Ask a Survivor
What are our options to continue treating this recurrence once you’ve gone through SOC and are currently “stable”? I hate the idea of sitting back and waiting for growth just to try a new treatment. Expanded use is an option is you can get it approved, but are there any other options? Do we need to invoke right to try? GBM is not a sit and wait disease. That usually ends bad. I know there are diet CBD/THC and other holistic things and also COC protocol and what not but many hospitals do not support this. So what are our “modern medicine” options other than “wait and see”...and eventually recur? It’s an awful feeling after fighting so hard for so long. Someone must have a better way...
I've seen so many variations on this question and it nicely encapsulates so many sub-questions that I thought I'd take this as is. First of all, I totally understand the survors' impulse to hyperactively overtreat cancer, and medicine's reluctance to do so; and how I've reconciled the two (again this is just an advice column and is not a substitute for a qualified medical opinion)(however, given the 95% overall GBM death rate, it's not like qualified experts are doing a bang-up job of managing this disease).
From a survivor's perspective, when you're in treatment, you're in a proactive mind-set. You have the initiative; you have a support system that you're interacting with and can call upon. You are aggressively micromanaging every last detail of your health, and beating a mostly-fatal illness, and it's simultaneously invigorating and depressing and terrifying and amazing; and then you get a clean bill of health, and all of that immediately evaporates. I have not experienced post-partum depression, but I imagine it's comparable. However, just like giving birth, it's important to realize that the easiest part of the process is done. You would be amazed at how hard it is to stay healthy and keep all of your post-treatment disease management going. If you're desperate to keep treatment going, I have heard rumors of patients staying on temodar (standard GBM chemo) and Optune for 2-3 years after being declared No Evidence of Disease.
However, from a medical perspective, there are definitely drawbacks to over treatment. First of all brain tumors come back with different pathologies and diagnostic characteristics; and they tend to come back resistant to previously-used treatments. Right now, there are two or three safe, approved chemo/immunotherapy agents approved for GBM (and I'd paraphrase the Al Musella Foundation that surgical resection is rarely effective, but it offers a starting point to other, potentially better treatments, such as tumor vaccines, or gliadel wafers, experimental treatment, etc), so you don't want to burn through them before the 5-year mark (before anyone asks; we don't all universally drop dead at five years, that's just when most clinicians and epidemiologists stop tracking us). Think of treatment in similar terms as antibiotic use - keep it up long enough, and the only microbes in your body will be invasive and resistant to treatment.
There's also the more troubling aspect that the side effect of most treatment are other cancers (brain cancer for radiation; blood cancer and anemia for chemo) or diseases (all of these things increase the risk of vascular disease and opportunistic infections). In short, treatment for the recommended amount of time is good, too much or too little is bad (like all medicine).
With all of that in mind, look at remission as a vacation in which you're training - you're training for recurrence. I mean that in a very literal sense - something like only 25% of GBM survivors qualify for further, aggressive treatment in the event of remission or metastasis. From what I've heard from friends with GBM (or friends who have family members with it)(pro-tip if you're wondering what to say to AYA survivors; "My grandmother died from that" is in the top five "NEVER Say That to Us" list) usually that decision is made when oncologists don't think the survivor will survive treatment, or treatment will be ineffective. Obviously, the best way to overcome that first hurdle is to pack on ten pounds of muscle and make sure your oncologists never hear you complain.
As for the second issue, there are all sorts of survivor urban legends (including the COC protocol, drug repurposing, and off-label usage) that are largely inaccurate but have a kernel of truth to them. Drug repurposing/off-label useage is a very real thing in pharmaceuticals and on Planet Cancer - SSRIs, melatonin, and THC are correlated with sensitizing glioma cells to chemo (and are correlated with better long-term outcomes); and the experimental drug I was treated with (Marizomib) is a repurposed multiple myeloma drug (which is also being tested for use in certain forms of leukemia)(and, as my cancer buddy Jenna pointed out, the experimental drug she's being treated with is being tested for use in certain brain cancers). There's definitely possibilities there, but you don't want a "Ready, fire, aim" approach that I hear so much about. Even though there are plenty of things you can safely take for years without side effects (THC and melatonin), things you can safely take for years under medical supervision (antidepressants), you don't want to leap into experimental treatment and more chemo without cause (and tumor vaccines usually require a sample of whatever tumor they're targeting, so you can't really preemptively get those). Unfortunately, your post-treatment options are limited, and you do have to adjust your expectations. I would advise everyone to use those brief periods of remission to cultivate multiple second opinions (the waiting list for MD Anderson is six weeks, you probably won't have that kind of time in the event of recurrence; you want to be on their list of patients before that happens).
However, if a physician or hospital flatly refuses to treat you or refuses the course of treatment you have your heart set on, I would caution against invoking "right to try" or similar laws because most of the time, folks who don’t want to treat you or don’t want to try a particular treatment are doing so because either they aren’t qualified or don’t feel a specific treatment will work. I’ve never had long-term success when forcing people to do something they don’t believe in, or honestly don’t feel they can do, but if you feel comfortable gambling your life on it; I’d be delighted to hear how it turns out. This is when cultivating second and third opinions really pays off, because, if one oncologist turns you down, you can just scroll through your contacts list until you find someone qualified and willing to treat you (this approach actually worked for my friend, Jessica Morris, after she was disqualified for a vaccine trial)(and it worked for me after I was disqualified for a different vaccine trial). Usually, if Big Bob’s Steak and Thoracic Surgery isn’t willing to treat you, there’s probably a good reason for that, and I wouldn’t waste time rubbing their nose in the law (in addition to the standard horror stories of survivors with curable cancers who forego treatment in favor of essential oils and yoga; I have a few horror stories of folks with curable cancers who went with the low bid, or decided to let the hometown hero treat them).