meltdown

gumoore · 10-31-2006, 07:29 PM

Today I FINALLY got the word that I'm HER2 positive (not sure where on the scale yet, didn't ask because the brain just froze). I've actually made it through 4 chemo treatments, with 4 to go (and we needed the HER2 status for the next 4 as they can add herceptin with the taxotere).

There are things in life that just aren't fair and this is definitely one of them. Isn't it enough to battle IBC? Isn't it enough that I'm diabetic? Isn't it enough that I'm ER positive as well? Do I need any more complications?? NO, darn it, I don't.

And I made the mistake of trying to find out more about being HER2 positive. Why is the news available on the web always the most depressing sort?? All I accomplished is scaring myself worse.

Please, I could use to good news.

I know I'll have to talk to my medical oncologist some more, thank goodness I see him on Thursday.

I'm sorry, I have got a serious case of poor, pitiful me.

Joe · 10-31-2006, 08:56 PM

Gayle,
There are several women on this website who are HER2 positive and are continuing to enjoy a good quality of life with an excellent prognosis. Christine who founded this website was first dx'ed in 1990 (they didn't even know about HER2 then). She had a recurrence in 1999 including brain mets and was declared to be in complete remission in 2001 and is still cancer free today. She is also diabetic. Another member who was dx'ed with IBC in 2001 and is HER2 +, has represented us at the San Antonio Breast Cancer Symposium since 2004 and will again accompany our group this year. She recently entered a clinical trial of Tykerb which has shown much promise in controlling IBC.
Also accompanying us will be woman who has been on Herceptin since 1995 and again has an excellent quality of life and a great prognosis.Their stories and those of others can be found in the "Community" section of our website.

Much of the current research is aimed at controlling HER2 positive breast cancer and we will all benefit from this research.

No longer are women who are HER2 positive the ugly stepsister of cancer treatment.

Warmest Regards
Joe

rhondat123 · 10-31-2006, 09:23 PM

i am her2 pos i am 34 stage 1 mammory carcinoma exbiopsy lumpectomy snb test 1.7cm in size exbiopsy got it all all test no mets i star your treatment tomorrow and getting port doctor called me today to say i have excellant prognosis and am lucky to have this kind since the herceptin im earlt stage and mine is preventative but looking at over a year of treatments because of her2 and age sounds like alot but doctor seems excited for me says im so lucky so maybe its not a death sentance i hope not

gumoore · 10-31-2006, 09:33 PM

Thank you Joe. Just what I needed to calm down a bit. Just when I begin to really think positive or am coasting along, I get my feet taken out from under me.

Tom · 10-31-2006, 09:34 PM

Dear Gayle,

You have many good options for treatment due to the receptor status of your cancer. You have Herceptin and Tykerb for your HER2+ status, and Tamoxifen and the aromatase inhibitors for your estroigen receptor status. I will say to you and Rhonda, that if you had to get breast cancer, you couldn't have picked a better time to do it. The number and quality of treatment options is growing at a tremendous rate.

Joe is not offering false hope to you when he speaks of the success stories. He and Christine have provided a "home" for all of us and their loved ones, who are dealing with this rather quirky form of cancer. It is a strange being, but one that is much studied, and suddenly very treatable in many situations. Both of you hang in there and read posts on this site as often as you can. This site is perhaps the single best source of both information and inspiration. We are all in this together.

Sincerely,
Tom

Vanessa · 10-31-2006, 09:43 PM

I just wanted to let you know that I was diagnosed with Stage iv breast cancer in April, her2 positive. I began taxotere, carboplatin and herceptin on June 15, 2006. (Had to stop carboplatin due to an allergic reaction in August). Had my first follow-up scans in September and they were clear. I have continued Taxotere and herceptin and will have a 2nd set of follow-up petscans on November 16th. If they are clear, I will get to discontinue taxotere and maintain on Herceptin with follow-up scans every few months. My doctor says it is the Herceptin and my mom says it is all the prayers. I say it is a combination. I hope you respond well to your treatment. I remember having a pity party and sometimes still get down in the dumps, but things are looking up. Take care and I wish you well!!!!!!

Sheila · 11-01-2006, 06:14 AM

Gayle
You must remember that alot of the gloom and doom of Her2 is statistics, most before Herceptin....this board is filled with women who are Her2 Positive, many Stage IV and still enjoy life to the fullest.....I have been stage IV for 3 years. The people you will meet on this board, and who can help you through this are the TRUE NUMBERS....we are living life with Her2 + Breast Cancer. Treatments are changing every day....Herceptin was not available to me 4 years ago as Stage 1...now it would be....you must think positive!

MJo · 11-01-2006, 12:25 PM

Meltdowns are normal. Don't apologize. Someone told me not to think about my cancer or I'd have a breakdown. I told her I'd already come through a couple of breakdowns in the past year and I'm fine. Keep writing how you feel. We are hear (here) to listen. MJO

panicked911 · 11-01-2006, 02:57 PM

gayle - a year ago i was you! Her 2 ad estrogen positive and I too had my meltdown. Scared to death hence my sign on. Today i finished by year of adjuvent herceptain, am on arimidex and taking Lupron shots once a month b/c i was not menapausal. You will get thru this - it is scary as hell - but yours was caught early and today we have many mre weapons to fign BC the only a few years ago.
We are all here for you whatever you may need and remeber you are not alone.

regards

Susanne

Sherryg683 · 11-01-2006, 03:24 PM

I think meltdowns are normal and sometimes necessary. It's not good to hold in all that anxiety. I was diagnosed stage IV in December 05, it will be a year soon. I have been in remission since April. I still have frequent meltdowns, pity partites and cry fests. Face it...being stage IV sucks..are we suppose to be happy about it. It's scary, even when you are doing well and in remission, you are afraid of it coming back. I have an 8 year old daughter and I just pray for enough years to see her grown. I don't have any wise advise but just take it day by day and don't feel guilty about feeling down. You will have your up days and every day you will thank God you are alive. I'm counting on all the new medicines and treatments that are available to us now, that and prayer. There are many success stories with Stage IV, we can be one of those too. ..sherryg683

chrisy · 11-01-2006, 05:27 PM

Gayle,
Meltdown? Pity party? OH MY GOSH, send me an invite, I hate to miss those, and try to make sure I have one at least quarterly. Seriously, none of this is fair, and that is unfortunately part of the territory. You are certainly entitled - but you are not alone. Sorry you are having to deal with this.
I have to echo what others have said. You have MUCH to be hopeful about.

First, forget the statistics - I know that in every time you read "Her2 cancer" it is followed by the words "associated with poor prognosis". The stats that comment is based on are pre-herceptin and now with adjuvant herceptin available for early stagers, "prognosis" is significantly better - by at least 50%. Ignore anything more than a few years old - it's old news. The Her2 target is probably THE most active area of research and there are promising new drugs in the pipeline.
Second, being HER2+ and ER+ may sound like a bad thing - but you could also think of it as presenting a "target rich environment" as there are good treatments for shutting down these pathways.
You said in one of your earlier post that you have "no mets yet". That is great! Keep in mind, the chemo, then Herceptin and whatever else is to hopefully turn that into "no mets, period"

Just take it a day at a time, what you feel is natural and perfectly ok. When I was getting chemo I would be in tears by noon every Monday. One thing that worked for me when I got too into the "it's not fair" was to also include the good things in my life that are "not fair" - like having a wonderful hubby, great friends, all the "blessings" that not everyone gets. That always gets me smiling at least for a little while!

Hang in there,
Chris