Background

I've taken the time to write this because I was diagnosed with a really rare form of cancer in March '08 and there is very little information about it posted anywhere. Many doctor's haven't even heard of it. This is written specifically for anyone else out there that has it and is looking for some type of reference. Although this is petty much a bummer - it hasn't been all that bad. All in all, if you are going to get cancer, I think most other types are far worse.

I couldn't figure out how to make the photos go in the correct order so you will need to start at the bottom if you want to start at the beginning. The post directly below is the most recent.

Facebook Group

I really haven't looked into this lately because I consider my treatment pretty much done except for some needed reconstructive surgery. However, I was looking today and found a really good Facebook Support Group page for those inclined. It's a pretty good feeling to see that there are others in the same situation - as sorry as it is...

You will probably have to be logged into Facebook before you can view the link.

http://www.facebook.com/groups/dfspsupport

Another one:
http://www.facebook.com/groups/26592523481

Updated photo

This has been almost a year since the last time I took a photo of my scalp. The area is pretty much 100% healed up except I'll occasionally get small sores like you can see above. I think they are probably resulting from me bumping my head and not feeling it since there sense of touch back there. I also suspect the skin isn't as tough as normal. All in all, it seems pretty good to me. I really don't notice it much and my hair is long enough that nobody can see it.

Off the Meds

Okay, so now that I'm off the Gleevec, I'm begining to feel quite a bit better. I certainly don't feel 100% but I am not nearly as run down as I have been while taking me medicine. After being off it about a month or so, I'd say I'm feeling about 85%. I never feel great but I don't feel terrible either. Hard to explain...

Gleevec Side Effects

After taking Gleevec for about a month, I can say for sure that the only side effect that I have from it is pure exhaustion. It makes me incredibly tired all of the time. So much so, that I now find myself wanting to nod off at work and falling asleep very early in the evenings.

It makes me feel as though I'm running at about 70% every day. If 100% is feeling like normal, good day.

Drug Treatment

Gleevec (Imatinib)

So after visiting with my oncologist on a recent office visit, he decided that I was a suitable candidate for a courcse of Gleevec teatment. Apparently, if you have had a recurrence like I did, they feel that it is justified and will prescribe it.

I can see why they hold off because its about $3,600 a month for the drug from the pharmacy at the hospital I go to. That buys you one pill a day. From everything I've read, it seems to be well worth it.

healing up pretty well...

Self-Portrait

I finally had another surgery yesterday. So far, it has turned out to be pretty minor compared to everything else I've had done. I now have 2 small sponges sewn onto the back of my head that are about the size of a 50 cent piece and about 4 small holes from biopsies. It was just a day surgey so I'm pretty much back on my feet now and will have the sponges taken off next week. After that, I should have the pathology reports to know if they got it all and what is next. Hopefully, the spots will just heal up and that's it.

Not so Happy Thanksgiving

Well, no new pictures yet but I have an update. On my visit to the dermatologist last week, she noticed a couple pink spots on my skin graft so we did 2 punch biopsies. Long story short is that the cancer has returned and both biopsies were positive. So, now I will be visiting with a surgical oncologist next week so that we can figure out if he needs to do the surgery or if my other surgeon should go at it again.

$$$ Big Spender

As it turns out, cancer is pretty expensive. I don't recommend it to anyone. I haven't added it all up but I put most of it together from my insurance website and to date, I'm almost exactly at $100,000 in bills give or take a couple thousand. In a few months I'll have a couple plastic surgery procedures and I'm sure I'll have some MRIs, CT Scans, etc... I'm going to go ahead and guess about 140k worth this year. Add to that, several months of missed income. Pity I couldn't go to China for treatment and spend the savings on a Maserati.

Even with insurance, this ordeal is pretty devastating financially...

Pretty much all healed up and waiting on phase II which will include some skin expanders and a couple procedures to stretch my existing (with hair) scalp down over the bald spot. Most likely sometime in November or December.

The skin graft is pretty crazy. If feels like stretched out silly putty.

At this point, I felt pretty much healed. It's pretty miraculous how it went from looking terrible to looking like skin. Its difficult to describe how great it felt to have the back o my head look like this.

The white spots are Silver Nitrate (I think) that is used to kill the tissue that is growing through the graft. By knocking it back, the skin can close over it (in theory). Turns out it worked just like they said though.

Today is also my first day back to work fulltime. I worked for about 10 days or so before my skin graft but as of today, its back to work for real... pity.

Pretty gross.

The skin looked a lot better on my ass than it does here on the back of my head. The doctor thought it looked great but I think he was just trying to seem positive and optimistic in front of me.

After the fact, I think he fully expected this not to work completely and for me to need a full flap procedure to finish closing the wound. There is about a 50 cent size spot in the middle where there is bare skull that the skin didn't have a good chance of sticking to. Luckily, thanks to the wound vac and the Integra skin substitute, it all came together and worked like he'd hoped.

Still hurts... It hurt for about a week exactly. After that, it just felt pretty tender for a couple of weeks.

I didn't get much sun this summer.

This was without a doubt, the most painful part of the whole ordeal. Skin grafts hurt.

After my last surgery my throat hurt pretty bad. I thought they'd scratched it with my breathing tube but as it turns out, all my antibiotics caused me to get some crazy yeast infection in my throat. This is after it was almost healed up. My tonsils and uvula were solid white at one point. It felt like my throat was scratched and hurt to swallow.

This is the first time I could take a shower and wash my hair. The wound vac bandage is waterproof so I could finally take a decent shower. I think thats about a months worth of normal hair falling out.

It seems to be getting dangerously close to my ear...

Vound VAC

KCI V.A.C. Therapy

$134.00 a day (+supplies)

I pretty much wore this 24/7 for over a month. Only time it came off was to change the bandage 3 times a week.

Even though I absolutely hated it, I think this little machine is pretty ingenious. I believe a huge part of my successful recovery is due to this.

As if cancer isn't depressing enough, now I'm attached to a Hoover.

Thats a black sponge under the clear sticky bandage. They also shaved off any chance I had at a comb-over.

Home cooking at the hospital. Pretty good food believe it or not.

Zale Lipshy Hospital

Race Day!!!

Pretty good this thing wasn't on my face.

My daily dressing change.

I've ruined several pillows now.

This is after I woke of from another surgery. I wasn't feeling too great. Sort of like a terrible hangover.

cancer patient...

Not really what I was expecting...

This was two days after the surgery at my follow up visit with the surgeon. The red stuff is some artificial skin substitute used mostly for severe burn victims. For me, its a temporary covering until they can finish removing the tumor and eventually close the wound with a skin graft.

The stuff feels like plastic and looks like a fruit roll-up. Its held on there with about 100 or so staples. Doesn't hurt a bit. I certainly didn't feel good, but its not painful.

My Plastic Surgeon

James Thornton, MD

Dr. Thornton is my plastic surgeon and has done pretty much everything for me. It was beyond the scope of what they could do in the dermatology clinic so Dr. Thornton has done everything else and will be doing some more to repair my scalp and fix my hair. He's great. A no nonsense, dad's an astronaut type of guy. Highly recommended. I'm sure he does a great boob job too.

Everything on here is from Dr. Thornton.

Photos courtesy of iPhone.

Notice the added bracelets. This is before my surgery with Dr. Thornton. I didn't even have to stay the night. They cut it out, through a bandage on it and sent me on my way. Pretty damn amazing. The subsequent surgeries were a slightly bigger ordeal. I think this one caught them off gaurd.

This is in the MOHS Surgical Dermatology Clinic at UT Southwestern before everything snowballed. They were hoping for a minor outpatient surgery to remove it but that didn't pan out. At this point they'd already cut out a pretty big chunk.

They'd remove some, then test it while I waited. Then remove more and repeat. This went on pretty much all day before they gave up and sent me to surgery and had my plastic surgeon finish up the excision and close the wound.

Gleevec Trial or not???

Gleevec

Why I opted not to enter a drug trial at MD Anderson for prophylactic Gleevec treatment...

My Dermatologist

Dr. Sarah Weitzul

Dr. Weitzul is the first person I talked to who I actually felt knew what she was talking about concerning my cancer. Its super-rare and it seemed anyone else I talked to had never even seen a case or maybe just one or two in their entire career. Dr. Weitzul is the reason I didn't convince myself to visit someone at MD Anderson in Houston. She's a MOHS expert and did my first surgery. Unfortunately, it ended up being too large of a tumor for her to remove during the MOHS procedure and I had to have Dr. Thornton finish it up later that day in the operating room. I think I'll be vising Dr. Weitzul every 3 months or so for the next 5 years (at least) from what I gather.

Here is some info on MOHS surgery for DFSP.

And some more info.

My Oncologist

Dr. Robert Mennell

Dr. Mennell is the Associate Director of Medical Oncology at Baylor. He was recommended by a friend that worked at Baylor and is a super-nice guy and very well respected at Baylor. I'll be seeing him every few months for the next 5 years or so as well.

My Biopsy

Dermatofibrosarcoma protuberans (DFSP)

Whoever heard of that? Even my doctor hadn't heard of it before. Needless to say, I was not expecting anything like this considering that I originally thought it was a big zit.

How it all started

My name in Jimmy Singer and I live in Dallas. Several years ago, I noticed a painful bump on the back of my head. I immediately assumed it was a zit/boil or something like that and picked at it a bit. It did nothing but hurt more and seemed to get bigger over a couple of day. A few days later, I was pushing on it and it seemed as though it popped but nothing came out, it's as though it exploded under my skin. It soon completely went away.

Fast forward about 6 months and it came back again. The exact same scenario... it came back, I fought through the pain and it popped again (under the skin). This happened a few more times over about a three year period. I even went to the doctor for it one time but by the time my appointment came up, I'd already popped it and they said they couldn't do anything about it. I was convinced it was a sebaceous cyst and was wanting to have it removed.

When it came back the last time, I noticed it had grown, or spread rather. Now, instead of one bump, there were two of them. I could even push on them under my skin and make them move around a bit. They were never painful before until they got pretty big. This time, I finally made an appointment and went to the doctor to have the cyst removed.

He punched a hole in it and like me, was expecting it to pop but it didn't. He cut out a piece and sent it out to the lab for analysis. That begins this story...