Saturday, August 25, 2007

For Cheryl and the newly Diagnosed Triplenegs

I just received a comment on the "Friends" post from a woman who has been diagnosed with tripleneg breast cancer and is having surgery on the 28th.

My heart is breaking. I go in for surgery on August 28th. I have triple negative invasive ductal breast cancer. I have not read one good thing about the prognosis of it. I am a mother, wife, grandma and I have wonderful friends, but none that can truly understand my feelings. I am not sleeping at all. I am sitting here wishing I knew someone to call and to be my friend. I am just 51 years old. I love my family so much. I am trying to cling to hope. Please if anyone wants to give me their phone number, I really really need to talk. I don't have a blog but my daughter does. You can see my beautiful grandchildren. She posted a post about me about a week ago. My my email is cherlilly12@yahoo.com
I pray someone sees this today (Saturday)


Cheryl, we are all with you and you are not alone.

I want to tell you a few things about tripleneg.

First, I am a SIX YEAR survivor of a highly aggressive tripleneg cancer. It is gone. It CAN be beaten.

Please don't be confused about my stories of the chemo and surgeries I am undergoing now because that is for a NEW cancer that is NOT tripleneg but, rather, and entirely different type of cancer that is lobular and ER/PR POSITIVE.

Tripleneg has a bad rap. Yes, it is more aggressive. And no, there is no "after-drug" for it like Tamoxifen or Arimidex. And it seems every time we turn on the news we hear about a brand new drug that is for everyone else BUT triplenegs.

Let not your heart be troubled. There are breakthroughs happening right now. New drug combos are being tested and used and they are working wonders on ER/PR negative cancers. And the even better news is, no matter what kind of chemo you get, CHEMO WORKS BETTER ON TRIPLENEG THAN ON ER/PR POSITIVE CANCER. What's more, if you are disease free for more than four years your chances of your cancer ever returning are almost zero.

I hate the term TRIPLENEG. Because it is misleading.

Here is what it means:
You are negative for estrogen and progesterone receptors. All that means is that your cancer was not fueled by estrogen or progesterone.

You are also negative for the Her2Nue oncogene. That means that your body doesn't over-express this gene.

So why is it considered a bad thing? That is just it! It ISN'T a bad thing!!

The first thing is that, for now, there are no drugs to take after treatment like ER/PR Positive women can take. The drugs they take block estrogen. Since an ER/PR Negative tumor is impervious to estrogen and its effects, you don't need to block it.

The second thing is that being Her2 POSITIVE is a BAD THING!
You do not want to be over-expressing a gene that makes cancer grow! Every tripleneg should be HAPPY to be NEGATIVE for Her2.

If you were Her2 positive, you would take Herceptin, the wonder drug that fights the Her2 gene. But you do not need it.

For some reason, docs have lumped all three together simply because there are no drugs for triplenegs to take. It really doesn't make much sense when you think about it.

There is HOPE for triplenegs.
There are ongoing studies for triplenegs.
There are new chemo combinations that are working wonders on triplenegs.
And you can BEAT tripleneg.

Carboplatin, Cisplatin, Avastin, Xeloda, Abraxane are just a few of the drugs being used to kill estrogen/progesterone negative cancer cells.

And in the future? There very well might be a drug to take post treatment. The newest Her2 drug, Tykerb, has been shown to kill off EGFR cells that triplenegs also have. Studies are being done right now.

So please, don't get overwhelmed by your diagnosis.

Take this one step at a time, one moment at a time. Now you must focus on your upcoming surgery. After your surgery, you will be rid of the tumor. Then you have to heal.

Your next step, depending on your pathology report, will be some sort of chemo. But you are not there yet. So don't get ahead of yourself. But if you must, remember the GOOD NEWS. Chemo will kill off any stray cells left over. And chemo works BETTER and more COMPLETELY on Tripleneg cancers than any others.

Cheryl, you make it through this. It doesn't seem like it now, but you will. I promise!

Good luck to you my friend!

Tuesday, August 7, 2007

Friends

Something rather magical happened this weekend. There is a forum on breast cancer org that was started almost a year ago to help women who were getting bad news piled on more bad news. It is called Time to Circle the Wagons Girls. You may have heard me refer to this blog as a Wagon Circle Outpost.

When one beloved member posted that her cancer had come back "worse than ever" and that the oncologist gave her only two months there was fear on the site. We had dealt with many other sisters who had received a mets diagnosis, but not like this. After this woman posted, three others also received horrible news. The women wanted to talk about how scared they were for their friends and for themselves, because we all know we are just an MRI away from that same diagnosis. But they also wanted to find a way to encompass and shelter these sisters and help them through the storm they were in.

It became a wonderful, loving place. We had so many hits that BCO gave us our own forum. And the circle grew and grew. Finally mets girls felt they could post about themselves and know they wouldn't be scaring anyone - why? Because we were created for them. Girls who had scary tests started to come. Wives whose husbands were mistreating them in the worst way because they had cancer could come and find shelter. And the best part was, it was also fun. There is laughter that emanates from those covered wagons. It is a cyber world that seems so real you could almost smell the cowboy coffee cooking in the morning.

This past weekend the cyber world became real. One of the Circle Girls opened her house up for a "Real Wagon Gathering." Girls came from as far as Alaska to this upstate New York slice of heaven. Faces and voices could be matched with the words we had shared over the past year, through the hardest of times and the most joyous of times.

I could not attend because of my treatment schedule. This saddened me more than I can express. On Saturday night my phone rang. I picked it up and heard laughter and shouting and music. The Circle Girls were calling me. One after one they got on the phone and we said hello and talked about just how wonderful this little internet thread had become. And then I heard singing. It got louder. I was told that the cell phone was being held up and I was part of the circle they created around the fire. They asked me to sing along with them and I could feel myself dancing around the fire with my sisters, a real part of this amazing group of women. It will always be a moment in time I will never forget.

We have been asked to deal with a lot when we are diagnosed with cancer. And those first few days and weeks can be a very dark and lonely place. But if you are very lucky, a sister will reach out to you. Someone who has been through what you are about to face will hug you and tell you that you may be in the worst place in your life, but you are with the best of people you will ever know.

Friends come and go. Sisters don't. I have had vapid friendships with people since my diagnosis who just don't get it. The kind of people who complain to you about the way their colorist did their hair when you are standing there in a wig because you are bald. The kind of people who diminish what you are enduring by making the most inane problems in their lives life or death when you are literally fighting for your life with chemicals and surgeries. These "friends" come and go. And it is ok. Because we have our sisters. We have women who know with just a look what we are thinking. Who know how scared we are. Who understand what is important. Women who are part of our hearts and always will be.

When you are a member of an internet support group words are written and you believe them, but not until something happens do you really see what your true friends are made of. The cancer survivors who share this blog with me have become a very important part of my life. It is because of what we have experienced and the way we know instinctively how to reach out to one another. I have found that the bond I have made with other women who have faced down the beast is as deep as any blood relation, in fact, it is deeper. This weekend, even though it was only over the phone, I felt the love of the women who have become my family over wires and fiber optics many a late night and days when I should be working and not checking who is online.

No friendship with a "civilian" could ever match what breast cancer survivors feel between each other.

The woman who had her cancer come back worse than ever with only two months to live? She is NED now. That means No Evidence of Disease - which means she is doing fine. Of course, if you are a survivor you knew that already.

From two months to live to no evidence of disease.
I told you.
Something magical is happening.