HER2 positive | Trixieland

Archive for the tag “HER2 positive”

15 Oct 2015

Bad news, confusion, and a giant WTF

I had nearly given up on getting my pathology report yesterday. I’d started second-guessing my memory about what Dr. Superman had told me. (“He said Monday or Tuesday…maybe he meant NEXT week…”) I’d called my surgeon’s office in the morning to make my post-op follow-up appointment that morning and asked the receptionist about my report. She said it wasn’t in yet and she’d call them and find out what was going on. Then I heard nothing all day. So, I was pleasantly surprised when Supe called me around 5:30. He took a minute to apologize for the delay. He said something about how it was taking longer to process or whatever blah blah blah. Get to the good part, I thought. Go ahead and tell me “Congratulations, you are cancer-free.” bad-news-bears1

Only that’s not what he said. One of the lymph nodes he removed had cancer in it. Still. After SIX ROUNDS of shitty, miserable, fucktatious fuckwad chemo. The other node had fibrous shit in it which he says indicates it probably did have cancer, but the chemo got it.

Then the other thing he said was that in the junk he took out of my boob there was DCIS which is Ductal Carcinoma In Situ, also known as Stage 0 cancer. This stuff I guess can’t kill you unless it escapes your duct and becomes invasive (Turdy was Invasive Ductal Carcinoma). From what I understand it’s a sleeper cell. There is debate in the medical world over whether it is being overtreated currently. Right now protocol usually is to cut it out and maybe radiate it. Chemo doesn’t really work because it targets fast-growing cells. Sooooo this is another cancer that had never shown up before. Not on mammogram, not on ultrasound, nor MRI nor PET scan. It’s an October surprise.

So what now? What do I do now. Here’s were Dr. Superman gets infuriating. (Insert a bunch of words about how he’s nice and a skilled surgeon and I respect him, etc etc). Supe thinks in terms of stats. Overall stats. So when I was wondering whether to have a mastectomy or a lumpectomy, he didn’t offer an opinion, just told me that after ten years there was no difference in survival rates. So it didn’t matter which I chose. And he told me the same thing yesterday. That the chance of recurrence of the cancer statistically, over the long term will be the same whether I just go ahead with the radiation I was going to have anyway or if I have more surgery. The difference will be how I feel about it.

“Well, if I just have the radiation as planned, how will we know it worked?”

“You’ll know in ten years when the cancer hasn’t come back.”

Okaaaaayyyyy. That…doesn’t really work for me.

So here’s what I know from this conversation:

The chemo didn’t work completely.
I am not “cancer-free”
I can’t participate in the radiation research study I signed up for.

Here’s what I don’t know:

What the fuck?!
If there’s any more cancery shit in the lymph nodes that are still in my body.
How much boob Supe took out.
If there was anything left of Turdy in my boob.
If the DCIS was in the scoop he took out, is there any more in my boob that they didn’t find before?
What “more surgery” means. Bigger scoop? Mastectomy?
Why no one will give me a fucking straight answer.

Reading back about HER2 + cancer I noticed something that I hadn’t seen the first time.

“According to The New England Journal of Medicine (NEJM), up to 70 percent of patients with HER2-positive breast cancer respond to treatment. However, total remission for the condition occurs in around 7 to 8 percent of patients.”

Maybe I don’t understand it correctly, but it appears that only 7 or 8 percent of HER2+ breast cancer goes into remission. Well, that can’t be true, can it? I mean, was there only ever a small chance that I would, at some point, be cancer-free? Do I not properly understand the term “remission?”

Why did I think I’d get to hear those “cancer free” words? Why was I so convinced I’d be popping champagne corks instead of shaking my head and wondering what the fuck has gone so wrong?

Dr Supe told me he’s on call this weekend and if I have questions to call his service and tell them it’s an emergency. Which is very kind. But I…don’t know that I can ever get a straight-up honest answer out of him. Unless it’s something that I can’t use. When he says it’s statistically identical for me to have more surgery or just the radiation…what does that mean for me as an individual? That I’m fucked either way? Or I’m okay either way? And just what ARE the statistics? He didn’t mention any numbers…and I could spend all day and all of next week looking for that stat and I won’t be able to find it.

I don’t know where I stand. I have an appointment with Buffy the Cancer Slayer on Monday morning and hopefully she will be straight with me. Also, I need to get my hands on that pathology report and see for myself just what is what.

I’m not a child. I’m not fragile or addle-brained. I don’t need to be protected. I’m not asking for nuclear launch codes; I just want to know the truth about what the fuck is in my body, how dangerous it is, and how to make myself as safe as possible.

Is that asking so much?

Chemotherapy 1 of 6 – The Toxic Bride

Yeah, I wish!

Well, I did it! Got through my very first chemo session! Honestly, it was a breeze. The first one was long (5 hours), since I had to do long doses of my targeted therapy (Perjeta and Herceptin) for the HER2+ flavor of my cancer. But the next five rounds will only be 3 hours each.

Basically, I sat in a recliner and slept, played games, snacked, and read a little. It was like flying business class to NYC except I ended up where I started.

Here’s how it went down:

First, I met with Dr. Cap and he was disappointed that we didn’t yet have the pathology report for the MRI-guided biopsy I had the day before. He called the lab and they weren’t ready. Then he got on the phone and conferred with my surgeon (Who needs a new nickname. He’s so much more than “Boobcutter”). They agree that it was okay to go ahead and start treatment now. What’s in my left boob didn’t set off the PET scan, so it could be a pre-cancerous duct or something that we’d just keep an eye on. There’s a tiny clip in there now, so they’ll know where to look in the future. (This brings my shrapnel count to three: one in Turdy the main tumor in my right boob, one in Son of Turdy the ginormous malignant lymph node in my right armpit, and now this left boob business.)

Anyway, Dr. Cap isn’t happy with my iron levels and he wants me to take iron supplements.

“Yeah, but then I might not poop,” I say.
“Well, the diarrhea from the chemo will probably balance that out.” He grins.

Gunny and I wore pins!

Cleared for take-off I choose the best chair in the infusion suite. Off in the corner, next to the windows, across from the blanket warmer. One of the chemo nurses “accessed my port” to start the IV. This was by far the most painful bit of the entire cancer carnival so far. I think I mentioned that I have an extra-thick collarbone and my surgeon had to go pretty deep to get the central line connected. Anyway, the needle she started with was too short, and she thought she could get it to connect better if she pushed down on my chest. It felt like being stomped on by a horse. I only had that surgery ten days ago, lady! Easy! So she gets a longer needle and it worked fine and I chilled out.

She waited patiently while I took my round 1 selfie.

And then the party began. First bag was a cocktail of anti-nausea medication and steroids. Then came the Benadryl. Luckily my husband was still there at that point because a nurse came around to set up appointments for the Neulasta shot (which stimulates bone marrow to produce white blood cells), a blood draw, and Round 2. I was pretty loopy by then and Gunny handled the appointment-setting. Then he went off to watch the new Avengers movie for the second time so I could nap.

My chemo nurse swapped the Benadryl bag for an hour’s worth of Perjeta. This is the HER2+ killer that still has new-car smell. It’s sort of companion treatment to Herceptin and makes it work harder and more effectively.

I listened to the Great Gatsby soundtrack on my iPod and slept for about an hour.

When I woke up it was time for 90 minutes of Herceptin. This is the shit that is going to save my life. If you want an entertaining look at the discovery of this wonderdrug, watch Living Proof. It stars Harry Connick Jr as Dr. Dennis Slamon who is a hero much more impressive than Iron Man or even my beloved Thor. It has a semi-dippy “Let’s put on lipstick before our cancer drug trial” montage (It IS a Lifetime movie) but it’s otherwise great. Inspiring.

I spent most of this time on my phone keeping up with what I can only describe as the most monumentally awesome thing a person could have happen to them. One of my friends, Kari Toyama (who is just a stellar human being as well as being cool as hell) spearheaded a campaign to have friends post selfies and signs with the hashtag #lovetrixiefuckcancer. So all day I was inundated with more love and support and laughter than I could ever have imagined. Take a look:

I have some un-fun remnants of working in the video game industry, but THIS, my god. THESE PEOPLE are the gift of those years. Kari said to me “PSH it was nothing.” I’m sure you’ll agree that nothing could be further from the truth. It was EVERYTHING.

A glimpse at my Twitter feed yesterday.

Go ahead and blow your nose and wipe those tears. I’ll wait.

After my targeted HER2 antibody drugs, it was time for the heavy duty shit. The actual chemotherapy. One hour each of Taxotere and Carboplatin. I ate half a peanut butter sandwich and drank water. Oh, and some Swedish Fish. My husband returned from the movies and I started reading a book my friend Kim recommended: A Kind Worth Killing.

This precious thing is Allie the Feel-Better Fairy. Thanks to my dear friend Nori. ❤

And then, it was over. I got home in time to meet my baby at the bus stop. I was kinda worn out, and lounged in bed and read. Not much appetite for dinner, but I did my best. I had an ice cream sandwich for dessert.

So here’s a couple things I learned about chemo that I didn’t know before:

1. You are allowed to pee! They can unplug your IV from the wall and you can run on battery power and shuffle your ass to the potty hauling your drugs on a pole. Comes in handy when they’re filling you full of liquids.

2. For a couple days post chemo, you are TOXIC. All of your bodily fluids contain chemo drugs and you don’t want anyone to get any on them. What does this mean? If I have night sweat, I gotta sleep alone. After using the toilet I have to shut the lid and flush twice. TWICE! I feel like I’m murdering the Earth! The most surprising though? NO SEX. Kinda wish they’d warned me about that one the night before so I could store up. But yeah, the chemo nurse said no sex at all for a few days and no unprotected sex for about 8 days. WHO KNEW? Talk about unfuckable!

So how is my toxic ass doing today? Not bad. I felt a little bit queasy when I woke up, so I got up, popped a Zofran and went back to bed. My chemo nurse (and also the amazing Ann who blogs at Breast Cancer? But Doctor I hate Pink and wrote this super helpful Top Four Tips for Getting Through Chemo post) both said to take meds at the first twinge of queaze, so I did. Thanks, ladies!

I went to the hospital this morning for my Neulasta shot. It can cause bone pain, so they have you take Claritin (yes,

I told her she was like our beloved Seahawks quarterback Russell Wilson when he does his weekly visits to Children’s Hospital.

the OTC allergy drug!) beforehand. My daughter came with us to see the place Mommy goes to get her medicine and everyone smiled to see her. She says it’s not scary and she wants to go back. We’ll see.

Next up is a blood draw on May 15 to make sure my white counts are okay. It was really sad yesterday to see a woman come in for her chemo all sassy and joking around only to be sent home for low white counts.

Then, Round 2 happens May 26.

In the meantime, I’m hanging in there. I’m still riding the steriod high that kinda props you up the first couple of days, and have heard that days 4-7 are the worst. I will keep you updated, and I’m not going to be polite. For now, I await the coin flip: which will come first, puking or diarrhea, or BOTH?

Thank you for all the love and support!

Posted by trixie360 in Cancer and tagged benadryl, breast cancer, carboplatin, chemotherapy, ER+/PR-/HER2+, first chemo treatment, friends, HER2 positive, Herceptin, love, Neulasta, Perjeta, stage 2 breast cancer, steroids, support, Taxotere

30 Mar 2015

11 Comments

The Good, the Bad, and the Not-so-nice

The Good

Great news! I do not carry the breast cancer gene! Dr. Boobcutter called me himself to tell me. While it’s always good to not have a gene that’s trying to kill you, let me tell you why this is extra-awesome. It means my family can rest easy as well. My mother and aunts and daughters of course, but also my son and brother and any future grandchildren or nieces and nephews. The dudes, too? you ask. Yes. Men who carry BRCA1 or BRCA2 are more likely to get prostate cancer, and can pass the bad gene to their offspring. You can read more about the gene here.

Let’s pause a moment to celebrate this turn of events.

The Bad

I had a whole day to share the good BRCA news with my family. And then the next day I notice that I have a new message in the online charting system for the hospital. It’s a message from my oncologist Dr. Cappucino and it says that my cancer is HER2 positive. The thing we did not want.

NOTE: I’ve noticed that in this odd side trip in my life that as much as I try to fake myself out and prepare for bad stuff, I’m not very good at it. I told myself (for what–three weeks now?) that the HER2 would probably come up positive. But I guess I didn’t really believe it, and it hit me pretty hard. This was my low point–worse than when Dr. Movie Star told me it was cancer.

Dr. Cappucino’s note went on to say stuff about chemotherapy and stuff. But first, a reminder on what the hell HER2 is.

Does anyone else find it funny that the breast cancer cell totally looks like a boob? The tweet length dealio with this antibody is “HER2 makes cancer grow like a motherfucker. Kill it with chemo.” If you’re a science nerd like I am, read this article about how the National Cancer Institute identified the role the antibody plays and how to stop it. This treatment is cutting edge–one of the drugs was only approved in 2014. This is iPhone 7 shit.

Anyway, Cappucino is recommending Herceptin and Perjeta as part of my chemotherapy. (Don’t read the side effects, Christa, don’t you… ACK! My heart!) He also mentioned that there’s a clinical trial at my hospital that might be a good option for me. He said to give him a call if I have any questions.

I haven’t called him. I haven’t seen a doctor in two weeks. I’m still waiting to make the breast MRI appointment because I still haven’t gotten my period. Which is several days late. I know I’m not knocked up, so either I am more stressed than I have ever been before (a distinct possibility) or my body has declared “fuck you” and has thrown itself into sudden menopause. It’s REALLY starting to piss me off.

Beyond waiting, the thing that’s irritating me is the possibility of getting chemo/hormone therapy before surgery. It’s not uncommon, it seems to be very effective, and yet I feel like I don’t want to do it that way. For one thing, Turdy is fucking annoying me. He’s shape-shifting inside my tit, and as he is both HER2 positive AND according to his Ki-67 levels 50% of his shitty little self is in mitosis, he’s probably GROWING. You can almost see him from the outside now, in profile. He’s lumpier than before. He might be flipping me off. I want him OUT. I am starting to feel empathy for the crew of the Nostromo.

The Not-So-Nice

A friend asked me this weekend, how did I get this? Was it maybe the 30 years of drinking Diet Coke? Someone else sent me an email about how refined sugar causes cancer in rats. Did I eat too many sweets and give myself cancer? Well, I don’t know. No one knows. Do people need to make this my fault in order to feel safe themselves? Is chaos so frightening that blame must be placed on me? I also smoked cigarettes sporadically between kids. I know that’ll help give you lung cancer, but does it have a link to breast cancer? As far as what I did to summon breast cancer (according to the risk factors) I know I did some things right:

Had my first child before age 30
Breastfed my babies (2 of them for over a year)
Didn’t take oral contraceptives (they make me crazy)

Does all that outweigh the things I did wrong? Obviously not. But hey, is it necessary to know why I got cancer? Must we assign blame? Mightn’t it be like an unlucky roll of the dice or being struck by lightening? Do I need to be judged for this illness, or can we just move forward and fight this fucker?

Posted by trixie360 in Cancer and tagged blame, BRCA, breast cancer, breast cancer gene, cancer, don't judge me, genetic testing, HER2 positive, Herceptin, Perjeta, risk factors, what causes cancer

25 Mar 2015

8 Comments

Tests and the waiting game

Okay, Tom Petty, you know your stuff. The waiting is the hardest part…at least so far.

The initial diagnosis happened so fast. It was Boom! Lump. Boom! Mammogram and ultrasound. Boom! Biopsy. Boom Boom Hiss! It’s cancer, bitches.

Darth Turdy

Just two days after learning I had breast cancer I met with my breast surgeon, Dr. Boobcutter. A week after that I met with my oncologist, Dr. Cappucino. In between and since has been a whole lot of waiting.

What am I waiting for?

Genetic testing to see if I carry the breast cancer gene BRCA. Why is this a big deal? Because if I’ve got it, there’s a 30% chance that the cancer will recur. It’s in this case that we start discussing a double mastectomy. Upside: Angelina Jolie reconstruction tits? Downside: All of my relatives and descendants are in jeopardy. My blood was drawn for this on March 12. Dr. Boobcutter said it would be 7 to 10 days.
Breast MRI. This will give us a clue as to if Turdy has sent scouts into my lymph nodes. Why is this a big deal? Because if my nodes are clean we can probably just evict Turdy and do a round of radiation. I.e. no chemo. What’s the holdup? My goddamn menstrual cycle. [Editor Me: Yuck, are we really doing this? Writer Me: Are we going for pretty or honest? Editor Me: *sigh* Writer Me: Okay, then.] Because boobs swell and change over the course of the month, they need to pinpoint the MRI between day 7 and day 13 of the cycle. Which means that I’m supposed to call the scheduler when I get my period. So they (Boobcutter, Cappucino, and the MRI peeps) are all waiting for that to happen. And you know how being stressed out about it helps that situation. This may be even more stressful than a teenage broken condom scenario.
HER2 Antibodies. The initial test (IDC or immunohistochemistry) came back 2+ or “equivocal,” requiring further testing. The second test (I assume FISH or Fluorescence in-situ Hybridization) was also inconclusive. So apparently they are now running a third test. Why is it a big deal? Because if my cancer has HER2 antibodies it is very aggressive. And I may get chemo prior to surgery (this is called neoadjuvant therapy). If Turdy the Tumor is HER2 negative I may not need chemo at all! So HER2- = maybe chemo HER2+ = Chemo City. Basically, this is a test I want to flunk. HER2-positive cancers are much more likely to recur and the five year survival rate drops significantly. Do not want.

So, really, I’m just sitting around waiting to take tests and to get test results. Except when I went to see It Follows with Gunny last Friday. And spent most of the film checking for messages from Dr. Cappucino’s office because at that point the second HER2 test was already a week late. Halfway through the film I saw a missed call and went into the hall to return it and found out that it would be another week for that pesky HER2 shit. That was scarier than the movie.

I have a new book coming out next week and it’s really hard to give a shit. I want to DO something. I mean besides bingewatch Empire and Bloodline and The Jinx. I want this fucker out of my body.

Posted by trixie360 in Cancer and tagged breast cancer, breast cancer diagnosis, cancer pathology, HER2 negative, HER2 positive, HER2 testing, tom petty, turdy the tumor, waiting

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Archive for the tag “HER2 positive”

Bad news, confusion, and a giant WTF

Chemotherapy 1 of 6 – The Toxic Bride