her2+++,highly er/pr+

[Michelle]

Ladies,
Just wondering how many of you also have this diagnosis, and how you are doing?Have you reoccured, are you NED?I'm in the process of finishing up my taxol/herceptin combo.Still have more herceptin, and rads to do. Also, I'am premenopausal and wonder which hormone blockers everyone is using.I would love to talk with other women with my same diagnosis.This site is a blessing for those of us who are her2+.
Michelle

[karen w]

Hi Michelle,

I am stage 1, 1.3cm tumor, node negative, er+ pr+ (weakly positive), grade 3, Her2+++. I finished dose dense, AC/T 4 weeks ago, I am in my 2nd week of rads (34 total) and I am going in on Monday for my second Herceptin infusion. I am also (or was) premenopausal, however, since starting chemo it appears I am in menopause. I will probably do the lupron (sp?) shots and take one of the Aromatase Inhipitors. Next year when I get my port out, I will have my ovaries removed at the same time.

You are right, this board and the women on it are a blessing.

Karen
l

[AlaskaAngel]

HER2+++, highly ER+, highly PR+ here, premeno initially at 51, then postmeno after chemo and tamoxifen x almost 2 years. NED, 3 years out from treatment, 1.6 cm IDC plus some DCIS, stage I, no Herceptin, wondering if I am a sitting duck.... Can some of those who answer also say whether you have had/are getting Herceptin, and how far out you are?

AlaskaAngel

[jojo]

Hi Michelle,

2 years ago, I was stage 3c at her2+++, 40% ER+, 20% PR+, 17+ nodes out of 18. Neo-adjuvant. I had the same combo as you: Taxol & Herceptin (weekly).

Still on Herceptin indefinitely, since I recurred to a brain met a year later (no symptoms at all, an MRI picked that up), and then cancerous supraclavicular nodes. Gamma knife, craniotomy, radiation seeds treated on brain met. Nodes stable on close watch for monitoring. NED on rest of body.

Becuase of the brain met, I am stage 4. First brain MRI follow-up was clear, will have another MRI in Sept, I think.

As for AI's, I started off on Femara, recurred on that 6 months after, switched to Faslodex, stable for 6 more months, then currently on Aromasin for 8 months, still stable.

Good luck! :-)

[lor]

Michelle,

It sounds like we are in the same boat. I am slightly er+ and highly pr+ and her2+++, I had a grade 3 tumor, lumpectomy and 8 of 18 nodes positive (stage 3a). I am on my 7th week of taxol/herceptin after finishing the 4 nasty rounds of AC. I will continue on Herceptin for a total of one year.

Like you, I have been wondering what kind of hormone treatment to do. My doctors will do what I want, but they recommend the tamoxofen because there is not enough info for them to comfortably give an AI. I don't know if this chemo has put me into menopause or not. This is the first month that "my friend" did not visit. I am hoping that I am menopausal and that will answer my tamoxofen vs. AI question.

I think you have asked a very good question and I would like to chat with those who are like me, too. It is nice to be able to compare treatments and ideas. It is very confusing on what to eat, what drugs to take etc. I am 32 years old and would like to know how I got this rotten disease at such a young age. I don't overly drink, I don't smoke, I avoid known carcinogens. (Sorry, just doing a little venting.)

At this point in my treatment I and my doctors are very optimistic about my chances of no recourance in the next five years. I was told I have about an 85% chance of no recourance in the next five years. I pray for that every day. However, if by chance I fall into that other 15%, I know there is a lot of hope. This site gives us all hope and important info.

Feel free to email me if you would like to chat about anything.

Hugs,
Lori

[sassy]

Michelle,

I too am her2+, er+,pr+, 5 of14 nodes, had left mast, had 4a/c and had 8th taxol/herceptin today. I am 46 and was premeno. I am currently experiencing all the joys of entering menopause, and at my age it will probably be permanent. I will go on an AI after Herceptin. Since you are much younger, you may only be menopausal temporarily. Your doctors will be able to test you for your status and help determine if tamoxofen or an AI is appropriate. I am certainly not an expert, but this is what I have learned. There seems to be no rhyme or reason for many of our breast cancers. I too was blindsided. Healthy living and NONE im my family. I was the lucky first.

You and I are very fortunate to be in the right place and time to receive what seems to be the optimal Herceptin treatment. A difference of one month either way would have changed everything for me concerning treatment.

This site has been a constant source of information and support. I thank everyone that has been and will continue to be of help. I'm sure you will find it to be the same.

Good luck and have Faith.

Sassy

[Montana]

Highly ER/PR+; Her2/neu was 3.6 measured by ICH; I never saw a FSH test; stage 1, grade 3; 0/14 nodes and < 1 cm. Finished chemo about March 1st and 33 rads on June 1st. I'm on Arimidex now but my onc did not prescribe Herceptin for me. (Because of no nodes??) I was 54 and taking HRT (10 years...who knew???) so I was already in menopause.

Sue

[karen w]

AlaskaAngel,

I have read a lot of your posts. I am stage one, just like you and I am receiving Herceptin. I am going in for my second infusion on Monday and I am 4 week out from last Taxol. There is another woman on this site who, like yourself, is a couple of years out from treatment and she is going to receive Herceptin. I'll see if I can find her post for you.

Karen

[*_cheryl_*]

All 3 opinions I received were adamant that I had a much better survival if I remained postmenopausal post chemo and able to take an AI. All 3 also said being er/pr+ and her2+ was not even a candidate for Tamoxifin. They highly suggested that I take action so that my periods would not return after chemo. Choices were lupron injections or having ovaries removed. I took lupron every 2 (or 3) mos. as soon as my chemo ended until I had my ovaries removed 6 mos. later. I was done having kids, so the decision was easy for me and the oopherectomy was easy!!

Just the other day, I asked the onc what happens after 5 years on Femara and he said M.D. Anderson has released positive studies over 8 years and feels that by the time I reach 5 years (3more) that the standard will be 10 years!!

[Becky]

I am only "moderately" hormone positive ER 50% and PR 5% but I was determined postmenopausal via chemo (confirmed every 3 months with FSH/LH bloodwork - its done when the 27/29 are done). However, it was just discovered I have 2 ovarian cysts on my left ovary and my gyno wants to remove both so I won't have that problem of worrying on whether I will revert back (I am 46 and was premenopausal before). This will be done in a couple of weeks. Currently, I am on Arimidex and still receiving Herceptin weekly (via the trial recommendations)


Becky

[Michelle]

it sounds like most of you have had the ooph, or are using the AI's.Cheryl, I have also heard that tamoxifen and herceptin do not work well together. How were your symptoms on lupron?Also, why do we have to continue on AI's if we have the ooph?

[Michelle]

Lori-

Would love to email you, but not quite sure how to do it from this site. i will try to figure it out, or you can email me in the meantime.
Michelle

[Becky]

The reason you still need an AI after oophorectomy (if your bc is hormone positive) is because your adrenal glands and body fat still manufacture estrogen and the AI specifically inhibits estrogen production in these 2 places (and only those places). This is why you must be postmenopausal (or have the ovaries removed) to take an AI because AIs do not inhibit estrogen production in the ovary.

Best regards

Becky

[AlaskaAngel]

Question for all those in this group -- and Joe: I think it could be interesting IF chat works at this site, for this group to meet, say once a month, if we can set a date/time that we can all remember? (Anybody know a particularly lucky number?) Feedback is welcome (Joe?)

A.A.

P.S. Karen W, is the person you are thinking of Janet/FL?

[Doris]

I am almost a year out Stage 2, IDC, Her+++,node neg. strongly er+. Pr+. I had a lumpectomy, then only 4 AC treatments, 33 rads. I am on Armidex. My onc. will not give me herceptin. He said if I were diagnosed today he would give it to me. I am going to see another onc I think. I am NED, but I feel like a sitting duck.

[karen w]

AlaskaAngel,

Yes, Janet/FL is the person I am thinking about. Chat once a month would be great.

Karen

[Jan]

I was stage 2a, her2 pos., hormone pos, i node. This was a bilateral breat cancer not a recurrance, a different type. My first breast cancer they didn't do her2 testing so I took tamx. for 5 years. This second cancer had mastectomy, dose dense chemo, herceptin and am on femara.
My first cancer was pre men, second post men. I finish 1 year of herceptin in a few weeks. My marker is good and so far no signs of recurrence. I am 53. Hope this helps!

[Monica]

I'm high ER+, pre-menopause, but not taking tamoxifen or anything else. I'm almost 47 years old, but unlike most, as soon as I finished my chemo, I went back to pre-menopause. I was diagnosed stage 2a, very high ER+ back in November 2003. In January 2003 I had some neurological symptoms that made my neurologist believe that I have MS. I tried tamoxifen, but I found my MS got significantly worse. So, I've decided not to take tamoxifen because I believe and some studies are showing that estrogen counters MS progression. My doctor now wants me to get my ovaries removed, and I'm refusing. When I tried tamoxifen, within a week, my legs became painful and numb, among other neurological symptoms. I think lupron or ovaries removal would do the same thing. Very luckily I got on the trial with the herceptin/taxol arm back in 2004, and I am just praying for the best. I will add I'm feeling great. I love having my hormones. Nevertheless, it's a terrible trade-off for me to have to make - increase my chance of recurrence substantially versus becoming permanently neurologically impaired. Hopefully, everything will turn out okay.

Best,
Monica

[*_Bevie_*]

Hi Michelle, I am strongly ER+ also HER2+ I was dx little over 4 1/2 yrs ago had 4 A/C chemo's 2 CMF chemos 28 rads I was on Tamoxifen 8 months and have been taking Arimidex for 3 1/2 yrs (taking a little break because of joint pain and newly diagnosed arthritis) so far so good.... hopefully I am just about out of the woods.

[lor]

Alaska Angel,

The chat idea is great. Evenings work good for me.....(6 to 11 EST).

Lori

[al from canada]

Dear AA and cheat girls,
As far as I know (just what I've heard) the new "improved" site should be up and running very shortly and it DOES include a working chat line.
Al

[sassy]

Chat line would be wonderful. Message boards are great, but looking forward to chat.

Sassy

[Michelle]

Can't wait to chat
michelle

[*_sally_*]

I am also dx HER2+++ erpr+++ stage IV 8/16 nodes + also a spot on my liver. I did my Carboplatin/Taxotere/Herceptin for 6 cycles. Once every three weeks. Then I had 33 radiation treatments. After radiation was complete I went back on Herceptin every three weeks. At first I was getting Lupron shots every three months. I had two of these shots and decided to have my ovaries out instead. I am 37 years old and started menopause at 36 due to the chemo. I am on Femara also. My doctor said that the Femara was the better drug for fighting this very aggressive disease. I was diagnosed march 2004 and I have been NED since October 2004. I hope some of this information can be of help to you. Good luck and take care. Sally

[Unregistered]

Ladies-just wanted to bump this thread up to see how everyone is doing? Would love to set up a chat time. How about the rest of you?
Best wishes-
Michelle

[AlaskaAngel]

I'd love it too. I was hoping to jump in with Al's suggestion for chat earlier but missed it. What is the best time? Say Thursday 5 PM PST / 8 PM EST? or ?

A.A.

[sassy]

Just to update, Have finished taxol, herceptin, will have fifth herceptin only this week, start radiation next Monday. Had check up with onc today, all is well.

Keep the Faith,

Sassy
________
GLASS PIPE PICTURES (http://glasspipes.net/)

[Unregistered]

Thursday 8pm est works for me.
Michelle