Roll Call

[Lyn]

Hi out there, on some posts there are up to 280 or more hits, who are you, the responses are few and far between. we would like to get to know you, the beauty of this forum is that you don't even have to say who you are if you don't want to, and I can only imagine there are scared ladies and men for that matter, wanting answers to their questions.

Welome, Love & Big Hugs Lyn

[al from canada]

Al, husband to Linda, Dx Oct 31 / 03, Mets dx april / 04.(liver, bones and marrow).
I would like to encourage more BC families to use this board: it is up-to-date, compassonate and probably most important, cutting edge! I have viewed many other boards and this one has just the right balance between research and compassion and also has an incredibly dedicated staff of volunteers keeping it on=track and moving. I would encourage anyone with HER2++ BC to stop lurking and get involved; stop feeling alone.

[Julie]

Hi, I'm Julie. I'm a psychologist. I started reading here over a year ago when I was working with kids whose mom had BC. I'm no longer working with the kids but I bonded to you ladies, and I check in every other day or so to see how you're all doing.
You're a marvelous group, and have my respect, admiration - and gratitude for what you've taught me.

:)

Julie

[JoJo]

Hey Lyn, I was wondering about the same thing! You just beat me to it. :-)

I am an active participant here on the boards, although I must admit that I have yet to register! Me, lazy dog! :-)

[Lyn]

Hi there, and thanks for sharing but we still have a lot of shy people out there and at least we know the posts are getting read and hopefully helpful and encouraging.


Love & Big Hugs Lyn

[Cara]

Hello

Keep feeling I don't belong here - but I guess I do.

Found lump left axillary 8 Feb 04 - confirmed malignant with needle biopsy Feb. 10.
Unable to establish anything in either breast with ultrasound.

MRI confirmed malignant underarm nodes and found two other suspected nodes behind sternum but still nothing in breasts.

26 February - surgery to remove underarm nodes - 4 of 11 malignant (? breast primary).

Long wait for detailed pathology report.

Just as I was about to start Epirubicin/Taxotere found out I was HER 2 positive 100%
Oncologist managed to get me on Herceptin though I wasn't a stage 4.
But I guess I must be at least a stage 3 despite the absence of a primary tumour.
The Epirubicin was dropped and I started 3 weekly Taxotere for 6 sessions combined with weekly Herceptin.

Finished Taxotere mid-July and continued Herceptin till end of July.
Had a triple dose then and was allowed THREE whole weeks off!!

Came back end of August for a scheduled PET scan (Herceptin cancelled for that week)
Pet scan confirmed what earlier cat scan had suggested - nodes behind sternum had disappeared!!
Woohoo - I was, what I believe, is referred to as "NED" here!

However, there was the Radiotherapy to come. Started that almost immediately afterwards.
Had radiation to 4 "fields" for 6 weeks in total.
They decided to suspend Herceptin while I was having Rads as they couldn't be sure that it wouldn't increase my risk of heart damage.

(No research has been published on the administering of Rads and Herceptin together apparently)

I'm still not convinced that suspending the Herceptin was necessary and I was very nervous about stopping it for so long, in all about 8 weeks.
I do concede though, given that the Rads were on the left side and would be directed at the chest wall the heart and lungs were likely to be affected to some degree.

Anyway finished radio therapy at the beginning of October 04 and have been on 3 weekly Herceptin since.

At present it has been prescribed until the end of March but I am hoping to continue even after that and am putting contingency plans in place in case they decide I'm not a deserving enough candidate after that.

Have just discovered today that the nodes that were seen on my Thyroid are benign and that I "only" have thyroiditis.

So all in all I am cautiously optimistic.

I live in France, but am Irish.
I am 47 (46 when diagnosed), am married and have three children.

As I say I am still having trouble believing I belong on a board like this despite how great it is!

[*_Penny_*]

Hi! I'm Penny. I was 11 years old when my mom was first dx with BC. She was 40. She had a mastectomy and then chemo. She was actually in a clinical trial at a hospital in PA. She did great. Five years later she found a nodule in her armpit on the same side. Biopsy showed it was malignant. She then had radiation. For the next 14 years she did wonderful. She was active, always ate good. Especially if she read that something was good for cancer, she made an effort to get that into her diet. Then in Sept. of 1999, her onc. told her he thought she was cured and he realeased her as his patient. He said it had been so long since the last reoccurance he thought she beat it. Well, then she started to get hoarse and short of breath. She saw an allergist who thought she had allergy asthma. When the allergist saw it had been 5 years since her last chest X-ray she ordered one. When the X-ray came back it showed "something". CAT scan was done. Then a biopsy of lung tissue. The cancer was back. There was also 2 spots on her liver. It was awful. I was so much older and understood alot more about cancer then when she first got it all those years ago. So she started again with the chemo. Herceptin and Taxol. She did well. That all began in 2000 and she's been on and off chemo ever since. She never went into complete remission. Her onc. said she was in partial remission. But now she's getting sick alot. They say the chemo is just making her more sick. So I don't know if this is really it or not. We have Hospice coming in and they have been wonderful. I started to come to the sight for answers. I wanted to try and understand the disease more and it made me feel like I wasn't just sitting around letting this happen. I feel so helpless. And by coming to this sight it has somehow helped me. Reading all your courageous stories, it just amazes me. I admire all of you. I only pray that someday (and I KNOW they will) they will find a cure for this terrible disease. I hope it's not too far off. Too many people have already suffered so much.
I guess we have to concentrate on today. My mom will be 64 on Saturday and my 2 little girls and I are going to get her a cake and ice cream and have a sleepover. I know she will enjoy that.
Thank you so much for all your advice.
Love, Penny

[Lolly]

I've been a regular here since 2001, after finishing chemo for first recurrence and continuing on maintenance Herceptin. Since then I've had another recurrence last spring, more chemo along with the Herceptin and now maintenance Herceptin again indefinitely. I'm also in the Her2 vaccine/Herceptin clinical trial at University of Washingto in Seattle, which I found out about through this site. I think that the support and information here is incredibly important even to early stage survivors, and family members such as Al and Penny, and everyone else who has an interest in the changing face of cancer therapy, as we are truly on the cutting edge here!
Welcome to all.

Love, Lolly

[Lyn]

Hi Lolly, as usual you have the right word. INTEREST, that is right you don't need to be a victim to participate, we encourage all the knowledge possible to be listed here so we can all help one another. My original knowledge of Herceptin came from another site from a lady who was in Scotland, I had not heard of it but she suggested I find out if I was compatible for the drug, and like an act of God I turned out to be HER3 best possible candidate and I have been here ever sense milking all the knowledge to stay alive and passing it on to my Onc who in turn uses some of the combination for his patient who aren't even Her2 but he just has to leave that out. So if any of the readers out there have any input please join us.

Love & Hugs Lyn

[Rozebud]

I like to read a lot of the posts, but often don't have anything to contribute. Many are mets related, and I just don't have any experience there yet. Plus sometimes I don't have the time to type out a response.

[Meg]

Hi,
I was diagnosed with Stage I invasive ductal Er/Pr+ HER 2+ no nodes February 2004. I began chemo (Carboplatin/Taxotere/Herceptin) in March and finished in July. I had 6 weeks of rads and am still getting Herceptin every three weeks until March '05. I am 42, married with two children. I live in a very small town in Missouri and there are no support groups close to my home. I love this board and find it very helpful. I come here when my recurrence worries get too big. I gather strength from your courage. I don't post often and will try to participate more in the future.
Blessings to each of you.

[Lyn]

Hi Meg and thanks for posting, as you can see we have a lot of viewers out there and just one little bit of input can open up a whole new line of treatment for us to investigate.

Love & Hugs Lyn