Matthew Furman 1979 - 2016

Matthew Furman died of complications of metastatic melanoma on February 11, 2016.

View obituary (PDF)

This blog was his chronicle after receiving a diagnosis of Stage IV melanoma in his lungs in early 2013, and then in the brain in 2014. After his craniotomy and radiation treatments in August 2014, he decided to stop blogging. I still couldn't tell you why, because he never fully explained to me, but I suspect that he didn't feel that the story was going to end well. And it did not.

I will try to recap what happened after August of 2014 as briefly as I think possible, but so much occurred in the time since his last post.

In Sept 2014, he received a single infusion of pembrolizumab (Keytruda), the Merck PD1 immunotherapy. He was still under the care of Emory University's Winship Cancer Institute. A CT Scan done a few days earlier showed stable disease on the right lung (two tumors) and no new disease overall. He had ongoing speech and occupational outpatient therapy as well.

After that one-and-only infusion of pembrolizumab, Matt suffered fever, nausea, occasional vomiting, no appetite, and several infections (pink eye, UTI, flu) over the course of six weeks. He lost twenty pounds - with visible loss of muscle mass - and was severely weakened. After two hospitalizations, infection was ruled out as primary cause and "drug fever" from pembrolizumab was blamed. He started on prednisone again (ugh). The good news at the time was that lesions remained stable/improved and his onco team said no treatment needed, especially given his complications.

Going into 2015, he remained stable without any treatment. He still had lingering bouts of hot flashes / chills / nausea about 1-2 times a week, but it was manageable.

An April MRI of the brain showed slight increase in necrosis activity. This was the likely cause of continued seizures, speech deficits, and right arm/hand dexterity loss. And as the months passed, we saw continued worsening of those symptoms. In August, scans showed increased swelling and blood and/or tumor in the brain. He went in for his second craniotomy on Aug 27, confirming recurrence. He was initially too weak on the right side to stand/walk, but recovery was fast. He went to an acute rehab after just a few days.

While at rehab, Matt suffered a hemorrhagic stroke in the resection cavity. He underwent another craniotomy just 11 days since the previous. The stroke caused a lot of damage and Matt was left with severe right-side weakness and speech problems (aphasia/apraxia). He was again discharged to acute rehab, but troubles were far from over.

A DVT (blood clot) in the right leg extended and caused severe pain and swelling. Matt was re-admitted to begin anticoagulant treatment under observation, due to the brain bleed risk. Treatment was successful, but he had an episode of brain swelling that was managed in the Neuro ICU with high salt IV therapy. He was again discharged back to acute rehab. After a few good days, he then had another episode of brain swelling. After several hard discussions with the medical team, Matt opted to go home under hospice support and forgo further intervention and hospitalization. Further interventions -- whether medical, surgical, or radiation -- would not improve quality of life. And Matt was ready to be home, whether it was for another week or month.

On Oct 21, 2015, Matt went home under the care of hospice. At first he did quite surprisingly well for about a month. He received home PT and OT which helped strengthen him enough to be independent in dressing and wheelchair transfers. After Thanksgiving, though, the slow decline began.

On Feb 8, 2016, he got himself dressed and into his wheelchair on his own. He watched a Metallica concert recorded a few days prior. The next day, he did not have the energy to get out of bed. That night, he became unresponsive and died within 48 hours. He was surrounded by me (his wife), his parents, and my family and closest friends.

Matthew J. Furman
August 20, 1979 - February 11, 2016

Forever in the hearts of his wife, parents, family, and friends

Short Update

Just to keep you filled in, I'll keep it quick and bullet point everything:

• Last Monday was my last radiation treatment. The biggest side effect was fatigue, but I seemed to be over that pretty quick.
• The other issue was swelling, which I tried to keep to a minimum with Naproxen.
• The third issue was seeing a neurologist to follow up with regarding the intermittent numbness and "seizure activity" I've been experiencing since the radiation started. He said it was likely due to swelling but it could also be caused by scarring left over by the tumor and then my surgery to remove it. He upped my anti-seize meds and I've been fine since then. The bad news is that he'll want me on the meds for the rest of my life. Ugly news, but it's better than having to deal with that crap.

Otherwise I'm ok. There has also been a issue where my speech got worse and my hand lost some fine motor control as well, but that was also due to swelling and as that goes down, it should likely reduce as well. It's been slowly getting better, but I still notice some deficits.

Next Monday I do another brain MRI. Assuming that everything comes out negative, I should start my new treatment soon. I'll let you know about that when the time comes.

About radiation

So this past Friday we found out more about my radiation treatments as well as my continuing cancer treatment for the rest of my tumors.

I begin radiation on this Friday. I'll go for a total of five days, every other day (and skipping weekends). So I'll be finished on August 4th. Again, I don't know the side effects, but the doctor has said he'll not start me on any extra medication that I don't need. If there is swelling, I'll likely start on steroids again. Fatigue can be fought with sleeping and napping. Anti-emetics can be used for nausea if the need arises. I'm hoping for no side effects, but we all know how that goes. I got fitted for my mask last Friday and I want to say I handled it pretty well. It keeps your head in place so you can't move it which can be kind of disconcerting. The main problem I have with it is you can feel your blood pulse around your jaw and I instinctively want to swallow.

As far as my other treatment, we're going to go two weeks out from the radiation and do another brain MRI. If the brain looks good, I'll begin a new treatment. Right now it's designated MK-3475, but is also known as pembrolizumab. It's still in a "trial" phase, but it's so close to being approved by the FDA they opened up what is called a expanded access program. An EAP isn't as limited as a clinical trial and they work with patients like me to basically open up the drug to more people. As long as I meet some basic criteria (like the brain is stable), they'll likely start it soon after my birthday in late August. What a gift!

But first, the radiation! I'll try to let you know how it goes, but I may be out of it.

So, what now?

2 weeks post OP. I feel good for the most part. Mainly the steroids are doing a number on me as far as sleeping too little and eating too much. But I'm not in any pain, just need to get back on a regular schedule and slowly start to work my body a bit at a time. I'm also slowly adjusting to laying back down in bed again, as I've been sleeping on my back in a recliner because of the suture.

Post OP - 1 week

Ok, so it's been one week since my surgery. But I'd like to fill you in on the events leading up to that, since they are also important.

I was all set to go in on June 30th. The Monday before that, I had a second seizure (since my first back in May). They held me less than 48 hours and sent me home Weds morning. Increased dosage of anti-seizure meds to tide me over until the surgery and monitoring in case I got worse. I didn't have another seizure, but I could tell something was wrong.

First, my hand on my right side started to lose fine motor control. Not enough to be noticeable right away, but about Thursday it became increasingly noticeable. By Sunday night, I felt like a cripple, forcing me to do everything with my left hand. On the plus side, no significant loss of strength. Also, for the past few months I've felt my speech deterring slowly, and this got increasingly alarming over the week. I spoke way more slowly and slurred (especially when I was frustrated, which over the course of the weekend also became an increasing factor).

Monday was the day. I don't remember too much since they prepped me and had me under the works for the good part of the day. I have an incision from the top of my head to about my ear straight down. I was kept in the ICU overnight and on the floor about an extra day and sent home. It was... amazing how quickly they turned around on me.

So, the results:

• I did another MRI Tuesday night to search for remnants of the tumor. The surgeon said there is "no traces" of a tumor left. Now, this doesn't mean there aren't any there. They might be microscopic cancer cells to small to pick up. But the "big debris" is gone. I'll likely go in for radiation to "dust" for the small cells, but I don't know much until later next week.
• I will also need to at some point have a CT/PET done to re-evaluate the tumors that are left in my body. They'll likely treat the head first since that will be the all or nothing spot for the time being.
• How is my head? Surprisingly well, considering. Obviously the first week there was a lot of pain and swelling, but we've managed it with pain killers and steroids so far. I've been decreasing slowly off the Vicodin and the steroids and should be completely be free of them by next week sometime. The incision is clean and there is no sign of infection.
• My fine motor skills took about a week to completely deteriorate so I wanted to gauge how they'd be after a week. Well, I didn't expect 100% but they are working there way back up. I have a set of therapy exercises I can do to flex and work the muscles back into working "properly". I still notice some deficiencies in typing, pinching and working some of the really fine motor skills. I will actively go in and see a therapist two times a week. But I have no loss of strength as far as grip and squeezing.
• As well, I will have speech therapy to work on my talking again. It's not too noticeably bad, especially if I speaking slowly. But talking fast makes me stutter and slur/skip some words. To the casual listener, it probably won't pick up. To all my friends and family it should be noticeable.
• As well, we will work on my jaw. When I first got out of surgery and the first couple days, I could hardly open my jaw to eat because it ached. Similar to having your wisdom teeth pulled, but not as intense. Since then, I've been able to chew just fine but my jaw hangs up on the left side where they actually did the surgery. The doctor said they the muscles they might have cut into there could have an effect, but whether it's temporary or permanent will yet to be seen.

So yeah, a week after brain surgery I feel better than I had hoped given the circumstances. As I learn more, I'll keep you up to date.

Not again

Many of you have been wondering what is going on. Some of you that follow my blog might have wondered how I made out with my follow up appointment this week for the brain scan.

I'll hit you with the bad news first. As I mentioned in a previous post, an MRI showed a bleed in my brain that was causing seizures. They took me off anti-coagulants and put me on seizure medication to prevent any further bleeding. I'd follow up in a month to see how the bleed was doing. I should note that the first report and scan showed no signs of an underlying mass. But, guess what? My recent scan showed a underlying mass. The bleeding has changed enough to reveal a roughly 1 to 1.5 inch mass. I didn't want to say anything until now because we wanted to get a second opinion but they also agreed with everyone at Emory. This has resulted in the following:

• A brain surgery will be required. This is going to be done Monday June 30th. This is the priority. All else that comes later we don't know yet.
• The surgery is likely to be followed up with some radiation, but we don't know how many treatments until the surgeon says how well he got it.
• I'm off my cancer treatment. Subsequently, I'll be off the clinical trial as well. A spread to the brain means the treatment has likely stopped working and possibly a spread to other organs as well. Since I have not had a CT Scan of my chest since April, we don't know for sure right now. We'll deal with it after the surgery and any needed radiation.

The area of the brain it is in affects my speech, so there is a good chance its been growing for sometime and affected my speech in February while I was in the hospital for my back.

The brain surgery could possibly affect my speech the rest of my life and there is a possibility of a permanent weakness to my right side (facial, arms, and possibly legs).

So, I guess the good news?

• The tumor is superficial, which means it's near the surface. They can remove it without having to dig through brain tissue, thus minimizing any possible risk as well as close to 100% removal.
• Although it is brain surgery, it is minimally invasive. It will only take a couple hours and recovery time in the hospital will be probably about 4 days (plus possible out-patient treatment for PT/OT).
• It is likely the tumor didn't cause my seizures -- more likely the bleeding did. This is good for post-operative care.

Given my history, this is probably the melanoma. There could be a slim chance it is benign, but they simply won't know until they go in. But, there is something to be removed regardless so I'd have to have surgery one way or the other. But where we go from here is anyone's guess.

At this point, I have no expectations.

On the topic of religion

I feel the need to preface this with a BIG disclaimer. As many of you are well aware, I am a non-religious person. I don't believe in a god, I put my faith in science and my fellow human beings, and usually have disdain for people that try to force their thinking down my throat (on both sides of the issue). That said, this blog is about my cancer and my dealings with it. This isn't a religious rant or diatribe so please don't take it that way. I mean no offense to anyone and have had discussions with many people on the subject before. But it has been weighing on my mind more than lately and I'm going to try to finally get it out.

Catching a break

UGH.

So, this post was delayed about four weeks. Originally, it was going to be one of my catch up posts, because I had been out of the rehab clinic for about two months at that point. I was going to tell you how I had been going to outpatient PT three times a week, where they worked the tense muscles out of my back. In fact, I went from using a walker, to using a cane, to walking unassisted in a little less than a month. Coupled with a water walking class I had started at a local wellness center, I had been feeling pretty good. The only mediocre news: at my oncologist appointment, my CT scan showed no change to the size of the tumors. They hadn't shrunk any, but they also didn't grow. They were what they referred to as stable. Not the best news, but they weren't growing. My next appointment should be more definitive if my treatments have stopped working, or if it's the on/off cycle when I was in the hospital of taking my medication.

The Long Road Ahead (pt 5)

At this point, I'd been in the hospital for almost four weeks - a little over one week at Houston Medical and going on three at Emory. For me to be discharged, we had a few things to accomplish. First, I had to be taken off the morphine pump and manage my pain with oral medication. Second, they needed to make sure my oxygen levels were alright without the use of an oxygen tank. Third, a physical therapist needed to evaluate me to make sure I was able to get out of the bed and at least move around (with or without assistance).

The Long Road Ahead (pt 4)

This is taking longer to tell than I thought. I'm going to try to wrap this up in this part or the next, mainly because everything in the hospital after this point is a blur. The combination of pain medication and other drugs I was on, in addition to how much I was trying to sleep and the onset of cabin fever (I was at 3 weeks and I wanted to go home badly), made my memory very spaced out.