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HELP!!!!! HER2 Positive EP Negative Herceptin & Chemo didn't work

RosieL7
Posts: 2
Joined: Sep 2012

I finished 12 weekly taxol/herceptin treatments followed by 4 treatments (every three weeks) of FEC/herceptin. Last Wednesday I went in and had a right mastectomy with lymph node removal. My oncologist said the cancer grew (went from smaller lump to entire breast) and 16 nodes removed all cancerous(originally 2 were shown to have cancer in pet scan). Cancer was detected in lymphatic cells in skin of breast too. I am in shock along with my husband. Doctor wants to do pet scan to see what it shows but isn't optimistic. Radiation is next. Scared out of my mind. Don't want to say anything to my six children until I find out what pet scan shows. Has anyone else have the herceptin/chemo not work? Help.

New Flower
Posts: 3989
Joined: Aug 2009

Hi Rosie,
I am very sorry. I do not know if I can be of any help as I had my mastectomy before I have had Chemo. My mastectomy pathology report before Chemo showed 11 positive lymph nodes and skin invasion as well. We did another surgery to remove cancerous skin. That was four years ago. I am Her2 negative. I had 6 Chemo combos Taxotere/Cytoxan. Unfortunately after 4 years cancer has returned or Chemo did not completely kill every single cell and I am undergoing Chemo treatment again. Please do not be scary. There are another drugs which could be helpful, including for Her2 positive patients. I wish your oncologist could monitor your tumor responses during your 24 weeks of treatment. Please do not loose hope.
New Flower

New Flower
Posts: 3989
Joined: Aug 2009

Hi Rosie,
I am very sorry. I do not know if I can be of any help as I had my mastectomy before I have had Chemo. My mastectomy pathology report before Chemo showed 11 positive lymph nodes and skin invasion as well. We did another surgery to remove cancerous skin. That was four years ago. I am Her2 negative. I had 6 Chemo combos Taxotere/Cytoxan. Unfortunately after 4 years cancer has returned or Chemo did not completely kill every single cell and I am undergoing Chemo treatment again. Please do not be scary. There are another drugs which could be helpful, including for Her2 positive patients. I wish your oncologist could monitor your tumor responses during your 24 weeks of treatment. Please do not loose hope.
New Flower

RosieL7
Posts: 2
Joined: Sep 2012

I am scheduled for a pet scan tomorrow morning to see if it spread. My oncologist and surgeon were monitoring me and I told them I felt like it was growing. I had an ultrasound after the 12 weeks of taxol/herceptin while it showed growth it was inconclusive. They believed it to be inflammation from the chemo. I am freaking out. So scared.

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I am so sorry you are going through this. I have no experience to relate to yours but wanted you to know I am thinking positive thoughts and saying prayers for you.
{{{Hugs}}}
Sandy

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

Hugs hope you sort this out and your Pet is good.

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Sending prayers!

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Hi Rosie,

I would suggest you ask this question to a board which deals with only those who are HER2 positive.

Try cutting and pasting the following web site:

http://her2support.org/vbulletin/forumdisplay.php?f=44

Your cancer sounds very aggressive. Has your oncologist mentioned Avastin? I know it was removed as a drug for Breast Cancer. I've read that they are reconsidering it again. It might be something to add to another chemotherapy. Not every chemo is compatible so for some it's trying another kind to see if that one might work. It is a lot like antibiotics, if the first one doesn't work, one goes on to the next and the next until one works.

Please don't despair, it's to early in the journey to even think that way. I have always waited to tell my children until I had specifics. I tried to spare them the waiting, so I would state a fact and a solution.

Everyone is scared at diagnose, and this is a good place to come for help and encouragement.

Wishing you the very best,

Doris

tufi000's picture
tufi000
Posts: 438
Joined: Jun 2005

My chemo didn't work either, I am positive also, and I had 15 out of 17 positive nodes after double mastectomy. Then rads, comps from rads BUT I am HERE!!! That was 2003!!!!!!

Ask the questions, live each day.

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

So sorry that Mom is facing so many difficult decisions, and complicated results. My
initial reaction (as I am HER2 positive, and did have 1 year of herceptin) .. is that
insurance permitting -- Please get a 2nd opinion - before making any decision on
treatment plan.

If you go with Mom to her appointments -- please take a tape recorder with you, -- you
can go then play back to conversations, questions asked, scope of work, treatment plans.

If Mom is comfortable with Oncologist -- please ask for clinical trial information,
stats, and what would be next -- should this current course of medical treatment
not work.

Is another surgery pending -- ? So many questions, ... Be you Mom's be health
advocate.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Pinky68's picture
Pinky68
Posts: 206
Joined: Jul 2012

How are you doing? Did you have your pet scan done on the 5th?
Thinking of you,
Thoughts and Hugs,
Joyce

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