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
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!


Mindy said...

I just wanted to say thank you for offering love and support to my mom, Cheryl. She is an amazing and strong woman and this has been tough for all of us. I am her only child and as her daughter, I just don't have the words. I am trying to stay as strong as I can for my mom and for my family....thank you for the encouragement and the hope. It was needed more then you can imagine.

Cheryl Jones said...

I had tears reading everything you had to say. I learned so much and feel encouraged and just to hear those words.....we are here for you. I am trying to think how I found you blog in the first place. I was checking so many things yesterday after getting the news I was triple neg. that I don't remember but I know it was just the Lord leading me to you and your blog. Thank you for reaching out to me. I will let you know how things go. I am praying for you too. And yes, we can beat this thing.

Gina Maisano said...

Dear Cheryl and Mindy,
I am so glad I could help.
There are lots of girls who read this blog and I am sure when they see your post, they will pop in and offer their love and support as well.
The Sisterhood is strong and we take care of each other!

Cheryl, things will get better. You are at the worst time now. This is when everything is so confusing and overwhelming and everything seems to be happening at warp speed all at the same time.

But once the dust settles and the surgery is done you will be able to get your plan in place and know exactly what you have to do and with that sense of control over things you will start to feel so much better!

I am so happy you have a loving daughter like Mindy. THAT can make all the difference in the world!

Mindy, it is ok to feel overwhelmed too- this is happening not just to your mom, but to your whole family.

Please keep us posted and let us know how you are doing.

I just know you will do GREAT.


Anonymous said...

Hi Cheryl and Mindy,
Do you mind if a family member chimes in. Cheryl appoint a family member to do all the reading weeding of information for you. Take a deep breath and One minute, one hour a day at a time . This is the most scary time of the journey.
Treatment hasn't started, words and terms you have never heard before. YIKES! Too overwhelming, too much. So fast.
I am holding your hands over cyber space Cheyl and Mindy, you can do this you are not alone there is a whole sisterhood of warriors out here. Keeping you in my prayers for
God to send his calm over you.

Gentle hugs,

Anonymous said...

I see you found our G.
She doesn't even know me but she helped me survive all my surgeries and my dd chemo.
Believe what she says~
your gonna make it.
God bless you.

Anonymous said...

I am not triple negative but I am am sending lots of prayers your way.

Anonymous said...

I saw your post on bcorg and wanted to add my prayers for Cheryl.
Cheryl, I am a three year survivor of tripleneg.

Anonymous said...

Hey girlfriends...FISTS UP!!!

I am a trip neg girl too. I had...make sure you read the HAD part carefully...I HAD trip neg cancer, stage 3C. But I kicked that cancer's butt and threw it too the curb. You will too.

In Dec of '05 I found my cancer. The next 11 months were hard, and I was afraid a lot, but I made it through and you will too.

Right now is the very worst time of your treatment. You are still in shock and overwhelmed. One of the only things I can promise you is it WILL get better. You will get your mind around this and come to understand what you need to do to get rid of your cancer. You will gain power from your sisters who have already been down this part of the road.

Any of you that need someone to talk to in person are welcome to send me an e-mail and I will get you my phone number.

I really DO understand. I stood right where you are now, quaking in my shoes, afraid that cancer would kill me. It didn't. I won. You can too.

sending big hugs
Deb C

Unknown said...

Dear Cheryl and Mindy,

Once again my heart breaks that someone else has heard the words breast cancer. I'm not a triple negative but I do understand all the emotions you are dealing with at this time.

I was 60 at the time of my diagnosis, my granddaughter was only 4 months old and the first thought I had was "Oh, God, Lilah won't know me". I had a full life as a wife, mother and doting grandmother. I saw it all ending.
Here I am 2 years out and I'm going to have a new granddaughter in December.

I know many of the women that have posted here - we traveled the same journey close together. We are ALL HERE - Standing tall. Not an easy journey but one none of us wanted or thought we could do.

One thing I hope you have gathered here is that no one that has posted will tell you treatment is a cake walk - but look around. We are all standing saying we HAD breast cancer. That we did it and so can you. We will hold your hand and walk with you in your journey; we will laugh, cry, and then celebrate with you when treatment is finished and you are standing tall. We do seem to stand tall when we finish our treatment - we have achieved something we never thought we could do.

As you start this journey, read, ask questions, talk, lean when you need to, cry when necessary and rest as needed.

Gentle hugs for you and your family,


Anonymous said...

Hey Cheryl and Mindy and Kris!

Boy did you find the right blog!

I am drawn back to the time that you are in now and it just breaks my heart. It is truley the hardest time and you are doing exactly what I did, reaching out for answers, someone to relate to, it's here babes! You are in the best company now.

We are amazing tough women! Don't know how that happened to me but it did!!! I cried, I gave up hope (once), I was sooo scared...
These women pulled me through it (kicking and hollering) and here I am, another amazing tough woman!

Gonna be around to make sure I'm here if you ask any questions I can answer. Granted, I thought all of my questions were stupid, come to find out there were plenty of girls with the same questions, just afraid to ask. Don't be afraid to ask, we've been there!

All my heart,

Anonymous said...

Thank you so much for all of your encouraging words and thoughts and prayers! I was at my very lowest ever in my life when I came to this blog. You all lifted me up! My surgery was this past Tuesday. No cancer in the lymph nodes! I have not yet met to go over the pathology report or to know where I go from here. Pretty sure 25-30 rounds of chemo is what it will be. So many questions still in my head, but just trying to get better from the surgery. I am having trouble with the sentinal node biopsy because it feels like sandpaper or a burn on my skin by my armpit?? It hurts so bad when clothes touch it? No swelling though. I did have to go to the ER the following day after surgery. Got really swollen glands and sore throat. The nurse took blood pressure AND bloodwork from the arm that my surgery was on. I am worried I now have lymphoderma (sp?) Can you get this from just a sentinel node biopsy? I thought it only happened if they removed all of them?
Keeping strong and thinking good thoughts,

Gina Maisano said...

Yay! Cheryl so GOOD to hear from you!!! GREAT NEWS about your nodes!

You will be feeling all sorts of strange sensations in your arm. It will feel numb in some spots, tingly in others, it is from the nerves being severed. But they will grow back and heal.

YES, you CAN get Lymphedema (LE) from an SNB. So you really MUST INSIST that no blood draws be taken from that arm again. You would be surprised at how many in the medical profession either don't know about LE or do not think it is of any concern. So YOU have to be your own advocate. Protect that arm. I have to protect BOTH arms now so when I had surgery last week they gave me my IV in my foot!

When you see your surgeon for follow up have him take a look at it. But from what you are describing it sounds like the usual post op pain from that procedure. Make sure you do your arm exercises.

Remember- one step at a time. You just had your surgery. Now you need to wait for the full path report and discuss the options you have to choose from. Don't get ahead of yourself!

Thank you for checking in! I have been thinking about you.


Anonymous said...

Keep up the good work! I still have numbness in my armpit (2 years out). Doesn't bother me a bit.
Be the protector of that arm. We really don't know what it takes to absolutely set off lymphodemia but we do know that there is no sense in risking it! No needles, no blood pressure cuffs, and no lifting a '69 chevy' over your head!


Anonymous said...

I am thrilled to find this blog. I will begin chemo next week for stage I invasive triple negative. I got caught in the frightening statistics and freaked out. It is hard to find other women who are out there with this diagnosis. So good to hear that it is beatable.