Thursday, March 23, 2017

In the weeds

So here we are - 6 weeks from my most recent scans that showed progression and I have yet to start my next treatment. And let me tell you - it's been an intense 6 weeks. (And also - if this post sounds a little off - a little different and not as clear as they usually are - it's because I started writing this 3 weeks ago and I'm just now picking it back up. So bear with me as I try to fuse past and present thoughts. And also forgive me for the length ... it has been 6 weeks after all.)

I have no better words for this situation that is "progression" ... Other than "shitty," I guess I could say it's "so, so, shitty." If you know me in a personal setting - you know I tend to lean toward easy-going behavior ... sure - whatever works. Whatever you want ... whatever makes things easiest for you. I tend to accommodate and I'm quite happy to actually. I don't like imposing my wants/needs/etc... on others. I'll take care of me, as I always do and I'll do it without imposing on others. It's how I am. It's me. I identify with the Pisces persona a lot actually - I'm water - flexible ... flowing ... easy-going.

I'm also quite analytical however, and try to be as objective as possible in as many ways as possible. I try to review every decision for what it is, what are all the options, what are all the possible outcomes, what are all the possible pros and cons, what consequences can we anticipate ... within reason of course. I know I can't account for every possible option, outcome and consequence - but I can certainly anticipate a lot based on my prior experience and the experience of others.

So as you can imagine - in a situation like this - the uncharted waters of progression ... I got fucking stuck (hence the 3 weeks to write one post). There's no flow to go with and there's minimal experience to draw from. I have a list of questions that is 20x the length of the list of answers. My doctors can only tell me what statistics, clinical trial data and practice experience has told them. Anything I want to know specifically like - how do we know it's the cells developing resistance and not the medications just crapping out, as that happens sometimes. How do we know that just switching to a different version of the same Rx wouldn't be effective? Maybe my body isn't responding to the med the same and it's not the cancer cells growing resistant at all. We don't. We don't know any of it. It's seriously trial and error and while I almost always seriously enjoy just giving things a try and seeing how it goes - this is kinda one of those things that doesn't give a lot of room for error.

A lot of trial ... and little room for error. And not to mention - I don't want to be a fucking guinea pig!

So after 5 weeks of research, 4 visits with 3 different oncologists (yes 3), correspondence with 2 clinical trial coordinators, on-going conversations with a cancer support organization called Cancer Commons, and multiple posts and even more responses in 6 different closed metastatic breast cancer Facebook groups, I've sorted through all the paths forward that I know of, and have taken steps down one of the paths. And what were those paths? Well let me share:

From my local oncologist:
Option 1: Taxol (which is IV chemo, once a week for 3 weeks, one week off, repeat)
Option 2: Xeloda (which is pill form chemo, taken 2x daily)
Option 3: Exemestane and Everlimous (a different aromatase inhibitor than what I'm taking now and an mTOR targeted Rx)
Option 4: A clinical trial with Taxol and another drug. I don't remember much about this one because I immediately dismissed it because it had to do with indefinite Taxol.

From my oncologist at MD Anderson:
Option 1: Xeloda (see above)
Option 2: Doxil (which is IV chemo)
Option 3: Exemestane and Everlinous (see above)
Option 4: A clinical trial at MD Anderson that combines Exemestane and Everlimous (which is the standard of care treatment, available to all) and Ribociclib, another CDK4/6 inhibitor, similar to Ibrance (which I was on for 11 cycles/months).

This trial is conducted at MDA and so it would require me to travel to Houston on days 1 and 15 of the first two cycles/months of treatment (so one time every two weeks for 2 months) and then once a month after that. It also would require me to have all my scans there as well. Houston is 3 hours away and we only have one car. Essentially it would require me to rent a car on those days as well as shift the entire burden of the household on Mike for those days - in addition to his work and travel schedule. It would also mean I'd make the majority of the drives myself, because the ask and pull from work would be too burdensome and too frequent for Mike. (We're honestly saving that "need" for when we really, truly need it - which I hope is a very long way away or better yet - NEVER.) So it's not ideal in regard to convenience and it's a trial. So there's no published data on how well these drugs go together. I'd be part of that data. The drugs themselves are an aromatase inhibitor (like the Letrozole I'm on now) - so a hormone inhibitor - as well as an mTor inhibitor, which is a targeted therapy for the mTor pathway of cell division, and then the CDK4/6 inhibitor, another pathway of cell division. The trial is also designed for people who have experienced progression on a prior CDK4/6 therapy (which is Ibrance because it's honestly the only CDK4/6 approved on the market). So - the thought is - this drug combo shuts 3 doors of cell division with the hope that by shutting all 3 at the same time, the cells will go into suicide mode because it can't find another way to divide. That's the theory.


None of the above sound incredibly amazing do they? Hormone therapy or chemo. Or a trial using similar hormone drugs to what I was just on but I need to drive 3 hours each way - A LOT of times.

So I kept digging - because - for those of you who know me - when I don't like the options that are presented to me - you know - I find other options. Now whether or not those options are good ones or bad ones - who knows. But what I do know, is there's always more options.

Aside from the amazing support and love and encouragement and soapbox cheerleaders that you get from the members of these private, metastatic Facebook groups, you also get a TON of information. Any side-effect, any medication, any weird rash (sometimes with photos!), any obscure homeopathic remedy - If you have a question about it, and you post that question - you are guaranteed some answers. Some shared experience among thousands of women, each weighing in when they can about what they know. This kind of pool of info also shares the latest articles on newly released drugs or ... you guessed it ... drugs in trials. Remember when you were young, and your parents were always trying to get you to learn from their experience so you didn't repeat their mistake? It's kind of like that. Except - better. I learn from these women how to better navigate my own care because they're all in different places and all are sharing how they got there, what hurdles they had to overcome, good things to know, mistakes to avoid, questions to ask, etc.

So in this crazy excess of information, I happened to catch a post about a clinical trial called NCI MATCH. It's a large scale clinical trial, open to any kind of cancer, focused on treating cancer based on genomic mutations only. They're trying to find out if treating a found mutation with a drug that targets that mutation is better, or not. They now have 24 drug arms open, meaning 24 different kinds of drugs that each targets a single, specific cancer mutation.

In February last year, when all of this got started, my original biopsy was sent off for "sequencing" to FoundationOne. That report told me that I had two mutations that are currently known to be significant based on scientific research, and a handful of ones that are currently of unknown significance. Of the two that are known to be significant, one is actionable. That one mutation is called FGFR2 amplification. In the handful of variants of unknown significance, there's was also FGFR rearrangement. After a few hours of fighting (aka ugly crying on the phone pleading) to a poor customer service person to release the extra data they have about this amplification, they finally sent it to me "for research purposes only" as the gigantic watermark indicated. What it told me was that the amplification was about 5-fold. Why is this important? WELL ... because the NCI MATCH trial has a drug arm for the FGFR1/2/3 mutation. Why did I lay the weight of my life hanging in the balance on a random customer service person? Because in the past gastric cancer trials where this specific drug was used, the data showed that better responses were had by those who had a higher amplification of FGFR2. So ... my amplification of 5 is high? Not exactly. 3 and below probably wouldn't be worth trying, but 5 is like moderate ... maybe worth a shot. But I really wanted to know what the amplification level was because it wasn't included in my original report and I needed to know it in order to make a freaking decision on what to do next! I had told myself that if it was 3 or lower, I'd most likely go the Xeloda route. But if it came back over 3, that I'd go forward with pursuing the MATCH trial. And neither of the IV chemo options appealed to me.

And - in part - a large part actually - I'm glad it did. Pursuing getting into the trial has led me to an oncologist in San Antonio who is hosting the trial at her practice. (Not all trials are available everywhere.) I showed up armed with scans and genomic reports and questions and intentions and an intended way forward. I left with more options on the table and a really strong desire to continue to see her as my primary oncologist. Go figure. What I liked so much about her was that she believed chemo should be reserved as long as possible. She said chemo is good for faster responses, not better responses. She said she likes to pursue the endocrine (hormone) strategy as long as possible and trials when possible before resorting to chemo. This kind of strategic approach resonated very well with me (for obvious reasons). Aside from her thinking, her bedside manner was amazing, she looked at my images, she was prepared to talk with me, and her knowledge of clinical trials was robust.

I left with the direction to think over everything we discussed. I called a couple days later to get started with the MATCH trial as well as another trial called SOLAR-1. SOLAR-1 is dependent on me having a PIK3CA mutation - which last year was not present, but can develop over time, so she wanted me to be tested for it now, just in case, because she's confident the drug is going to get approved, it's showing great results, but by the time it gets approved I may not be eligible to receive it (aka insurance won't pay for it), since new drugs are approved for specific lines of treatment (as your first treatment ever or second-line treatment, etc.) and in a few years, who knows what line I may be on.

But there are conditions to participation in these trials. You have to pay to play essentially. Since they're research trials, you have to do things their way. The MATCH trial wants a fresh biopsy, no more than 6 months old. They want to sequence the cells in their lab. They want to keep the data, the left over tissue, etc. After they identify the mutations, they get to assign you to a drug arm they want you to be in. So my whole intention of dictating which drug arm I'd be willing to go into ... is moot. They pick. Not me. Thankfully, from what we know right now, I only have one actionable mutation - so the odds that I get assigned to the FGFR2 arm are high. If the test comes back with different or more mutations, who knows. And ... since I consented to the SOLAR trial as well, and since I need to get a biopsy for MATCH, I'm also getting a biopsy for SOLAR at the same time. The SOLAR trial is currently only accepting people who are positive for the PIK3CA mutation. Why can't they just use the biopsy results from the MATCH biopsy? Because researchers don't share - at least - not in this case.

So what does all of this crazy long post mean? It means I go in for a biopsy this Wednesday 3/29 at 10 am in San Antonio. The MATCH trial is going to make 4 passes through one of the tumors to get 4 core needle samples. The SOLAR trial will be 1-2 passes in the same, or different, tumor. It means it's all going to be swiss cheese in the tumors after they're done. Part of me is kinda happy that in the biopsy process they're removing some of the tumor cells. The other part of me is scared that they're literally poking the bear and going to piss things off. A couple weeks after each respective trial gets their biopsy, I should know what the results are, and from there I'll know what treatment drug I'll be on. Then shortly after that, we'll know how my body is tolerating it in regard to side effects, and then I'm sure 6 weeks after I start the medication, I'll go in for scans. There's a whole lotta hypothetical right now but one thing is semi-certain ... I have to have a biopsy.

In the interim - I'm still taking letrozole, but who knows if it's doing anything - I can only hope it's still a little bit effective. If not, I'm just hanging out and who knows what's going on inside. I'm hopeful it's nothing like what my mind is imagining, that's for sure. Aside from all this, I still feel very normal, better even, now that I've stopped Ibrance. So we continue to move forward, one day at a time, doing what we do - raising the boys, embracing our first, beautiful spring in Texas, playing in the pool a little bit at a time as it slowly creeps over the mid-70s water temp on an 80 degree day ... and trying not to let so much time pass before I post again because when I do ... it obviously turns into a novella! The end. For now.


  1. I have worked in this field for quite a few years as ED of the founding chapter of what is now Cancer Support Community. I am also a breast cancer survivor. I commend your choice to explore genomic mutations and finding an oncologist so active in the research trial field. Yes, you have to do it their way, but that's where the amazing advances are happening. I also completely agree with her thoughts on pursuing hormone strategy for as long as possible. While I am no medical expert I wanted to send both positive thoughts and commend your amazing advocacy for what is best for you!!! Best regards.

  2. Hi Melissa. I still read and follow you, Mike and your adorable boys from good 'ole Silicon Valley :-) I pray constantly for your health and for your strength. Thanks for continuing to FIGHT like hell and share your journey. I see you resting peacefully in a hospital bed on Mike's Facebook and I feel very positive energy. I am so sorry for your struggle ...Never Never Never Give Up. Love and Hugs, Kathleen

  3. Its really motivating story for those who are struggling from cancers.

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  4. It is very sad to know you got Cancer but don't lose hope keep fighting and you will have a normal life again.