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Newcomers Club / Welcome Wagon With the stellar results of the adjuvant clinical trials of Herceptin, we have had many newly diagnosed patients visiting the HER2 Support Group. This Forum is just for them to post. "Old Timers" should only answer existing posts, but not create new

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Old 10-25-2007, 03:24 PM   #1
caligal's Avatar
Join Date: Oct 2007
Posts: 12
Unhappy nervous please help

SO the doctor had the video conference with the cancer specialists from downstate, I have my appt with the onc next week buy I spoke to the nurse and here is what she had to say:

Adrimycin/Cytoxin 4 cycles 2 times a week for 8 weeks

then a break

Taxol weekly for 12 weeks

Herceptin for a year

Radiation after chemo during herceptin.

Side effects for these? Anyone not experience hair loss on adrimycin?

Kinda more scared about the treatment than the cancer.
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Old 10-25-2007, 03:50 PM   #2
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Location: Massillon, Ohio
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It has been a over a year since my first A/C. Your treatment sounds like it will be like mine was. I remember feeling very scared too. The not knowing what I was going to feel like was the worst part. I would lay in bed and think or wonder what I was supposed to feel like. It is different for everyone. Either way your will get through this. It will just seem like a blurb on the radar after awhile. It helped me a lot to take an Ativan before treatment. It helped me with the anxiety of treatment. Having something to do or having someone to talk to during treatment helped. The benedryl made me so sleepy to do much of anything sometimes. I have never heard of anyone not losing their hair on A/C. Embrace the fact of not having a bad hair day. Good news is that it does grow back. I was hoping for maybe a different hair texture when it came back, but no I still have the same frizzy spots and few pieces of gray. You have come to the best site. We are in this together. A lot of us here have been on the same chemo you are going to start. Someone on this site told me to keep my chin up and that helped me during really teary times. Feel free to send me a personally message anytime. You can do this!!!!

Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009

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Old 10-25-2007, 04:59 PM   #3
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Of course you are nervous, who wouldn't be? But just remember, the whole purpose of this is to rid your body of any disease - you may feel like you're giving up a year (or 2), but you get the rest of your years in return.

You will definitely be getting an extreme haircut. Of course it does grow back - some people have it begin to come back while on taxol, but it definitely will start to revive on Herceptin. So your challenge for that is to prepare as best you can mentally, and physically (with hats, scarves, wigs, or whatever).

The chemo's you are taking are powerful stuff - and that's good. Everyone reacts differently in terms of side effects. Try not to freak out when you read the list of possible side effects - they have to tell you EVERYTHING that you might experience....but you won't experience all of them and in fact you may not have any troublesome side effects that can't be managed. Don't claim them until you get them.

These days, they have lots of meds that can help manage the side effects of chemo - so definitely let your doctor/nurse know if you are having problems.

You'll know more once you begin treatment. And you will get through it!
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 10-25-2007, 05:15 PM   #4
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Location: Poland Ohio just a little south of Youngstown.
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Hi Cal,
I know what you're going thru, I was there last year. I had the a/c followed by taxotere then herceptin for a year. I know how scared you are, I was petrified, but I think the biggest fear was the fear of the unknown. Not knowing what to expect and not knowing how it would affect me. Just remember, there is a light at the end of the tunnel. I received ativan with my infusion and it helped. After the first does of cytoxin, I developed a killer headache, so the next infustion, they slowed the drip down quite a bit and I never got another headache. Of course, there's the nausea but take the meds that you're given, BEFORE you feel nauseated. I also used Biotene mouthwash religiously and never had a mouth sore. And start drinking water at least two days before your treatment as well as the day of treatment. All in all, it wasn't as bad as I had anticipated, very doable. You'll come thru just fine. You can do it!
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!

Last edited by nitewind; 10-25-2007 at 05:17 PM.. Reason: submitted before finished.
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Old 10-25-2007, 05:22 PM   #5
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Doesn't taxol cause hair loss too? Do you take herceptin in a pill or iv form?
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Old 10-25-2007, 05:25 PM   #6
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Location: Poland Ohio just a little south of Youngstown.
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I started to get my hair back while I was on Taxotere, even though I only had a couple of treatments of that.
My herceptin is given through my port and I go for an infusion every Friday. Most here get their treatments every three weeks but I tried that and found that I tolerated it great if I had it once weekly. Pretty much no side effects from the Herceptin.
Hang in there
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 10-25-2007, 07:17 PM   #7
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Location: moved to Lancaster, Pa in June, 2010
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You will lose what ever hair you have left when you take the taxol, that's when my eyelashes and eyebrows went. It was great not having to shave the legs for awhil. The herceptin is given by IV. Your hair will start to grow back a few weeks after you finish the taxol. Herceptin does not make the hair fall out. Be sure to drink plenty of water before, during and after treatments. Best of luck. It is a natural emotion to be scared about treatments. After awhile it will seem routine.
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-25-2007, 09:11 PM   #8
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I think I may have heard of one person not losing hair on Ac, only thinning. I think 99 % lose it. My hair started growing back on taxol except on top. Eyelashes and brows disappeared on taxol. At this point you have to get out the make-up.It took about 6 months after taxol to ditch the wig, and start wearing the visor cap. Hair was a big deal to me. That said my hair is still fine but the curls make it look so much better.

Afraid? I went into full blown panic attacks about treatment. Don't be afraid to ask for help. Ie, I can't sleep at night or my heart is racing. No need to suffer.

Also onc nurse told me to do B6 during taxol to prevent nueropathy. Worked for me. I liked to watch movies on DVD during infusions.

I think they are doing this in your best interest to ensure a long life. They can't guarrantee you won't have ugly side effects. Maybe 2 years from now, they wouldn't use Ac on you. They're just working with the info they have now. So it's like gambling to me... so it's up to you as will all these heavy decisions will be.

Good luck. You'll get thru this. BEv
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Old 10-27-2007, 09:58 AM   #9
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It will be ok

When I went for my first chemo I was crying so hard my husband had to tell them my name. I couldn't even speak! I was very, very lucky and had no side effects except for tiredness. Of course I did loose my hair but the lady who made my wig had suggested that when the wig was ready I have my hair cut to almost a crew cut. She said many of her clients found that less traumatic then finding clumps of hair all over the place. I followed her advice. Keep talking to others who have been ther but avoid anyone who is negative. I mean the kind of people who get a paper cut and by the time they tell the story the 3rd time thier finger almost fell off. Some people just love to exaggerate.
The best advice I got from a friend who had bc wa not to letit take over your life. That may ound stupid but what she meant was to ekkp up with things you love as much as possible even if its only a favorite tv show, e mailing a friend, just anything positive that makes you happy. Best of luck.
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Old 10-27-2007, 10:24 AM   #10
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Hi there,

I just wanted to write in and reassure you. I had the identical treatment that you are going to receive. First, let me say that although it was not fun, it was very doable, and not nearly as bad as what I expected. I never got sick (had a little nausea, but it was very managable), I was not strapped to my bed for days on end, I did lose my hair, but was surprised at how I could adjust my wardrobe with scarves, hats and wigs, and it wasn't too bad. In fact, I was able to work through the Taxol as a preschool teacher (a very tiring job w/o chemo!) and never missed a day in addition to being a mom to three boys and attending all of their extra- cirricular activities. The support that I received from my friends and family was amazing and I felt like I had a hundred angels cheering me on daily. I would say honestly, that so many blessings have come from my diagnosis, and that it has truly added to my life. That doesn't mean that it wasn't hard, but I have discovered things about myself and about life that many people never have the chance to.

If you ever want to talk or have any questions, I'd love to help. Just remember- You can do this, and you will be fine. In the end you will be a stronger person with a whole new and appreciative outlook on life. You will grow in ways that you could have never imagined and will also see the many blessings that can come out of something as terrible as cancer.


P.S.- When I had this picture taken, it was with exactly 1 years worth of new hair growth. I promise yours will come in just as quick! In the meantime, get creative and have fun with accessories. Try to see it as an opportunity to try new stuff.
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

Last edited by KellyA; 10-27-2007 at 10:27 AM.. Reason: spelling
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Old 10-27-2007, 02:09 PM   #11
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Location: Near Chicago
Posts: 196

I am just a short ways in front of you. Primary surgery is done (August). Went back to work three weeks later (miss days frequently due to appointments...but would miss many more if I had children, which I don't). Started chemo in September, I'm more than halfway through the three months of AC. After the surgery and losing a body part I had no desire to lose, losing my hair was psychologically hard to come to terms with (eventually I bought numerous caps, scarves bought on eBay by someone who makes scarves just for this, and even a wig (I'm not a wig person but it helps at work so that everyone doesn't know). I think I was more embarrassed about that than anything. Anything I can do to help, just holler...

This is a good support board. You can search for specific info using the SEARCH box above.


Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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Old 10-27-2007, 06:09 PM   #12
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Posts: 660
I lost ALL hair just two weeks after starting adriomycin/cytoxin. The eye brows and lashes are the last thing to fall out. By the time the lashes/brows fall out, you will be on taxol and think it's from that, but it isn't. It's the risidual effects of AC.
Best thing though, the lashes/brows grow back the fastest. You will notice a shadow on your head within a few weeks after finishing up the AC, and then it will seem like forever before your hair is a decent length to do anything with it. If you use a wig - DO NOT OPEN A HOT OVEN WEARING YOUR WIG!!! You will melt it - I know this from experience - lol. Also, if you ski (or even if you don't), DO NOT WEAR THE WIG ON THE SKI LIFT - No matter how hard you try to keep it on your head, the bar will lift your wig off your head. I also know this from experience - LOL LOL!! Cut your hair short now so that it won't be so messy when it starts to fall out. When it is falling out and all over the house, you will probably get frustrated and want to shave it. Keep a lint brush (the sticky tape kind) around for getting the last of the nubbies off your head and for cleaning up your pillow and such. Works great!! This will all be behind you soon enough and you will be able to laugh about it - promise!! Good luck and God bless...
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 10-27-2007, 06:58 PM   #13
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Location: Bedford, Virginia
Posts: 134

My treatment was very similar to yours, with the exception of the Radiation. I started my chemo cocktails of AC/Cytoxin in Sep 06, and I am 3 weeks shy of my last Herceptin treatment. With the exception of my surgery and one setback, I worked throughout my treatment; however, towards the end of my chemo, I had to learn to listen to my body to rest on those days when I was fatigued. I had weekly treatments of Taxol on Fridays, and I would rest on the weekend. The weekend some times ran into Monday and even Tuesday.

I manage a retail mall which meant I worked with the public. Nobody could have been any vainer than I was. I had two good synthetic wigs which I learned to wash in wig shampoo, and I set them on sponge curlers. Cannot tell you the number of times I got complemented on my new hair do's. I had my hairdresser trim my wigs to styles similar to my own. In addition to an eyebrow pencil, I brought a cheap Maybelline eye brow powder which gave my brows a much natural look. Tried false eyelashes, but glue in the eyes hurts! LOL!

I also bought little night caps online because I didn't want my husband of 30+ years to see me bald. I even had one trip to the ER, but I would let the EMS worker take me until he ran to my bath to find one of my scarves!

Now, one year later, I have thick curly hair whereas my hair use to be stick straight hair. Most importantly, I have learned how many wonderful friends and family members I have. If you are like most women, your family has always leaned on you. This is a time in your life you need to lean on others and let them help you.

I read a quote tonight that I thought really applies to us fighting BC.

Friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly.

We will help you fly.

  • Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
  • Taxol/Herceptin combo- 12 weekly treatments;
  • Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
  • BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
  • MRI, 08/02/07 - NED
  • 1 year Anniversary - 09/07; completed Herceptin 11/07.
  • Mammo 02/14/08 - NED; MRI - 08/2008 - NED
  • 2 year Anniversary - 09/08
  • Mammo 02/09 - NED; MRI - 08/09 - NED
  • 3rd year Anniversary - 09/09
  • 5th Annivery - 09/2011 - NED
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Old 10-28-2007, 06:00 PM   #14
Marie in RI
Join Date: Sep 2007
Location: In the woods in RI
Posts: 6
Hello Caligal - I'm just a few months ahead of you with a very similar dx. The A/C is not so bad (just had round three this past thursday and am tired but otherwise ok). The surgery was a piece of cake as was the sentinal node biopsy. I've been reading a lot on this website and there seems to be a great support network here. You can do this!
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Old 10-28-2007, 07:13 PM   #15
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Posts: 12

Thanks for all of the support. It will have been 3 wks tuesday since my surgery and my appointment for the onc is on friday. I am going to ask my pcp for something for anxiety. Tried valium that my surgeon gave me but made me too sleepy during the day. (although I slept right thru the night for the first time in almost a week!!)Want to take something during the day if needed when I have those omg freak out moments.

I have 2 jobs, one I work pt at the local radio station so I don't really have to worry what I look like. The other one is my full time job, laid off right now, I am a food server. Still not sure about if I will be able to do that one while on chemo.

The nurse said I should start chemo in 6 weeks or so, will update more on friday.

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Old 10-30-2007, 05:38 PM   #16
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Posts: 2,139
Try Ativan for the anxiety. I often just take half.
It was not that long ago that I was feeling just as you are now. The anticipation is so overwhelming. I had a the psychologist at the cancer center tell me that once treatment started I would feel like a pin had punctured the balloon of anxiety. And she was right. It helps to remember that alot of people have gone before us and are thriving. And are here for support.

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-31-2007, 06:11 AM   #17
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Location: Morris, IL
Posts: 3,508
You may notice that while on AC, certain food smells will make you nauseated, and perfumes etc...might not fare well with your job. As far as Taxol, I am getting it right now....my hair is starting to return...although much grayer, but my eyebrows are still thin....all said, it has not been bad at all.
Sending you a big hug and some strength, after the first treatment, you will be able to relax more!
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."

Hugs & Blessings
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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