So I’ve crept out of my shell a bit this week on social media. More like dragged myself kicking and screaming, really — Twitter is anathema to how I communicate. I suppose on one hand 140 characters makes for a great editor but it’s too draconian for me … I spend more time trying to cull down characters than communicating. You don’t get nicknames from editors like “Captain Verbosity” and “the King of Clause” and then do well on Twitter.
All I can say is if Twitter had been one of my editors back in the day when I was a reporter I’m pretty sure by now I’d have peed in their coffee cup.
I imagine I’ll get to the point (in life, and perhaps this very entry), if I live long enough, where I’ll just start replying “fuck you” to everything so I don’t have to deal with 140 character limits anymore. EIGHT CHARACTERS IS ALL I NEED, NOW GET OFF MY LAWN YOU CRAZY KIDS WITH YOUR TWEETS AND TINDER AND INSTAGRAM HOOKERS.
But when in Rome, right? So this week I’ve participated in a few, for lack of a better word, groupthinks on Twitter and the information I’ve heard as a result has been somewhat startling to me. I didn’t even drop an f-bomb, at least I hope not? Anyways I’ve spent a long time just reading Twitter stuff from Myeloma “royalty,” but it’s a pleasant trip to actually interact with them. It reminds me of being an intern reporter back in college and being able, thanks to the newness of the whole ‘net thing, to email the lead investigator on the Unibomber case at the time and get almost an immediate response. I have a feeling as more patients realize their docs are on Twitter that that access may fade a bit, of course, or become more broadcast only, but for now it still has that Wild West-ish feel to it and the niche elite still interact with us plebes.
Hey if nothing else I’ve learned on Twitter that one of the Mayo Clinic docs who’s always Tweeting is a Megadeth fan. Now that’s just cool. It’s also the only tweet I think I’ve ever understood from him, so there’s that.
Anywho, May is dedicated to raising awareness of clinical trials. At a chat on this last night hosted by @CureForward which you can read here, the last question was (paraphrasing) what are you going to do to raise awareness of CT issues?
A4 – This =) Now all 10 of my BELOVED followers know more. And I’ll bust out a blog entry on my ct with links to this stuff. #ctsm
— RichVsMultMyeloma (@richvsmm) May 4, 2017
Normally I wouldn’t do that (I write when I feel like doing some emotional or mental archaeology, not as a public service) but what I’ve learned this week from participating has had me thinking that this is something I should talk about here. So let me set up my comments with one of the more startling graphics I’ve seen this week:
When the decision was made to switch my chemotherapy to Pomalyst, my oncologist was recruiting for a clinical trial that added an HDAC inhibitor (ACY-241, also known as Acetylon Pharmaceutical’s Citarinostat) to what I was already going to be using. The argument for this was I was going to be on Pom & Dex (shudder) anyways, so why not add this? The confidence and feeling that this was a standard move was great, but as a result I apparently missed out on a lot of the difficulties many patients face with CT’s. For example, there were tests and paperwork to do, but thankfully CBCI has researchers that help with that — in fact the one assigned to me, Sarah, ended up being such a rockstar as a contact point that the process seemed easy from my perspective. She and the others answered all of my questions and more, as usual being my best advocate (which is one of many reasons I switched to CBCI in the first place).
Given some of the troubles I had during my CT that was critical. While something in that three-drug cocktail worked inasmuch as my numbers didn’t get *worse*, I missed a lot of weeks of drugs because one or more of the drugs was pounding on my system so hard my immune system went on vacation. As in “four hospitalizations for pneumonia and now I’m on IViG every month” vacation. Having someone in communication with the trial hosts and dealing with all of those issues related to my immune system was gigantic.
Not having read up on CT’s in general I didn’t realize at the time that some of the things I was taking for granted in this process are rare for most patients and I was lucky. Such as:
- Most patients don’t have the navigation help and advocacy that I was privy too.
- Many patients have no idea about clinical trials; worse, neither do their doctors. The information is scattered, outdated (that government site I linked above is not current, as I learned last night) and it seems as if patients are more lucky to find one than anything else.
- The paperwork can be impossible to understand for normal folks but it’s pretty critical you understand it.
- Clinical trials can be an effective first line of defense against cancer, not just where you go when everything else fails (a common misconception).
- Not all trials pay for your medications while in the trial — I assumed that was a standard.
I realized this week as well that a lot of the questions I asked and those around me were concerned about were based on misconceptions and just a cursory, at best, knowledge of how clinical trials actually work. Unfortunately outside of “hope you have the right doctor” there’s no easy fix for this. Scattered information, uninformed doctors, costs, travel requirements, complex paperwork full of jargon and legalese, concerns about being a placebo recipient, timing, having to find the information themselves and sell the idea to their own doctors, etc. Well and the whole death thing, since most people only hear about a CT when someone died participating in one and assume that’s a big risk.
A lot of folks are using social media sites like Facebook groups, Twitter and websites to try to solve these issues but that’s part of the problem, sadly. Just like with regular news, there’s such an overabundance of non-centralized information that your average patient is not even going to know where to start much less be able to navigate even just a handful of the issues mentioned just above. And for every @Myeloma_Doc who’s advertising daily on Twitter for the trials at their site, God only knows how many people who are running their own trials don’t do so.
So yeah, it’s a shitshow. At some point some governing body or group like @CureForward is probably going to have to centralize and disseminate information that cuts through these problems. Given that it’s easy to assume everyone has gone digital (but I know for a fact that’s not the case), I personally think a hard-copy brochure in every oncologist office that comes from ONE source with pointers towards questions to ask your doctor, where to get trial information and dispelling myths and rumors is a good solution, but that’s just the tip of the iceberg.
So there you have it. This is more of a blog entry for newly-minted members of our Doomed tribe, although if you are getting first-line advice here I’d recommend immediate seppuku via KFC spork. But here’s a few things from my personal list of what I’ve done regarding CT’s that may help you on your own path:
- Talk to your oncologist. Are they aware of any trials? How do they prioritize recommending them in the line of treatments? Have they ever run one? Do they have in-office folks to help you navigate the process?
- Read up. It sucks, but right now the information is everywhere and nowhere. Go to the biggest news sources for your particular flavor of cancer (every cancer has one, even tiny lil’ Myeloma has several) and read up. Check the forums. Make a list of what trials you find, what other drugs (if any) they are using in the trial, if it has a local arm so you can cut travel down, if the trial host is paying for your care while you are in the trial (huge deal), etc.
- Check out your insurance information. I know the stuff they give you reads like some alien manuscript, but you should be able to find out at least in a general sense what they will cover for clinical trials.
- If your oncologist is no help, well, you have a decision to make. Keep in mind however there are a ton of folks online that would be more than happy to help you, from individuals with experience to groups putting in the work like CureForward, ASH and others. I’ll be honest, in my opinion and experience if your oncologist (or any doctor) is not your biggest advocate, the most informed person you know about your disease and the most seemingly caring doctor you have, you have the wrong doctor. Again your mileage may vary, but don’t die prematurely because you were afraid to ask for help from someone who isn’t helping you, or had to initiate your own treatment path.
- Be pragmatic and don’t fall for the hype (from your doctor, big pharma, or anyone else). Immunology, CAR-T, virology, CBD oil, cramming Turmeric up your own ass, whatever … new technologies are coming out all of the time, but don’t let the hype fuel unrealistic hopes and then become a source of crushing disappointment and depressive episodes if your results aren’t the best case scenario. Not everyone gets full remission or 20 years off of one drug like we’re always reading about.
- That being said, if you want to try the bleeding edge stuff years before it hits the market, clinical trials are how you do it.
- Help yourself while paying it forward. Obviously when diagnosed we are a lot more concerned about ourselves, but keep in mind the drugs you are taking for your cancer wouldn’t be on the market without clinical trial participants. Done right you’re at little risk and can get your treatments paid for, so give some serious thought to paying it forward yourself by participating.
Lastly, a few links to get you started:
- https://www.cureforward.com/ Mentioned several times here and the organizer for the chat linked above. Definitely good information and sounds like it solves a LOT of issues patients have.
- http://www.myelomabeacon.com/ For Myeloma specifically this is one of the best sites I’ve found. Columnists, news, and trial information. I’ve had some great conversations about what I’ve read there with oncologists — be informed about what’s going on with your cancer!
- Do a search on Twitter for #ctsm and #mmsm. Especially right now there’s a lot of information and links to follow from #ctsm, and some great articles. Given the fact that most articles I find on cancer are so jargoned to Hell that their unreadable I think you’ll find tailoring your tweet searches a bit can have much improved results.
- Look at the follower lists on Twitter once you find a great source of information like @CureFoward, @MyelomaTeacher, etc. From their follower lists you will find tons of sources that will be relevant to you and your flavor o’ Doom.
- Go here. Push the button. Give this to all of your friends who just don’t get the whole cancer thing. DO IT.
My apologies if I’ve left someone off (just comment and I’ll add to that list) … at some point I really need to put together a “handy links” page. I promise no more than half will take you somewhere totally evil and unrelated. I’m altruistic like that.
So there’s my PSA-ish bit on clinical trials. Dara tomorrow and I don’t have to be there until 9:15am! Any reprieve I get from waking up at 6:00 am for 7:30 am appointments is a big deal. PET Scan on Monday at 8:30 am so following up on making sure that’s scheduled is now off the to-do list. Need to set a reminder to not get the mandatory Starbucks on Monday morning. Need to listen to more High on Fire this weekend. Here’s a bonus PSA … if you think that song sucks, double the volume. Keep doing that until you are buying Matt Pike t-shirts on Amazon or decide that no, really, HoF sucks.
One last thing. In answer to a message I received, yes I call people with cancer the Doomed (mostly myself). Part of that is my philosophy on things, part is an homage to Hunter S. Thompson and mostly it’s my sense of humor. And yes, I like the word “Doomed.” Almost as much as I don’t like people telling me to shift my attitude on my own goddamn disease. I have a pragmatic attitude towards my cancer but I’m also told by folks on a weekly basis how amazed they are at how good my attitude about this all is. You may disagree with using “negative” words and phrases regarding cancer and props to you if you do, sincerely — but if you are offended or think I’m doing harm to my own mental fight or others’ against this death sentence by using these things, perhaps, respectfully, my phrasing and your perception of the world are not compatible.
In other words, whitewash your own life, not mine.