BRCA1 Gene Mutation and Neoadjuvant Chemotherapy

Now THAT'S a really good idea Charlene.. I may do exactly what you did!  I know it would be easier on my head and I amuse easily-  Ya know what,  I'll do just that!  See... all the great tips are right here!

Thanks so much for your good wishes!!!!

Hello ladies,

Mindy - I guess what I meant was, wait until you know it's going to all fall out. Mine did with taxol, but with the abraxane I'm left with a very thin headful of grays. But enough to look better than nothing when I wear a baseball cap.  Hope your visit goes great!

Hey Mindy,

Just checking to see what the word is from MD Anderson?...you are in my thoughts!

Deb

Thank you ALL for thinking of me.  I hope everyone is doing well.  I've posted in a few areas of the forum since I returned, though wanted to get back here and let you know how it went at MDA. 

The ultrasound rendered a growth of 4mm each side (3-D) horizontally and 1mm vertically.  I'm not sure about their math here- though the report said it showed a 41% "increase" after 3 weekly doses of Taxol.  I wonder if the 41% is tumor load?   I can't get it to add up but I was never good at math.

Without hesitation my oncologist switched me over to FEC - every 3 weeks x 4 or x 6 depending on how this goes.

I can't thank you enough for your warm thoughts and posts in my absence.  We got back late Tuesday.  I was fine traveling and schlepping over-packed luggage.. but boy was I beat for 3 days after.  Today and tonight I feel somewhat human.  Food tastes awful but I'm trying to eat, (even if not the healthiest diet) to keep up some strength. Water is my best friend.  It still tastes good and I manage to drink a ton.

I received a beautiful call from my local oncology nurse today.. Yes on Sat-  I called her when I returned to give her the scoop.   She was totally disheartened the Taxol didn't work.  This amazing soul is a true angel.  I adore her.   I told her not to worry, that we'd beat it with the new chemo.  She's been so supportive and always right there when I need "anything."  I feel beyond blessed to have this compassionate woman taking care of me.  I told her how much I loved her. And I really do love her.

Another thing, while insignificant, I realized my local oncologist didn't communicate with my MDA oncologist at all.  I went online and let them know I felt the tumor growing.  That's when they requested I come to MDA with 12 days notice.  I'm glad they took me seriously.

Hair..  OK.. So,  I wussed-out on cutting what little I have left.  Every time I brush it comes more handfuls so I've pinned it up in now into a tiny bun.  My hubby pulled his hair back to show that I now have the same receding hair line he has.  The kind I never had before.  What a guy!    It makes me feel better to have even a little hair under my baseball cap.  I can't part with that small amount quite yet.   I've cleaned every evidence of hair today.  I don't even want to see a single strand on anything.. anywhere in this house.  Strength is coming back slowly.  I was able to do 30 minutes of Pilates but tired quickly.

Anyway, that's the latest here... They'll check my blood levels at my local oncologist on Wednesday.

Without the support of all of you this whole thing would be so difficult.  Thank you for your steadfast support.  Thank you for all your beautiful sentiments and thoughts.    You ALL ARE SIMPLY THE BEST!!!  

With Much Love and BEST WISHES FOR EACH OF YOU,  Mindy

PS- We just experienced an earthquake after I thought I was through writing. Oh boy, Oklahoma has it all.. tornado alley now earthquakes, too.  WOW!  Such an odd feeling.


Edited by mindy555 - Nov 05 2011 at 11:02pm

Mindy,

Mindy,

Hi Mindy,

I am so glad to hear that MDA took you seriously and got you back in there. Hopefully the FEC will start working for you. I'm glad you are feeling a bit better and very impressed that you felt well enough to do some Pilates!!

When I was doing AC, I had treatment on Friday, Saturday was often fine (or pretty good) and Sunday was usually the worst, then back to work on Monday. The second week was usually pretty decent, but it seemed like life piled up in the week that I was miserable so who had time to exercise when you are just trying to catch up?

That is fabulous that you can still drink water! Smells were awful for me, water tasted off, and even the smell of it made my stomach churn- I had to hold my breath just to take a drink!

Donna, I am thinking that the thread you are talking about is buried in the(Attn Newbies thread) MDA Taxol first study thread where some folks talked about it growing with Taxol. That thread has so many pages but I think it was in there somewhere...will do some reading to see if this ol' chemo brain remembers correctly.

How long before they check your response to the FEC? Growth like that is scary as all get out. I hope and pray that it starts shrinking very soon!!!

Deb

Mindy and Debd,

Edited by 123Donna - Nov 07 2011 at 8:00am

I wanted to add,  I found at least 30 plus positive reports and information on Taxol..  This is only one.  Everything points to taxol being an excellent treatment for many other cancers including TNBC.