Kim1965

Hi everyone --

Correct me if I'm wrong, but I didn't think there was any way to test that Herceptin was "working" unless you had metastatic breast cancer and can see (in CT scans) if the cancer is spreading or shrinking.  For those of us without mets there is no way to tell.

Kim

I am the fourth of five children...1 boy, 4 girls.  I have one maternal aunt that got bc at age 69 and died at age 76.  My other maternal aunt died at 49 from "non-specific reproductive cancer" (that's what they were calling it in 1966..we're assuming thaty it was probably ovarian cancer.  My oldest sister was diagnosed with inflammatory breast cancer at age 38 and died at age 42.  After my oldest sister was diagnosed, myself and my other two sisters got our first mammograms.  Lo and behold, my other older sister had bc as well...triple positive with 14 positive nodes.  Both sisters went through chemo together.  My second sister was in remission for 7 years and then got a recurrance.  She died 3 years later at age 45.  Since both sisters tested negative for the gene, my younger sister and I decided that we didn't need to do prophylactic mascemtomies.  BIG MISTAKE.  I was diagnosed with stage one, triple positive earlier this year at age 42...oncotype score 65 (off the charts according to my oncologist).  I also tested negative for the gene.  My brother, the oldest in the family, was diagnosed with colon cancer two years ago at age 53.  Both of my parents are 81 and healthy.  They do not know about my cancer.  I have chosen to keep it a secret...it would put them in the grave for sure.  For the time being, I am saying that I'm traveling all of the time for work. As soon as my hair grows back long enough for extensions, I'll go home to visit.  I miss them so much.

Lisa -

 I couldn't agree with you more about the psychological impact.  Before losing my hair, I thought maybe that I was overestimating how devistating it would be.  Turns out...I was completely UNDERestimating how much it would affect me.  This may sound lame to some...but if I had the chance to make the decision about chemo over again -- I would refuse it.  It will be years before my hair grows back to its length before chemo.. That's years, folks.  Not days, not months...YEARS.  As a single person, I can't tell you how profoundly the hairloss has affected me.  I felt that I was really pushed into the chemo and looking back now, I know that I would have been able to sleep fine at night had I refused it.  In retrospect,  I would much rather have had a potientially shorter life WITH HAIR than a longer life without.  I'm not interested in fighting for my life...I'm only interested in living it.  With or without breast cancer, all of us are going to die...eventually.  I want QUALITY days...not quantity.  And I always knew that...which is why I'm so full of anger and rage (at myself) for jumping on the chemo bandwagon.

Sorry to be such a downer but those are my honest feelings.

Kim

know what's odd?...One of the side effects of Effexor is night sweats.  I was on it years ago for anxiety.  I had to stop taking it because I was sick of waking up in the middle of the night with cold, clammy sweat everywhere.  Plus, it made me gain 25 pounds in eight weeks.  Ironic that they prescribe it to help STOP hot flashes.

Kimberlyn -

 I too found the hair loss to be the most upsetting thing.  If I could change anything about myself, my hair would be the last thing I'd ever want to change.  I've had long, straight, thick blonde hair my whole life.  It's the one thing that I'd always get complements on from strangers...just walkiing down the street.  I'm 16 days out from my first treatment.  On day 11 I noticed small strands coming out, day 12 a few more, and by day 13....lots of strands.  On the fourteenth day, I went to my salon and had it buzzed.  I cried for about two minutes,while my hairdresser was cutting off the length (before using the clippers), but once the first cut is made, there is no turning back.  I think I felt more sad for her (having to cut my hair off), than for myself.  I could tell that it was killing her to see me with my head tilted down and my hand covering my forehead to hide the tears streaming down my face.

As soon as she was finished, she put my wig on.  I wore it to work the next day and aside with it feeling a little wierd, I'm ok with it now.  I've accepted that this is something that I must go through and as awful as it is -- it IS temporary.

You will be in my thoughts and prayers.  It is amazing how time allows us to accept things and move forward.  When this journey started, I had already made up my mind that I would NEVER do chemo, no matter what the pathology report said after having my lump removed.  I watched both my older sisters live with and die from this disease.  I had every intention of ignoring what my surgeon and oncologist recommended.  I was planning on pretending this wasn't happening....going on with life as usual after the lumpectomy and just taking my chances that my cancer wouldn't come back.  And now here I am, one treatment in and no hair.  

I know that I made the right decision to fight this thing - but it's not easy.  I hope that you find comfort in these boards. I know that I do.  If you ever need to talk, just send me a PM.  I wish you the best of luck with treatment #1. 

Kim

Hi Irish -

 I'm on day 13 and just this morning I noticed the stands that you were referring to coming out  when I run my fingers through my hair.  Pretty freaky.  I figure that I'll be getting my head shaved in a few days.  Right now I have long straight blonde hair.  I spent a fortune on a human hair wig with a lace front and I have to tell you....it looks EXACTLY like my natural hair.  For those of you who haven't heard of lace front....the hair on the wig is hand tied allover, but in the front of the wig that frames the face, the hair is tied to a frame of lace (looks like mesh).  It makes the hair appear to be growing right out of your head (as opposed to non-lace front wigs where, if you pull the hair back, you see a "band-like" appearance).  I've also learned that you can get these types of wigs bonded to your head with some type of adhesive that keeps in in-tact for a few weeks.  You can get in the shower and wash and blow dry your hair like normal.  I'm not sure that I'll go that route, but I thought I would put it out there for others to learn of this option.

My next treatment is Aug 5th.  I hoping that my side effects are minimal.  With treatment number one...if I didn't know better, I would have thought that they put water in those chemo bags...not a single side effect.  I feel completely normal.

Regarding oncotypes..I was a record breaker at a whopping score of 65.  For those that are curious, go to the HER2+ thread and read the High Oncotype Horror thread.

Hi all -

 I'm 10 days out from my first treatment and aside from metal mouth, which lasted two days, I haven't had a single side effect.  I feel completely "normal".  Not that I'm complaining, but has anyone else had this experience?  I keep waiting for the ax to drop, but so far...nothing.  Not even the slightest bit of fatigue.  I did get a Neulasta shot the day after treatement, so perhaps that is what saved me.  I took Claritan preventively and did not have any bone pain to speak of.

 As for my period, it should have come last week, but I never got it.  Can chemo shut down our ovaries THAT quickly?  I was expecting to have at least one period through my treatment.

My hair should be falling out early next week.  Not looking forward to it!

Girls -

 I had a second opinion from another oncologist that was not in agreement with my first oncologist.  My first opinion was 6x TCH (taxotere, carboplatin, herceptin).  The second opinion was 4x (taxotere, cytoxin, herceptin).  My second opinion was from a very famous oncologist at the University of Pennsylvania.  If anything, I thought he'd have the more aggressive regime, but he didn't.  He felt strongly that 4x Tax/Cytoxin/Herceptin was adequate.  EVEN, in light of my ridiculous oncotype score of 65!

 Please help!  Is there anyone out there doing four treatments of taxotere/cytoxin/herceptin ??

Kim

Sorry, girls....I am the official contest winner here.  My tumor was 7mm, grade 3, ER+/PR-,   HER2+, negative nodes, clear margins.  My oncotype score is a whopping 65!  (I always was an overachiever!)  My surgeon said that he'd never seen one that high, but then again, he NEVER sends out for oncotype with HER2 positive patients, because the high number is a given.  He only did so because I insisted. 

Hi girls!  -

I'll be right behind you in treatment...probably starting around July 14th.  6x TCH....followed by rads and tamoxifan (I'm 42 yrs. old)   My tumor was 7mm (<1cm), Grade 3, ER+/PR-, HER2+.  I am still waiting for my onco score....I'll post it as soon as it comes back.  I'm expecting to be high based on what I've read/heard.

Have any of you recieved your adjuvanentonline statistics?

Kim