Can we start a HER2 roll call?

Hey ladies,

I recently had my 5th year cancerversary and am still NED !

Hugs,  Janie

I am IIa, estrogen +, HER2, diagnosed in March, had lumpectomy and port installed. Just had my first treatment last week. TCH x 6 and then H alone for the rest of a year.

You ladies that have finished treatment - CONGRULATIONS. And to be NED is the best of all.

One day I will be writing that same post here, as will the others of us still in treatment.

Hi everyone, anyone,

I don't know if this is the right place for this.  I am ER+PR+ and Her-2+++.  I had a mastectomy on March 18th or 23rd (can't remember right now?).  I am getting really concerned and worried after reading here for a while.  So many of you have started treatments already and seemingly very fast after diagnosis.  I do not even see the Doctor at the Cancer centre until May 6th. 

The reason I am so worried is because it's been 5 months since I first found the lump.  I had a biopsy in Feb, Mast in March, Chest x-ray, abdominal ultrasound, and bone scan this month (don't know the results yet).  From everything I have read this is quite an aggressive cancer so why am I having to wait so long for everything.  The last time I saw the BS he told me that they like to wait six weeks after surgery before starting treatment.  He also said that I would not be considered urgent?!?!!!  That comment has bothered me quite a bit.

 Another reason I am so concerned is my sister had cancer.  Not breast, they finally labelled it CUP.  She hadn't been well and had seen a lot of doctors.  She had an x-ray in April 2000 and a spot showed up on it.  They did nothing...  After she had been sick all summer, she finally had to see the doctor in Sept (only six months later) by which time the cancer was everywhere.  Ten months later she was gone.  I am not trying to scare anybody here.  But I am scared myself after seeing what my sister went through.

I am going to call the dr on Monday and speak with the doctor's office assistant.  She is sooo nice!  She even offered to come to my appt with me if I couldn't find anyone.  Maybe she can explain it to me.

My path report also said I have extensive lymphovascular invasion.  So that is scary too!  I feel like I've got something inside me, that's growing, and I want it gone - NOW.  It is almost at the 5 month mark and I'm starting to panic.

I guess I haven't had 'nothing' done.  I did have the mastectomy and the doctor said he got everything.  Except, there was mention on the report something about 1-3 nodes.  One for sure that metasticized sp? 

Has anyone else had to wait this long for treatment?  I try not to think about it but today I am really bothered by the waiting.  I am kind of jealous that you all have started or finished.  (Crazy I know).   Thanks for listening.  Anji

Anjii,

My cancer in the lymph node was found first.  So my first surgery was in January.  They found the actual breast cancer in April...so my second surgery was May 22.  I did not start on chemo until July 2 of last year.  So I waited quite a long time to start.  My onc said that the best assurance for me was that even though it is agressive cancer she hoped the surgeon had gotten it all, and had clear margins!  So I had quite a long period of time to wait from January til July.  I hope my Onc was right! 

Hi , I finished Herceptin 2 1/2 years ago. I also had ACT and radiation .    I was first put on Arimidex, but was in so much joint pain and unable to function that they switched me to Femara..significant reduction in pain , but lots of hot flashes and very thinning hair which I can deal with ...just got my hair real short and wear big earrings.  I would encourage to work with your doctor on an alternative to the Femara if still causing alot of pain , sometimes it is as simple as the binders they use in the medication that can set your body off

I am her2+, had bilateral mast with reconstruction. Tumor was 3.6 cm with 8 positive nodes. I did 4 round of A/C 12 Taxol along with Herceptin. Herceptin continued weekly until I had 52 weeks of it. I have had no recurrences and August will be 5 years.

I was diagnosed with ER+/PR+ Her2-neu + Stage 2 IDC 2+ nodes in February, 2007.  After doing dose dense ACT, 12 weeks of taxotere and 1 year of Herceptin, I feel terriffic with ned.

Diane 

I am on Femara...started in February.  I had a lot of back pain but it is now subsiding!

Gina,

I definitely felt an energy surge.  I finished my herceptin in the middle of February 2008; by mid April I felt like I was the energizer bunny.

It took about 6 months to a year for my nails (fingers and toes) to go back to normal  Remember, it will take about 3 months for the herceptin to clear your body and then any nails affected by the herceptin will have to grow out.

My hair and nail growth rate  increased once the herceptin was out of my system.

Hello

I am triple +  I start my chemo tomorrow,   Taxotere carboplatin and Herceptin is what is in store for me.

 Just want to take part in the roll call.

Jamie

Hi, Gina. I was diagnosed May 18 with invasive ductal carcinoma, lymph nodes clear, ER/PR negative HER2+++. Stage ! but don't know the grade. I'm still at the poking and prodding stage--awaiting bilateral MRI and maybe bone scan since I've got pain in right hip and haven't had ANY chemo yet. Had lumpectomy and prob. will start chemo around end of June. Expecting "TCH" taxotere, cytoxin and herceptin plus radiation, but since I'm a "newbie" I don't know much in terms of detail. I'm grateful it was caught fairly early, obviously scared, but starting out with PMA (positive mental attitude). Thanks to all of you who continue to post after finishing treatment to let us newbies know there is light at the end of the tunnel. My prayers and wishes go out to all those engaged in this struggle. Deb

I'm 2 and 1/2 years out. One year out from the end of Herceptin.

1. Were you more anxious and feeling abandonned once treatment was over?

Yes

2. When and what changes did you experience once Herceptin was finished?

 I also had lots of hip pain during H and it has pretty much gone away.

3. My hair is coming in very curly and thicker (normally VERY straight and fine).  If you have had changes to hair growth, what were they and how long did they last (or were they permanent)?

My hair grew slower. It grew fast during H.

4. How and at what frequency are you being followed up?

 At first 3 months, every 6 months, so far.

5. Who is following you (oncologist, family doc, etc.)?

Onc