Anyone ER+/PR- and HER+???

Ivylane · November 2008

I don't see this often and was curious if there are others on this board with this particular pathology.

lexislove · November 2008

I'm ER+ and HER2 +, just finished my year Herceptin on monday. Fell free to ask questions Smile

SpunkyGirl · November 2008

Yes, Ivy, I have that pathology. I don't see it too often.

Ivylane · November 2008

Thanks for the responses. What treatments did you ladies do? I had ACT, a year of Herceptin and now Arimidex for 5 years.

SpunkyGirl · November 2008

Ivy,

ACT is followed by Herceptin is the standard. Although I am premenopausal, I elected not to get an oopherectomy, so I'm on Tamoxifen. How are you doing on the Armidex?

Bobbie

sandee107 · November 2008

Hi Ivy,

I'm ER+/PR-/Her2+. There's a few of us on the boards, but not many. I had a lumpectomy last May followed by 7 weeks of radiation (finished in August). I am currently on Femara for 5 years. No chemo or Herceptin. My onc did not think the benefit outweighed the risks since I was node negative and tumor was less than a cm and mostly DCIS. Just went back to see my surgeon for 6 month check and will not need mammo until April.

Sandee

lopsided_blogger · November 2008

Hi,

That's my pathology as well. I did ACT, Herceptin for a year, 6 weeks of rads, and now 5 years of tamoxifen.

Take Care,

Peggy

Ivylane · November 2008

I was node negative also, but since my disease was multi-focal I was told I really needed the chemo. Plus it was my second trip down the BC road. I had it in the opposite breast 15 years earlier. At that time I was ER/PR weakly positive and Herceptin negative.

Misty1 · November 2008

I had a .6mm with clean nodes. Had a mast. with immediate reconstruction in July. My onc was on the border about chemo. A second opinion from another onc said absolutely. So, I went back to the first onc and did 4 TC TXs. I had Herceptin at the same time. I finished on 9/30 and am now going every three weeks for just the Herceptin. I am starting Tamox, probably on T'Giving. I just had my exchange surgery the other day for the implants.

Take care,

~Misty

Ivylane · November 2008

Spunky: The Arimidex is not too bad...aches and pains mostly...I can live with it.

lexislove · November 2008

I did ACT X8 and the year of Herceptin. I'm currently taking Tamoxifen, Lupron and Zometa.

jill323 · November 2008

Hi Ivy -

I am also ER+ (only 22%), PR- and Her2+. In the middle of a regimen of Taxol/Herceptin at the moment. Got two more treatments to go for Taxol then it is off to radiation and then Herceptin every three weeks to complete the year. For me, the Herceptin was a no brainer given the very strong Her2/neu results (confirmed by FISH at 10.0). Still trying to figure out if it is "worth it" to go on Tamoxifen/AI's after all this is done given the relatively weak ER and the PR neg. score.

Jill

Ivylane · January 2009

Juat wanted to bump this thread...how are you doing Jill?

mooboojack · January 2009

I too was multi focal Er+ and Her2neu+ I had 6 rounds of TCH and am now on Herceptin until April, and Femara for 5 years. I feel stripped of all Estrogen and feel dry, moody, joint stiffness etc. Is anyone else on Herceptin and Femara?

Does your libido return???

Did your onc add the dimensions of your foci to stage you, or were you staged by the size of the largest foci?

mooboojack · January 2009

Ivylane,

Did you have chemo the first time 15 years ago?

Stay healthy,

mooboojack

helena67 · March 2009

Hi

Just happened to stumble on this tread - I have a similar pathology so I wanted to add myself to the list...My question is unrelated to pathology but more has to do with feeling well. I finished radiation about a month ago. Chemo before that. Currently on Herceptin and also an aromatase inhibitor (after an oophorectomy). Have small children. I just still feel pretty tired and low on energy. Don't feel like doing anything that is not needed. I don't know if this is a remnant of the chemo, the radiation, or maybe a side effect of the Herceptin or the AI. Or maybe just a mental thing. Best guess of course is that it is a combination of all these factors.

For those of you who are out longer than myself, how long did it take before you felt you had your old energy level back? Maybe it's too much to expect to feel good NOW but it would be nice to know that in 6 months from now (for example) all will be well...

Thanks for chiming in..

bre · March 2009

This is my pathology also. Had mast, 4 a/c, tamoxifen for 10 months, switch to arimidex, hysterectomy and oopherectomy. Doing well 5 years later. Didn't have herceptin available at the time. My energy level came back slowly, helena. Gradually had more good days than bad but it took quite a while. Also had trouble with constant low level anxiety that I had to work through that affected my sleep and therefore energy level.

susiered · March 2009

I am also er+/pr-, her2+. I don't understand a lot about it. Is it more aggresive? Does anyone know? I would love any info you have.

helena67 · March 2009

I think it's most likely the HER2+ that makes it aggressive. So I don't think that ER+/PR-/HER2+ is necessarily more aggressive or less aggressive as compared wtih triple positive ER+/PR+/HER2+. Overall, it is probably 'better' (if one can use that expression) to be strongly ER and PR positive and HER2+ negative because that is a sign that the tumor cells are more resembling normal cells (less wacky) and tend to grow more slowly (less aggressive).

There are some reports indicating that HER2+ tumors are perhaps less responsive to hormone therapy compared with HER2- tumors but then we have the Herceptin to counter that. I asked my Onc about it and he did not seem to worry about it. To him, it was sufficient that it was hormone positive. That's all I know at the moment.

vivo · March 2009

My mom is ER+PR-and HER2+...she is now on chemo and herceptin and next week she is will be done with the first 3 cycles of chemo. Docs said it is agressive but they are waiting for the cancer pointers next week to see how it goes so far... I wish the BEST! I wish there will be the miracle...

I'd like to ask you what ACT is about because my English are not so good (is it a protocol of chemo?).

helena67 · March 2009

It's a combination of chemotherapy drugs. The A stands for Adriamycin (which is a brand name for doxorubicin), the C for cyclophosphamide and the T stands most likely for Taxol (a brand name for paclitaxel) or possibly Taxotere (a brand name for docetaxel). Most likely Taxol but Taxotere is a drug very similar to Taxol. These drugs are commonly used for breast cancer. Sometimes they are administered every 2 weeks and sometimes every 3 weeks, for example, depending on what the oncologist thinks would be best.

CaseyDoodle · March 2009

I am also ER+/PR- and HER2+, although the estrogen-receptor was only positive in 72% of the tumor cells. Not sure what that means.

I did Taxotere, Carboplatin and will finish Herceptin in July.

ipohgirl · March 2009

Hi there ladies,

I have the same receptor status, but for estrogen, it was only mildly positive (20%) so my onco said I might not need to go on aromatase after the chemo is done. I am stage 2a with a grade three tumour. Will go for second cycle this Thursday for TCH. I haunt the TCH thread which is hugely popular since the ladies are real darlings.

Onco said the important thing was to tackle the herceptin condition which is strongly positive in my case. Also, I had bifocal (insitu mixed with invasive) and though I was node negative, all three oncos consulted recommended chemo plus herceptin though some had different opinions about the estrogen inhibitor. I am post menopause, so not very keen on the aromatase since some friends had terrible SEs like very thin hair and weight gain.

Many friends shared that diet and exercise would be the key on how long we can stay NED.......

But those of us who are on heceptin know that the drug cannot penetrate the brain barrier, so chances of metastasis to the brain is very real. But then we could go on to tykerb (whcih I asked for but was not given) sicne I figured out that was more effective than herceptin.

Anyway...........

Hugs,

Ipohgirl.

flower14 · June 2009

Hi ipohgirl,

How did you determine tykerb is better than herceptin? I just had 3rd dose of weekly herceptin and had a reaction. They are going to try again on monday June 8th 2009. I just started to research tykerb.

thanks.

lovetosail · November 2009

Hi all,

Bringing this thread back up - I am ER+/PR-/HER2+ and have the chance to participate in a neo-adjuvant clinical trial with 3 arms: (1) TCH (2) TCH+Ty (3) TC+Ty - you are randomized to an arm. In each arm, 6 cycles of treatment, then surgery, then herceptin alone for 7 months. Would you do it? Why or why not?

thanks very much for your insight and experience,

Best,

Sue

CoolBreeze · November 2009

I fit the criteria. I would have done it. I very much wanted neo-adjuvent therapy, because I was hoping to shrink the tumor down so I could have lumpectomy.

It would have been a mistake for that particular reason - we knew I had multifocal cancer, but it turned out I had much more widespread cancer than was noted even on MRI - I had the IDC, ILC, plus DCIS and LCIS. I had ADH cells in the nipple. I had four invasive tumors when we thought just one. (All but one very tiny though, under a cm.) No way could I have had a lumpectomy.

Other than that reason, I wouldn't have felt strongly for or against neoadjuvent therapy. I do believe in participating in clinical trials and have done some myself numerous times (for migraines).

I wouldn't do it without an SNB first though, to get proper staging.

As for the therapies - none are far off from what is standard for people with our status - I don't think it's a risk to your health. And, your participation might make treatment easier for women down the road, so having been given the option, I would likely have done it.

ktr3 · November 2009

Hello,

I am Er+her2+ since July 2005. I have had 4 rounds of chemo and 3 years of Herceptin. Also 39 rounds of rads. I finished my herceptin treatment this last August and finally have my PIC line take out. I receive an injection of fasolex every month and also have blood drawn for a CBC every month. So far, everything is okay.

I am hoping that the further away I am getting from the herceptin, the better I will feel.

Take care

wherebluesky · December 2009

hello all,

I was IDC triple negative, node 0/13 , stage IIa, left lumpectomy, chemo/ radiation completed since 2002 at age 36. this year's check up and biopsy found left breast cancer recurrency then followed by left breast mastectomy and reconstruction on Nov 19, 2009. now report are: ER low+/pr-/her2 +, IDC 0.6cm, DCIS, lymph nodes n/a. any treatment suggestions and why? what is the rate for 5 year survival?

thanks a lot for your insight

wherebluesky

KAJDerby · December 2009

I was just given my diagnosis last week and will have surgery on Friday, Dec 11. The doctors here in Okinawa don't talk much about the differnent drugs. I will have to do much more reading. the HER2 score scared me when the doctor talked to us. It is encouraging to read the posts on here. The doctor did say I would have chemo and hormone therapy. ktr3, is that 39 rounds of radiation? Sounds like you have had a long battle.

LINDAGARSIDE · February 2010

Hi Lexilove,

I am Per and ER positive (100%) and may be Her2 positive as well. Right now my Her2 test shows as "equivocal" and now I'm waiting for the results of a FISH test.

I am thinking that this might mean I will need chemo. Have you heard of women having an equivocal result from the Her2 test and then taking chemo regardless of the secondary test?

Four out of seven kids in my family have developed a cancer in the past 6 years. I am the fourth. My siblings have very serious cancers...mine is of course serious but not to the same degree as theirs. None have breast cancer. There is also no cancer on either side of the family...our family is the first to show signs of cancer.

tbrock77 · February 2010

i was ER- and PR+. that got me 3 years of Zolodex(Prog blocker given to prostate cancer patients) which really didnt stop a recurrence in NOV 09 which led to bilateral mas. still recovering from surgery but no more meds needed!!

Anyone ER+/PR- and HER+???

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