Small cells, big changes

Remember back in January this year when I wrote about coming up on my 1 year mark, I was having a particularly challenging morning already and then I logged into work and the first URL I saw in the folder list was "small-cells-big-changes?" I felt like my mind was going to burst and that the Universe was trying to tell me something.

Well ... it's been 4 months since then. And do you know what? That "small-cells-big-changes" webpage hasn't even come up one time in these past 4 months, until recently. It actually came through as an overall question that just happened to be directed to me, because I have an existing relationship with the page owner, and her support team couldn't solve her issue. I had to scroll down in her email to find the issue, and low and behold - there it was. That same URL again - by chance. Absolutely no direct reason for it to be in my mailbox, I wasn't assigned to work on the page, but there it was again by happenstance. At the same time medically, me and my doctors were working on getting my latest pathology from my liver biopsy. We had part of it, but not all of it, and that last bit was really important on multiple levels.

So here's what happened. 

I had the liver biopsy with the intention of exploiting the FGFR2 amplification that showed up in my genomic sequencing in early 2016, and then using that mutation to join the NCI MATCH trial. While we waited for the biopsy and results, etc. I was off treatment. It was a calculated risk - but I had high hopes for the next treatment that was to come from this trial. 

We got the results from NCI about 3 weeks later after the biopsy. My mom was here. We went to go watch Beauty and the Beast since - I live in a house full of boys - I hadn't seen it yet. (I loved it btw.) I most likely need to watch the movie again because I stepped out multiple times to take medical phone calls. The results were in. The NCI report showed the FGFR2 amplification was gone and there are no other actionable mutations for the MATCH trial. I'm not a candidate.

What? 

Also, the pathology results from the biopsy showed negative for estrogen and progesterone. 

Wait ... negative??

We don't have the Her2 status yet, but we're checking back with the pathologist to see if they ran it. If not, we'll request they run it. 

1,000,000 questions ran through my head as I listened to the results while at the same time tears welled up in my eyes. Negative. It's only been 12 months. Is it common for that to happen after 12 months? I'm not a candidate for the trial. I have to pick a new treatment AGAIN. I've been off treatment for 3 months now while I was waiting for this trial. I have to pick a new treatment. I have to get online. Shit - I have to walk back toward the exit doors because my phone just cut out and I'm losing reception - she can't hear me. 

Argh...

SO - long story short, I was shocked, I now needed to pick a new treatment regiment again, we were still waiting on one piece of pathology to get a full picture of what the cancer type was ... meanwhile my tumor markers are doubling and tripling based on my most recent lab reports. My local oncologist was hounding me to come in, concerned about my marker levels, and wanted me to make a choice. She wasn't receiving updates from my oncologist in San Antonio and she was frustrated she was left out of the loop.

All in all - a much longer story encompasses all this - but honestly - it was a lot to live through and process - the up and down and indecision and coming to terms with everything that I have to do next - it's a lot so I'll spare you all of the intensity - because it was seriously intense. The short of it is this - I go in tomorrow morning for a port placement (essentially a device that they implant under your skin with a catheter that runs down one of your major veins so they don't have to set an IV each time you need treatment) and on Monday I start 24 weeks of IV chemo plus two targeted therapy drugs, also administered via IV.

Yep.

The small cells indeed had big changes. The original cancer cells from 2010 and the metastatic ones found in 2016 were hormone positive, Her2 negative. This means they essentially fed off of the female hormones estrogen and progesterone and were negative for an over abundance of a protein receptor on the cell surface called "Her2." A receptor is like a lock and things in your blood that fit into them are like keys. When a cell has more receptors than it's supposed to, it picks up more keys than it's supposed to, and it sends more signals than it's supposed to, and things get out of control (like cell division). So the original tumor cells used hormones as their keys to growth. My most recent liver biopsy however revealed that the cells taken from my liver were no longer this same pathology. They were actually negative for hormone receptiveness and positive for Her2. This is a big change.

Why is it big? Well, there are multiple reasons but the most important reason is this - there are really, really good medications out on the market that target the Her2 amplification. Many women who've I've talked to as well as the numerous studies I've read, all confirm that there is a very good chance at a long-term, durable, stable or better response. And when I say "long term" here I mean like multiple years. There are many women who end up with "no evidence of disease" on their scans. Getting to NED is the holy grail of cancer treatment and something every single cancer patient - regardless of cancer stage - hopes for. It means cancer cannot be detected on your scans. That's as good as it gets.

But there's a catch.

In order to get these two amazing drugs, called Herceptin and Perjeta, you have to do chemo with them first. They were studied in clinical trials with chemo and thus released to the market for use with chemo and their combination has become the standard of care for first-line Her2 positive treatment. Most doctors won't prescribe them without chemo first and even if they did, insurance most likely won't pay for it without chemo first. (Which goes to show you who is really in control of your treatment - insurance, not your doctor. And if you haven't already guessed, I know this because, yes ... I tried to get around it.)

The chemo I agreed to is called Taxol and it's delivered in small, weekly doses. Herceptin and Perjeta (H+P) is given once every 3 weeks. The "plan" is to go for 16-24 weekly infusions of Taxol with H+P every three weeks, and then drop Taxol and continue on just H+P for as long as it continues to work (e.g. scans don't show any progression). We'll scan 6 weeks after THP treatment starts to assess if things are trending in the direction we want them to. As I'm sure you can now understand, this is why I agreed to the port - despite my sincere desire to not have one placed. As a stage 4 patient, the odds that the port comes out are slim, as the assumption is I will always be in treatment. Aside from it not coming out, it will be ANOTHER visible reminder that I am a cancer patient. It will be visible to me and most likely many others depending on the neckline of my shirt. Ports tend to be higher up on one side of the chest. Hello summer in Texas, meet my port.

So how am I feeling about all of this. Well. I'm pretty over whelmed and seriously tapped out emotionally and mentally. I took time away from work this week and next so I can just breathe and try to get my mind around everything and get to some place of acceptance. I tried to explain to Camden tonight before bed about what I'm having done tomorrow and it nearly broke me down into tears. I'm not looking forward to explaining to him how the medicine I'm taking will make my hair fall out. I'm also not looking forward to how Nicholas might react seeing me with a bald head. He might be fine, or he might be scared.

And can we talk about my hair for just a few sentences. It JUST started to feel normal again. From stress, pregnancy shedding, radiation, menopause ... the baby hairs actually have some decent length and I can feel my original hair thickness again. It's been like - 2 years since my hair was normal. And yes, yes, everyone says it's JUST hair. Well you know what - yeah ... it's just hair until it's YOUR hair. Go shave your head right now and keep it that way for the next 6 to 9 months and then tell me if you have any reservations about it. There is a small chance it doesn't fall out on this dosing schedule of Taxol, and instead just thins out ... but it's a very small chance. So I'm not expecting it. I'm hoping ... but not expecting.

And to answer the other question of how did the cells make these big changes? Well, I have a hypothesis. (Of course I do!) In 2016 when Stanford reviewed the original tumor cells from 2010 (yes, the slides are still being stored), they noted that part of the cancer cells had a section of Her2 positive cells scoring at a level 3 (which is the highest, meaning it was very strong). My hypothesis is that the anti-hormone therapy that I was on in 2016 (Ibrance and Letrozole) did it's job and killed the majority of the hormone+, Her2- cancer cells. However, the pressure from removing all the "hormone keys" if you will, forced the cancer cells to find a new way to grow (because that's what they do, they're broken and don't know how to stop growing), and that new way to grow was to through the already existing Her2+ locks. So new tumors started to appear in my liver and a handful in my right lung and based on the biopsy, we believe these new ones are all hormone-, Her2+. That isn't to say there aren't any of the hormone+, Her2- negative cells anymore ... it's actually very likely that there are. It's just that we didn't get a sample that had them. The hope is that chemo will "mop those up" if they are still surviving.

Is the Universe trying to send me a message? I honestly believe in my heart that it is. Aside from the "small-cells-big-changes" URL crossing my path at the two critical points in time, I also kept seeing the word "fearless" on days when I had to make very hard decisions. I saw it 3 times specifically - twice when I was researching and discussing treatments ping-ponging between opinions and the third time was this week - as I mentally and emotionally prepare for my port and chemo, as if it was a reminder. Why is it significant? Because I was - and still am - terrified of going through chemo! Additionally, the night before the day I had my doctor's appointment to discuss my next treatment decision, Camden randomly said to me as he was going to bed, "Mom you need to cut your hair. It's getting close to your back." One would think it's not some uncommon thing to say, however Camden NEVER comments on my hair. Never. And it stopped me, and made me take notice. That next morning after he said that, I had my doctor's appointment and I opted to go down the chemo road because my local doctor would not treat me with the "other" path I was trying to take (that's another long story). And finally, a good friend of mine randomly sent me a sign - like literally - it's a wooden sign - that says "cured and done." Any one of these things separately I wouldn't weigh very much, however together ... they do give me pause ... and a good bit of hope that I will be one of those exceptional responders to this drug combo for many, many, many years.