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Her2/neu

richards
Posts: 1
Joined: Aug 2000

Hello All,
My name is Stephanie. I have never had cancer- my sister has recently been diagnosed with lobular carcinoma. I am obsessed with making sure she gets the best treatment. I'm looking for information and advice. She has 2+ lymphnodes and is strongly posituve for Her2-neu oncogene. She's had her lumpectomy and will soon start AC chemo., followed by radiation amd tamoxifen. Do you know anyone who has been given Herceptin?
Thanks for your help-SLR

FightingGL
Posts: 1
Joined: Sep 2009

Hi Stephanie - As you probably already know HER2neu+ is a gene that makes your sisters cancer more aggressive. I have this gene myself. The Herceptine is used to mutate the gene - which is great for now and if the cancer should return in the future. I personally will be on a weekly dose of Herceptine for a year. I've had 2 treatments so far with no ill affects whatsoever from this medicine. - Gayla

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Hi Stephanie. I want to say hi and to welcome you to the site. I am very sorry about your sister. I don't have lobular cancer and my nodes were clean. I can't help with information on your sister's diagnosis. Please talk to her oncologist about all of this. That is his job to help you thru this. Good luck to both of you!

♥ Noel

Marsha Mulvey
Posts: 597
Joined: May 2010

It's been a while since anyone has replied to this but I'm new and didn't know where to start. I'm 58 years old and have always been healthy. In February, 2010 I was diagnosed with breast cancer. Further testing showed it involved several lymph nodes, the liver, bones, and skin. The largest tumor was over 6 cm (more than 2 inches) in size. All things considered, I have Stage IV cancer.

Surgery was not even a possibility so neo-adjuvant treatment was decided upon. On 2/25/10, I had a porta-cath implanted and started chemo the next day. For TEN CONSECUTIVE Friday's I had Taxol and Herceptin. Weeks 1, 5, and 9 I also got Zometa for the bones.

After only a couple of weeks the breast and some nodes showed improvement but the liver and bones were in question. I had to wait until May 3 to have a CT Scan to see what was happening. Followed up with my doctor on the 7th. He was very happy, as was I. The scan showed "significant decrease in size" of the numerous spots in the liver and the spots in the bones have been held in check. At that time he chose to give me a "short break" from Taxol. So...on Friday's 11 and 12 I received only Herceptin. That will be the case this Friday also.

Next hurdle, on the 24th I must have another Echocardiogram to see if the Herceptin is having any adverse effect on my heart (which it is known to do). Then I'll meet with Dr. S. again on the 28th. My heart was in good shape going in to this, I can only hope and pray that it remains that way.

That's my story and I would like to hear from anyone with suggestions and/or support. I know everyone is different, but I find it "good for me" to talk or write about it.

I wear several bracelets: "LIVESTRONG", "MOTHERS, DAUGHTERS, SISTERS, FRIENDS", and "HOPE, FAITH, LOVE". My favorite of all is: "CELEBRATE COURAGE". Anyone who has gone through the rigors of different types of treatments for cancer will surely understand. Both mentally and physically it takes a lot of hope, faith, love, strength, and courage to face the next day. I'm happy to have another! God bless us all.

Deb1969's picture
Deb1969
Posts: 165
Joined: Aug 2009

Im 40 and always been healthy.I am also stage 4, I have mets to my liver. Just like you my breast tumor was to large to remove and lesions were widespread throughout liver. I had 6 rounds of Adriamycin/Cytoxen.Also had 7 weekly doses of Taxol, now I continue on with the Herceptin and Tamoxifen.Last scan in March was all clear. I go for another scan next month. My ejection fraction has dropped some since starting Herceptin. Had another Echo last week and havent heard back yet from it.
Deb

Marsha Mulvey
Posts: 597
Joined: May 2010

Wow! I can't believe we have so much in common. (I love your dog.) I've seen others write about starting treatment with A/C but it was not considered for me. I'm happy for both of us that our most recent scans showed improvement in the liver, that worries me more than the other affected areas. Of course I'm concerned with all of it. When were you diagnosed? For me the 2 weeks after diagnosis were the toughest of my life. Tests, appointments, more tests, more appointments and finally the porta-cath implantation. The following day, the chemo was started and along with that came a little relief and peace of mind. None of us know how the chemo will work for us but it felt good to be "on the attack." Have you had any problems with your fingernails? Both thumbs, index fingers, and middle fingers are turning dark in the nail beds. Some have written that they fell off! Hoping that doesn't happen. Staying hopeful about my treatment and the Echo this coming Monday, wishing you well with yours too. I'll see Dr. S. next Friday (28th) to hear the results and plan the next course of action, how about you, when do you learn the results? Please stay in touch, we can support each other. We all need to pray that things aren't complicated by heart problems, know that you'll remain in my thoughts and prayers. Marsha

Deb1969's picture
Deb1969
Posts: 165
Joined: Aug 2009

I was diagnosed on August 7 2009. My fingernails are actually pretty good, only difference are tiny ridges in them. I have an appt with my onc on the 26th to get results and Herceptin.
Have you had any surgerys ?, Ive found that to be a problem (noone will operate with the liver mets) Keep in touch and prayers to you.
Deb

Marsha Mulvey
Posts: 597
Joined: May 2010

No I've not had surgery and probably won't. As you said, this is due to the liver involvement.
You're about 6 months ahead of me in treatment but it does seem as though we're following along the same path. Tomorrow I go for my 13th consecutive round of Herceptin but NO Taxol again. It should have been my week for Zometa too but I don't know if I'll get that or not. Next Friday my chemo will resume, depending on the result from the Echo. Next Wednesday you'll be in my thoughts as you get the results from yours.
Just out of curiosity, what part of the country are you in? I'm in Evansville, Indiana.
STAY STRONG!

Deb1969's picture
Deb1969
Posts: 165
Joined: Aug 2009

Im from a tiny town in North Georgia called Blue Ridge.
Deb

jarichards
Posts: 1
Joined: May 2010

I had breast cancer and a mastectonomy in 1995 when I was 45. It returned in the fall of 2009 in my liver as stage IV. It was determined, after a two week wait on the biopsy, that I had HER2 type cancer and that it was the original cancer recurring. I started on Taxol and Herceptin in January. My doctor added Carbo mid-way through my chemo treatments. I'm looking at two more chemo treatments then a PET Scan to see how much cancer is left. My blood tests on my liver have been normal for the past 5 weeks, a good sign. I've notice a significant decrease in symptons with the taxol that last few weeks, other than my feet and fingers are becoming numb.

If the cancer is gone I'm hoping to only have to take herceptin, which my doctor said I would be on the rest of my life.

This is my first time to write about my cancer on the internet and would like to hear from others with similar situations. It's nice to know you're not alone fighting this dreadful disease.

Marsha Mulvey
Posts: 597
Joined: May 2010

Though I'm not going through a recurrence of cancer, we have a lot in common.
My breast cancer has metastasized to my liver and bones. Beginning on 2/26/10, I did 10 consecutive weeks of Taxol and Herceptin before getting a short break from the Taxol. Friday I had Herceptin and Zometa. That was my 3rd week with no Taxol. Monday I'll have an Echocardiogram to check on heart function. If all looks good, Friday we'll continue with Herceptin and add a chemo drug again but not sure which one.

My most recent scan showed a "significant reduction in size" of the numerous spots in my liver, certainly, I hope you get the same results.

I'm very new on the internet too. I think it's good to communicate with others facing such a similar situation.

Out of curiosity I asked Deb what part of the country she lives in, would you mind telling me where you're located? It seems as though this is the most common treatment for our cancer no matter where you live. Best wishes to you!

Lola7's picture
Lola7
Posts: 18
Joined: Oct 2012

I was just diagnosed with Stage IV  Breast Cancer  mets to liver about 7 spots - they started me on taxol today for 6 mnths  3 weeks on one week off a ct scan scheduled for 3 months.  I have no symptons so far of the chemo - but maybe too early -  I dont feel tired or sick - just worried the taxol is not strong enough?  what are your thoughts?

 

hope you are well!   Lola

Ladydi6365's picture
Ladydi6365
Posts: 26
Joined: Mar 2010

Hi Stephanie,

I am pretty new to this cancer thing as well but I was diagnosed with HER2 Neu+ cancer nodes clear have had my 3rd Chemo treatment and will be starting Herceptin next month or so
I have had a BLM w reconstruction in Mid Febuary and I am doing well as so will your sister.
No radiation needed for me thank the lord so make sure she has a great Onc because that is the most important person involved with her care. As I said have not yet started the Herceptin but my Onc said it was nothing compared to the chemo very minimal side effects
and the chemo has not been to bad either. Stay positive it really helps get thru this ordeal and she will need to stay positive as well
Hugs and prayers with you and your sister,
Diana

kimz57
Posts: 1
Joined: Jun 2011

I just found out I have breast cancer stage 2B (estrogen aggressive) in April 2011. Since then, I too am on my 3rd AC Chemo. I will have one more on the 23rd. Following that, I am to start Taxol and Herceptin. Taxol/Herceptin for 12 weeks, then Herceptin to finish out 52 weeks. Some time in between I am to have surgery. I know that are test (MUGA and CT Scans) etc that will be done. Does anyone relate to this treatment?

Rague
Posts: 3316
Joined: Aug 2009

This is a very old thread that was started 11 years ago and hasn't been posted on in over a year. There are a lot more recent ones to gain info from. Best is to just introduce yourself.

Based on what you said of your TX - it sounds like you're IBC. There are several of us here who are IBC - some TN. Me - I'm IBC but ER+ and HER2- so no Herceptin for me. I did 4 A/C 2 weeks apart and then 2 weeks later surgery, 3 weeks after surgery I started 12 weekly Taxol and a week after that started 25 rads and have been on Femara since a week into rads. Last rad was early March 2010 and i'm doing great!

Susan

tickledpink's picture
tickledpink
Posts: 1
Joined: Jun 2011

Yes - I had the exact same treatment. I was diagnosed with Stage 2A breast cancer in April 2009. I had bilat mastectomies with immediate reconstruction in April, started chemo in May - 4 cycles of AC followed by taxol/herceptin for 12 weeks and then herceptin every 3 weeks to finish out the year. My last herceptin infusion was in August 2010. I have an echocardiogram every 3 months and so far so good! I found the herceptin-only treatments to be well tolerated. In fact, I was able to return to running and ran a few races that year. Hugs to you!

ldpettit's picture
ldpettit
Posts: 127
Joined: Apr 2011

Hi there

I was diagnosed HER2 neu+ in January 2011. I have finished the 4 of the AC treatments. About to start the Taxol/Herceptin combo next week for 12 weeks. After I will have Herceptin for another 40 treatments and radiation.

I had a bilateral mastectomy in Feb and in process of reconsruction. Surgery for implants is down the road 6 months after radiation is completed.

Not sure I would have done the reconstruct now knowing the restructions with certain tests and how it doesn't allow a muga test to be read as clearly as it would without the spacers.

Not sure if that helps or relates.

Lisa

ladybug22's picture
ladybug22
Posts: 647
Joined: Sep 2008

i took hercedeptin for a year. would say it saved my life. I had breast cance clean now for over 2 years

MAJW
Posts: 2515
Joined: May 2009

This post was written almost 10 years ago, in 2000!

smend
Posts: 4
Joined: Mar 2011

Herceptin was the easiest part of chemo. No side effects (except they watch your heart function). No nausea, no neuropathy. They put you on it for a year so a port makes it easy to infuse. I wish your sister the best outcome.

irishrosebud
Posts: 10
Joined: Jul 2011

hi...i'm new to this...i don't know how to post something for everyone to read but my mom has been diagnosed with her2neu positive breast cancer with lymph node involvement and i'm trying to find out as much as I can from others that are going through it or have gone through it...Thank you!

Lola7's picture
Lola7
Posts: 18
Joined: Oct 2012

How are you doing???   I was just recently diagnosed with liver mets - had the lobular breast cancer left breast removed - but cancer had spread to my lymph nodes and 7 spots on the liver - very small -  doctor is not hopeful which really worries me -   I started taxol today for 6 months - one a week for 3 weeks and one week off - for 6 months   then going on AC if things look good   she hasn't put me on herceptin??  she says they will do a pet scan in 3 months - but her outlook for me is very poor which really worries me.

 

Need to know how you are managing  - keep well - looking forward to hearing from you.

 

Lola

New Flower
Posts: 4044
Joined: Aug 2009

Hi Lola

i am very sorry to say that both Marsha and Deb1969 passed away. They were strong women who lived normal life while being on Chemo, working raising children, supporting other cancer survivors. They both have proven their doctors wrong as far as how long they could live. We have others here who overlived prognosis. Please take deep breadth and believe in yourself. Wishing you a very successful treatment

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