New to site: ER-, PR-, HER2+

cocacolakid2001 · 03-09-2006, 05:05 PM

New to this site but have so many questions. Can I start with asking for anyone with a similar diagnosis to give me some insight, any insight, into what my future might be? I'm very confused right now. I have a positive attitude about treatment but just can't help but think about "final outcome" could possibly be. I have a little boy that I so want to see grow up.

I seem to read so much about the "bad things" relating to other similar diagnosis to mine. As in I feel like I've been given the official "death sentence" I am halfway through chemo (FEC combination) and will start Herceptin, Carboplatin & Docetaxel next week. I seem to be finding more "bad" about the side effects of these drugs versus the people who are having a "good" reaction to these drugs (ie. side effects).

Diagnosed ER-, PR-, HER2+, stage IIIb, T2, N3c, Mx--poorly differentiated ductal carcinoma

Any insight would be very much appreciated!!

Christine · 03-09-2006, 06:09 PM

Coke
I welcome you to our support group. Please feel free to read our many pages and get familiar with our message boards. It will help you to know more and will be better able to not only speak to your oncologist, but also communicate on-line. The more you use it the better you are. Ask as many ????'s as you want; and for sure you should get other members to reply. We are a team, all sharing our good and not so good results. That means we try to give you confidence thru our own breast C ancer expieriences with Herceptin as well as other Chemotherapy. Herceptin is a wondweful gentel drug that works well with other chemo drugs. Other chemos can have side effects and if you give us your medical profile, I'm sure you will find someone here who would be glad to reply.

Hope you do't mind your nickname
also.....please register and e-mail us your picture if you would like.
Hugs ....Christine

Bev · 03-09-2006, 08:18 PM

Hi, welcome. I don't have the same diagnosis or treatment. It sounds like you're interested in statistics. You might try cancerfacts.com. I haven't been to the site for awhile, but I think you fill out a questionaire and then they direct you to studies that show relevant treatment outcome studies. It's tedious but...I guess we all have the same curiousity. It is a .com and not a .org.

Do come back to this site though, because after you read everyone's stories, you'll see you're not just a number. There are plenty of people doing better than their number would suggest. Good luck, BB

sherri · 03-09-2006, 08:23 PM

Dear new member,

My dx in December 2004 was very similar and worse than yours. First I thought I won't be around even for a year but then I learned they are many people who survived many years and Christine is one of them. I joined this group and found hope, knowledge and courage. Herceptin has changed her2 positive outcome a lot. You will be fine, just stay positive, learn from others and fight these terrible disease. We are the end of Brease Cancer! We will celebrate your son graduation from Univeristy, don't worry.
Big hug,

Lolly · 03-09-2006, 10:36 PM

Hi, and welcome to the board. It's so great you'll be receiving Herceptin as part of your adjuvant treatment! This should go a long way towards staving off a recurrence. Your docs are to be commended.

You are bound to be full of questions and fears at this point, but just try to focus on your treatment and on staying as healthy as possible during the process.

We'll always be here for you, but as to predictions that's never been something I've worried about since diagnosis, and I think you'll feel the same a year from now. Statistics don't really apply to us Her2'ers, we're too busy writing the next chapter!

<3 Lolly

cocacolakid2001 · 03-09-2006, 10:46 PM

Thank you all for your replies. I really do appreciate them. I had forgot to add to my initial message that I was two days short of my 37th birthday when I was diagnosed. Yep, happy &^%$# birthday was about all I could say there for a couple days, LOL!

I should also add that my name is Sherri (I haven't quite figured out how to change my username yet. Please bear with me.)

cocacolakid2001 · 03-09-2006, 10:54 PM

Sherri,
You say your diagnosis was very similar to mine, would you mind giving me a bit more info on what has happened to you over the course of your treatment? I am becoming really anxious about my next "blast" with the Herceptin, etc.--especially with it being spread-out over two days.

Sherri

03-10-2006, 02:35 AM

Hi Sherri. I am so sorry to hear about your diagnosis, but hang in there. I don't have quite the same diagnosis. I am stage IIIA, ER/PR -, Her2 +++. I was diagnosed less than a month after my 36th birthday and I have a 2 1/2 year old little girl who I feel the same way about. I get sick to my stomach thinking about the fact that I might not be able to see her grow up, but I will. At the beginning I read every statistic on the web and all I did was get sad. Then I found this website and read all the inspiring stories of these surviving women who are fighting this disease and winning. You will find a wealth of wonderful women and a lot of great information here. I really don't know what I would do without this webstie. They have helped me so much. If you have questions or need to vent this is a great place to do that. We all understand!

My onc told me not to read all the websites and get caught up in the statistics. Most of these statistics were written before the use of herceptin!
As far as the side effects, they effect each person differently. With the exception of a few minor ones, I have been able to live a fairly normal life.

Please keep remembering that you can win this battle and we will both see our children grow up and dance with them at their weddings!

Christine MH-UK · 03-10-2006, 01:46 PM

Hi Sherri,
I wouldn't look at the general stats at all, since your treatment is really cutting edge. I think that in the closest trial to it, which used adriamycin instead of epirubicin, an amazing 7/8 women with stageIIIB had a complete response, including knocking out any tumours in their lymph nodes. Adriamycin is harder on the heart, which is probably why your doctor has made the switch. This trial was presented at the San Antonio Breast Cancer Symposium in December 2004 and was carried out in California, but that's all I remember.

I found FEC really rough, but with a six-month old baby at the time and ER-,PR-,HER2+ cancer, I had to do whatever was possible, so it was 6 rounds of FEC (hard) and 4 of taxotere (easy) and now a year of late herceptin. I am still doing well two and a half years later, much to my oncologist's surprise, and my treatment was much less advanced than yours.

Best of luck,
Christine

lkc Gumby · 03-10-2006, 02:53 PM

Hi Sherri,
I am a stage IIIC. I have finished dose dense AC and Taxotere and 7 weeks rads.
I have about 6 mos left of weekly herceptin.
I am not at all unhappy that I am her2 pos. Herceptin has consistently shown to reduce the chance of recurrence so I am extremely thankful we HER pos girls can get it.
I also don't read the stastistics as they are very much oudated.
I find it ironic that when I graduated from nursing school I worked for an oncologist ( back In 1979) All I can say is I am thankful that if I had to get BC, I got it now and not back then when options were really limited.
There is so much hope for us now.
Keep the faith.

Linda

03-10-2006, 05:09 PM

Thank you again to all for your responses, I really do appreciate them. As terrible as it is, I am almost relieved to hear that there are actually other out there around my age that have been diagnosed with bc. From what I have read and continue to read, I was starting to feel like I was the only "younger" person to be ER/PR-, HER2+.

Can anyone else give me any better idea as to the side effects they have suffered in taking the Herceptin, Carboplatin & Docetaxel? Has anyone else had these three drugs all at the same time?

cocacolakid2001 · 03-10-2006, 05:12 PM

Darn it! Sorry about that, I just realized that I had not signed in--that last post was from me, Sherri.

madubois63 · 03-10-2006, 05:39 PM

Hi Sherri - Yes - I've been doing that combo for nearly 17 months. I have been getting the chemo part 3 weeks on, one week off and the Herceptin weekly. The Herceptin alone is very tolerable, but I do find that I need Imodium a few days after treatment. The carbo and Taxotere is harder, but it does get more tolerable over time. My hair thinned (a lot), but I wore pageboy type hats and no one knew. After a few months, my hair grew back. No loss of eye brows, lashes or leg hair...They pre-med's on the day of chemo make me sleepy (benadryl) during the treatment and speedy and hungry (Decadron) through the next day. Ask for a prescription for Ativan, Xanax or Ambien for the night of chemo. Also go home with samples or a prescription for nausea med's. Start taking it the next day and continue at least through the third day. I always feel the worst on the third day. Everyone is different, but many people say day three is the worst. Drink LOTS of water and eat several small meals. I always have ginger ale, black licorice (the string kind - not the sugary one - more natural the better), pickeled or crystallized ginger and camomile tea on hand. I also go to the oncology center the following day after chemo for hydration and extra IV nausea med's, but I live five minutes away from my center. If you have specific questions, feel free to e-mail me at madubois64@aol.com

cocacolakid2001 · 03-10-2006, 11:16 PM

Now that I'm halfway through chemo (FEC) I was scheduled for a further ultrasound and MUGA scan today. Ultrasound technician said my "lump has disappeared". It was almost 2 cm in size when I started chemo. I will wait to hear what the official word is from the oncologist of course, which will be next week. No word on the results of the MUGA scan today, I guess I'll get those results next week too.

tousled1 · 03-11-2006, 06:47 AM

That's wonderful news!!! Seems that the chemo is doing it's job.

SherriT · 03-11-2006, 01:14 PM

Yes, I was pretty happy to hear the word "disappeared" as well. Now I'm just hoping that ALL of the nasty "C" stuff has disappeared. I guess my next step after all of this is trying to decide what I'm going to do surgery wise--remove only one or remove both. The saga continues I guess...

SherriT · 03-11-2006, 01:18 PM

Hello Madubois63.

You said "... After a few months, my hair grew back. No loss of eye brows, lashes or leg hair...".

I was wondering if my hair might actually grow back during the Herceptin/Cisplatin/Taxotere treatment?

By the way--"cocacolakid2001" has been changed to "SherriT" now.

madubois63 · 03-11-2006, 01:30 PM

Sherri - Yes. I cut my hair short and donated the hair (made me happy), started treatment and then my hair thinned. Not all of it fell out. As my body got use to the treatments, my hair grew back. I had two lengths of hair - the old/long and the new/ short. After a few months, I was able to cut my hair to the same length...

SherriT · 03-11-2006, 04:47 PM

Well here's to hoping that my hair starts growing back during these next four 'blasts'!!

I see that many people get Benadryl before getting ?Herceptin?--is this usually the case? I just don't recall my onc. mentioning Benadryl but maybe he will at my pre-chemo appointment on Tuesday.

Lyn · 03-12-2006, 06:47 AM

Hi Sherri, and welcome from the Dinosauer, I think I am the one that starts with the letter "A" Annadah it think, anyway the nice old one, my now 4 year old grand daughter labelled me that one when we were playing at some stage, and she has been ripped away from me/us, and not through this disease but because her mother of 26years young, decides she now wants to be single again and have a LIFE!! they have both been in our family for just over 3 years and not has she only cut my son out of their lives, but his family as well. Haley isn't even a biological grandaughter, she is much more, we love her to pieces. I was diagnosed and commenced treatment in July 98, and haven't stopped since, I was given 2-3 years at best back then, that was a relief I was planning on going home and emptying out my wardrobe for the charity bin and cancelling my new specs. Today my Oncs just say it is a miracle I am still here and I don't even look sick, and for me to tell them what I want next, at last I have made a difference somewhere in life instead of just existing. I believe that as a result of Herceptin my BC has mutated and a big question mark for what to expect, I was about number 30 something up the Hercptin recepients list in Australia over 4 years ago now, and there are always tomorrow that come along with a new drug, so I am not nervous, I definately have a Pity Party for a day or so when I get bad, news then I just have to jump back in the pit and dive for another apple. I was 43 when first I found the lump and here I go again more treatment to start this week.

Ask away, whatever you like, when ever you like,your concerns, fears, info, laugh with us, cry with us, there is usually someone around the world logged on at any time of day, and brilliant how we get info when we are sleep and wake up to a new positive post with input. We even discuss intimate problems, but we can't see you blush unless you tick the blusing icon.

Love & Hugs Lyn