In 3 more days, it will have been 9 months since I rushed John to the ER. A lot has happened in 9 months. Most of it has been non-stop crisis mode and a series of hospitals. I registered this domain back in March, and wanted to write about everything happening to us along the way. Have a space to share information and vent. But it has been hard to carve time, much less bring myself to it. Mainly because it takes time to process the feelings, even in writing. Even when we all need to vent at times.
As everything caved in and came down on us that first week, I guess I sort of cried out for help to all my friend online and off, before the waves folded in and things went dark. I didn’t remember to share with everyone what John was diagnosed with, just that he was having brain surgery and that he might die.
I took John to the ER thinking he was having a stroke. He wasn’t. He had a tumor the size of an orange in the left side of his brain. I learned new words. Glioblastoma Multiforme (GBM), a grade 4 terminal brain cancer.
It is no exaggeration to say this is possibly the scariest cancer there is. There’s not only no cure, there’s no clinical use of the term “remission” either. Anyone who uses that term with GBM isn’t medical or they’re referring to a different kind of brain cancer. That statement is not a lack of faith or hope speaking. It’s just the facts.
John was 47 at diagnosis (just turned 48 last week). His initial prognosis was maybe 12-18 months if he did brain surgery and the combined radiation/chemo treatment that’s “standard” for fighting glioblastoma. Without treatment, it would be maybe 3 months.
That very prognosis is what they tell nearly every GBM patient, because it’s the current mean survival rate of this devastating orphan disease. But they still don’t understand enough about why people get it, or why/how it happens, or why some people survive while most others simply don’t. Which makes it pretty impossible to really tailor a very specific prognosis for an individual. No matter how large or small the GBM, this window is pretty much the prognosis.
“Long-term” survival for GBM victims is defined as surviving for over 2 years. Only 20% of patients with glioblastoma make it to 18 months, 12% of GBM patients make it to 2 years and less than 5% make it to 5 years.
It is the fastest cancer, with the lowest survival rate. And one of the most underfunded cancers in research. Still no one knows what causes it. Not really. No one does anything to get this cancer. Even crazier, as a primary cancer it literally develops overnight. It can double in size every 2-4 weeks, leading doctors to tell patients upon diagnosis – it’s true, just 4-6 months ago there wasn’t any cancer in your body. Even odder, most primary GBM patients never have any other kind of cancer. It just suddenly happens in the brain, kind of like being struck by lightning. And no one knows why.
The crazy goes deeper. John was the poster child for fitness and health. Organically minded, paleo, you know – not the guy you’d expect to have any cancer ever. But it turns out – even that is not uncommon with GBM. There’s an unusual number of vegetarians, fitness folks, etc. who become victims. GBM is a series of DNA errors that no one can explain. Only 3% of cases even have a genetic component. There’s been a proven connection to agent orange in Vietnam. Certain types of radiation exposure. And that’s it so far. There is so much cancer in my family, even pancreatic. And yet I was not prepared for this mind-boggling experience. Still feels like an overly dramatic Hollywood movie. Any minute now… please yell cut.
Since that beginning back in March, John has had 2 brain surgeries. The first was a failure, done at the local hospital. The 2nd was done at MD Anderson. During the 2nd surgery an artery was compromised by the tumor built around it. It was lost and John suffered a stroke. They weren’t sure if he’d be able to walk or talk when he woke up. He pleasantly surprised everyone and did. Although his aphasia was and still is significant. In spite of the loss of the artery, they were able to remove all the brain cancer they could see. However, this kind of cancer operates at the cellular level, which they cannot see. So while the mass was removed, they can’t find and remove individual cells with surgery. Hence, surgery is never a cure. it just helps in the chemo fight against GBM to remove as much as you can first.
The next step after that was the standard treatment of 6 weeks of combined radiation and a chemo agent called Temodar, also at MDA. So we did the combined treatment as guided, but it was a failure, just like the 1st brain surgery. After 100% surgical resection (removal of the brain tumor), glioblastoma came back and spread throughout his left brain in just 3 months. It’s not even a tumor anymore. It’s a diffused cloud of cancer. And John’s eyesight was affected, causing him to not be able to continue therapy for his aphasia.
It turns out that John’s cancer is incredibly aggressive even for GBM. And somehow it’s the type that has the ability to not only resist toxins, but heal itself. 😦 Simply bewildering. It seems literally superhuman. His particular type of Glioblastoma is the unmethylated type. Which generally means it can resist and repair the damage inflicted by the chemo agent Temodar. However, the test to find out whether GBM was methylated or unmethylated takes weeks to get back. And MD Anderson wasn’t going to wait around on treatment. As soon as his surgical scar was healed, they got him started on the standard combo treatment of radiation/Temodar. The problem is, while recurrence is incredibly common, recurrence within less than 3 weeks after completing the 6 weeks standard treatment is not so common. And for it spread throughout his left brain into multiple parts of his brain, from nothing that could be seen to everywhere, was shocking to his doctors as well as to us.
No one knows what his prognosis might be now. It’s all rather experimental from here. And there are few treatment options left.
John’s now on another treatment called Avastin (an angiogenesis inhibitor), combined with a chemo agent called Lomustine. In general, it doesn’t work for about 70% of patients from the get go. But so far it’s working for John. Still, Avastin doesn’t have a very good long-term success rate against GBM but while it is working it’s known to improve the quality of life greatly. And I would say we definitely are seeing that with John. Of the patients that Avastin does work for, it’s only successful past 5-6 months in about 1/3 of the cases.
Combining Avastin with Lomustine showed some promise in earlier trials, and may help improve the odds of it working longer-term. Essentially John’s oncology team is trying to recreate the results of that trial. It’s now been 14 weeks since he started the new treatment. So far he’s responding to the treatment and the cancer has receded some. It hasn’t gone away, but it is greatly reduced compared to the shock of early recurrence back in July. And his (and by proxy my) quality of life is improving.
Sometimes it’s the little things like being able to talk and read that make fighting worth it. Hard to have “mind over matter” when your brain is being attacked. But finally, it seems he might be getting some well deserved encouragement. While the combo treatment has given us some hope, it’s a cautious hope. So far this combo treatment has not proven to surpass the overall survival rate of any other treatment.
We hope John continues to do well on this treatment and that this medicine successfully kills his cancer and that he regains his full capacity to communicate and live life. If not this, then something else that MD Anderson feels is better. However, as his care partner, I’m working on laying the groundwork for backup plans in case this treatment fails and MDA runs out of treatment ideas. So far, John does not currently qualify for any trials. Efforts I’ve made at reaching out to various places have not born fruit (yet). I still have more possible leads to check out. A couple of friends are helping me research so I can keep plugging away at a backup plan. Because the one thing these last few months have taught me is that timing is everything. In fact it’s crucial.
That said, John has been able to do some things these last weeks that he hasn’t been able to do since before the surgery. He’s finally been able to even laugh and joke, something that’s such an essential part of his laid-back personality that I didn’t get to see for months while his brain dealt with the trauma of it all. He’s regained facial expressions I hadn’t even realized I hadn’t seen in months, until I finally saw them again. Little by little, things seem to be coming back. And he’s regained some use of a couple of fingers that haven’t felt and worked quite right since the surgery.
It doesn’t mean everything is back, or that things are like they were before all this happened. They aren’t. But things have improved and turned from the edge of a dark abyss.
So we’re hopeful.
And I’m clinging to that.