2009 Herceptin group

I have recently had surger for HER2+, lymph node negative, ER/PR negative.  The tumor was 1.4 cm and no invovement in surrounding tissues.  I also had a mammosite (targeted radiation) treatment.  My oncologist now suggests TCH treatments.  I would appreciate hearing from anyone who has had a similar situation.  I am still trying to get through all of the information.  My doctors did not indicate that chemotherapy would occur after the surgery and mammosite treatments.

Joan118477 

I will also belong to this group starting sometime in July, looking forward to talking with some of you! Currently started my treatment with 4 rounds of AC every 2 weeks this past Wednesday.

Joan,

plakatakr is right, almost everyone with HER2 gets chemo.  My surgeon lead me to believe that I wouldn't have chemo also, but I had followed along on the NCCN Guidelines in Oncology section on Breast Cancer so I knew I would be getting it.  It is a decision tree, so as pathology reports and other information comes in, you move from one window to the next.  I learned that with my stage 1, node negative, ER-/PR-/HER2+, tumor greater than .5 cm the standard recommendation was chemo and Herceptin.  See:

http://www.nccn.org/

hit "Quick Links" on the right

scroll down to "Clinical Practice Guidelines" 

 scroll down to "Guidelines for Treatment of Cancer by Site"

scrool down to "Breast Cancer

register - anyone can

Open the breast cancer information

click through until you get to your type of cancer and go from page to page following the recommended treatments as informaiton on your cancer comes in from tests.

Betsy

DX 3-18-08: Bilateral BC - IDC, 1.8 cm, Stage 1, Grade 3, 0/1 nodes, ER-/PR-, HER2+

                                      DCIS, high nuclear grade, ER+/PR-

Nancy ~ I have a Bard Power Port as well.  I have never used the Emla cream, mainly use ice for numbing.  When I had to give blood, I didn't use any ice, and you're right, it was only a pinch.  No real pain at all.  When I go for chemo, I just use ice for 10 minutes and the site is perfectly numb.

Whenever my port is accessed, a tiny bit of blood is drawn out to make sure it is "connected".  When I have needed blood work, they take the blood first, leave a plastic tube with 2 connectors for attaching the IV or IV's.   I have had 2 IV's going at once - mainly chemo or Herceptin AND saline, which helps dilute it going in and helps with hydration.   

When I was getting chemo, total of 16 times, I needed blood work done at the same time.  In between I had scans with dye contrast, which required another "vein puncture".  Then surgery required an IV.  Way too many potential "can't get a vein" and the reason for the port.   I was told that each time the vein is punctured, a small scar forms and eventually there is nothing left but scar tissue and that does not work for blood draws or IV's.    

Also, I was told some keep the port for long periods of time, but it MUST be flushed at least once a month to prevent blood clots, unless blood work or an infusion is done.   Maybe I am nut case, but I "wear" my port as a badge of honor - I am proud to have this available to me for MY medical treatments.    

Amy - EF is ejection fraction, it is measured in a % and normal is 55%-65% & up, (each facility has it's own "normal" range).  Some of us on herceptin have echo's and some have MUGA's, they both give an EF, which tells the Onc. how well the heart muscle is pumping, if your number gets low it indicates that herceptin is causing some damage, that can be reversible over time.  That's why they watch it.  MUGA's or Echo's should be done every3 months while on Herceptin. I had my first MUGA right before my first H, and it was 68%.  I still have 2mos before my next MUGA.  The CoQ10 helps rebuild cells, that's why the doc recommended it after chemo when you are on H only, it may also benefit the liver etc, not just the heart, but like you said, we can't take it with Chemo.  I'll be trying it when I get to that point.

I hope all goes well for us!!  Love, Jessica xoxo

Amy is strong-

EF is your ejection fraction and it is a score that is given after your MUGA or Echo to see the efficiency of your heart function. Normal is above 50 and they watch to see if remains stable on certain chemo regimens. The Muga is more precise but more invasive. The Echo is good as long as you have the same person reading it each time. I had both and it only varied by 2 points comparing the 2 tests. I did take CoQ10 and it seemed to help. I started at 53 and actually ended at 60 the tech states that was the exercise and the Coq10, who knows. I just know that I felt better less winded after 1 month on the Coq10.

pmellon - don't worry about neuropathy!  I was worried before starting taxotere, but after first tingle in hand I took Glutamine powder 2 tsp a day in water.  Worked a treat and also helped big time with mouth symptoms.

lhall, I had something similar, but now they are growing back and I'm still on Herceptin alone. The best reasoning I can come up with, is that it is a delayed reaction from the Taxol.

Today I had my herceptin. If all goes as it has, tonight I will have major stomach cramps followed by diahhrea.  Let's see....

If you girls knew how much your posts help a "newbie".  I have had one treatment.  I go for Herceptin tomorrow.  The chemo took its toll, and I've only had one treatment!  My belly feels icky and the indigestion is awful (don't get me started on metallic mouth).  I am going for a port consult on June 8th.  Sounds like it is the way to go.  Keep posting - I am devouring everything everyone writes. 

Hi Karen and all!!

I am still here Karen... I have gone back to work so I am a little less active around here..:) I do check in at least twice a week...

I lost all my eye lashes and then the grew back awesome! Then...5 months AFTER chemo.. they all fell out again... WHAT IS WITH THAT CRUD????????? Now they are growing back again...

Herceptin make my whole body ache.. and yes.. I have gained about 16 pds.. I am really hitting it hard to loose it now... I have been doing some exercises.. but now I am going to pick it up to 5 days a week.. I have to.. the weight is not healthy and so very uncomfortable...

Ladies.. I hope you are well and enjoying your summer time...

Laura

Hello!!!

 I hope it is not too late in the year to join...I just finished up 6 cycles of TCH on 5/18 and just had my first three week dose of Herceptin on Tuesday.  I will continue Herceptin through the remainder of the year.

Hi to All:)

Diane

Hello To All!,

For my birthday yesterday, my DH shaved my head. Was taking a shower yesterday morning and it was just a mess....My hair was coming out in HUGE clumps....BUT, I was very proud of myself, I actually feel BETTER because THAT part of the "waiting" if over!!!! Now offically wearing my wig. Going to walk tomorrow in the Race for the Cure and I am not going to wear my wig. I figure, why, I will be among the women who know best, right!! Well, I am off and I will be praying for all of you to have good treatments and little to no se's and I will talk w/you all next week.  Next Thursday is tx #2 of #6...Almost half way there!!!