt!



Michelle - keeping my fingers crossed that you are negative!



Kelben - thinking of you...it sucks to even think that what have to do NOW may come back to bite us in the butt later - but I will keep another pair of fingers crossed that everything works out for you. Stay off the Google!!



Fighter - don't feel bad for ranting! You have so much on your emotional plate, keeping it in only makes it worse. I'm sorry to hear you and your DH are struggling right now. Even though DH and I are pretty solid, we have scheduled therapy for us because we just seem to be ripping at the seams sometimes. On top of this awful diagnosis, well...rant away!



I'm feeling physically better this week, which I hope means no Neupogen shots next week.



Question - when did you guys have your port removed? I am leaving it in after my first surgery in case I need more chemo, but didn't know if I should leave it there until my reconstruction a few months down the line? Is it easy to remove? I had a fairly bad placement, and don't want to go through that again in terms of removal.

Hi everyone--still in quite a bit of a funk, so much so that I just cried some more after reading all of your wonderful posts.  Just need to take a break for a few days, so that I am not just moping around on here.

Michelle:  Get L-Glutamine 1000 mg to try and prevent neuropathy while undergoing chemo.  I have it really bad in my hands and it wakes me up every night now and makes me walk like I am 90.