Cycle #2

For cycle #2, I was an inpatient at Hopkins for six days starting on Wednesday, April 16. Unfortunately, the oncology center has been very full, so we were left waiting for much of Wednesday to see if I'd actually get a room. Gwyneth's chief resident arranged a happy hour at the Pickled Parrot for her pediatrics program. What better place to wait for chemotherapy? Amy's baby was kind enough to sport the same haircut as me (a much more charitable child than William).


Fortunately, we got a call around 6:30 and were admitted an hour later. My chemotherapy started at midnight. After my antinausea premedications, I received sequentially one hour infusions of etoposide and ifosfamide.

In aggregate, this was a more difficult cycle than my first for several reasons. First, the etoposide seems to be more emetogenic (i.e., makes me more nauseous) than my other agents. I was definitely queasy on two of my hospital days and took a few prn (i.e., as needed) antinausea medicines. I was always willing and able to eat and things never got messy, but it made my stay less pleasant. Second, the ifosfamide can be toxic to my bladder if it sits around for too long. So, along with my chemotherapy, I got lots of intravenous fluids. From midnight to 5:00 AM I received 2 liters of fluid, and then I got another 3 liters over the rest of the day. To simulate the problem, try chugging a 2-liter bottle of soda before you go to bed and see how much sleep you get. Then, repeat this for 5 days straight. No fun. Third, simply staying in the hospital for six days (even without the chemotherapy) is unpleasant. Understand that I have a wonderful hospital, a modern and immaculate inpatient unit, a private room and bathroom, and wonderful nurses and doctors. Nevertheless, after six days, I was very ready to leave.

My first two days home were notable for some residual nausea, achiness, and fatigue. I was able to work half days, but slept a lot more than usual. By Thursday, I was able to work all day and when I woke up Friday morning (day #11), I felt like a new man. The change was remarkable; I hope this keeps up on subsequent cycles!

Unfortunately, I had a minor complication that came to light on Thursday. Over the last few weeks, the veins in might right arm, chest, and neck have become a bit more prominent. Nothing dramatic or sudden, but by Thursday, it was definitely there (and I had some pain in my shoulder as well). Given where my Hickman catheter is, this raised concern for a possible venous blood flow obstruction. So, I had a CT-venogram (a CAT scan with intravenous contrast) which suggested that I may have some thrombus (i.e., small blood clots) that are building up around the catheter. Given my symptoms and the imaging findings, I was started on a blood thinner shot (Lovenox) which I take at home twice a day (similar to a flu shot injection). Hopefully, this will improve my symptoms. If it does, I'll transition to a blood thinner pill and keep my Hickman. If it doesn't, we may need to remove the line (and eventually put a new one in). Bottom line, while this is all a nuisance, it's unlikely to become a dangerous issue.

Each spring, we make a visit to Sherwood Gardens, a community garden in north Baltimore. They have beautiful tulip beds, but they don't last long, so you're timing has to be good. Fortunately, we made it up for a visit on Thursday and got the requisite baby photos for 2008 (see 2007 and 2006):

Alopecia

Last Thursday, my hair started coming out. This gradually progressed over the weekend and I had noticeable thinning by Sunday.

On Monday, Gwyneth and I made an appointment at the "Image Recovery Center" in the Hopkins oncology center for a complementary head shaving (one of the cancer perks!) where I went from this:








via this:












to this:

Good thing bald is in style these days. I've been told that I have a nicely shaped head.

William didn't seem to mind; after staring for a bit, he remarked, "Daddy has a funny haircut!" Such attitude from a two year old...

My First Cycle

My first cycle of chemotherapy was from March 26 until April 15. Although this was a 21 day cycle, I only actually received chemotherapy on the first 3 days.

What was done to me...
On day #1, prior to starting my chemotherapy, I was seen by Interventional Radiology who placed a Hickman catheter in the right side of my chest. This provides secure venous access to give chemotherapy and take blood for testing (and saves me from getting stuck for blood draws and IVs!). After this was placed, I was admitted to the oncology center; my chemotherapy started around 10:00 at night.

On my odd numbered cycles, I receive vincristine, cytoxan, and adriamycin. The vincristine was a simple IV push (only takes a few seconds), the cytoxan went in over 1 hour, and the adriamycin was a 48 hour infusion (the 2 day adriamycin infusion is why I had to stay in the hospital for my treatment). In addition to this chemotherapy, I also received anzemet and prednisone to reduce nausea plus mesna and LOTS of intravenous fluids to flush the chemotherapy out of my bladder.

...and how it made me feel
This was not terribly difficult; I never vomitted and was nauseous on few occasions. The most noticable side effect was fatigue. During my hospitalization, I wasn't sleeping very well (frequently woken up for vital signs, infusions, and trips to the bathroom due to all those fluids). The fatigue was a bit worse once I returned home (days #4-9). However, with a nap in the afternoon, I was able to work 1/2 to 3/4 days.

Once day #10 arrived, I felt terrific and was back at work full time. However, over the next few days, my immune system was suppressed. This doesn't cause any noticeable symptoms for me, but if I develop an infection (in particular, a bacterial infection) I could become quite sick and would need to be admitted to the hospital. So, I have to take extra care during this time (including wearing a mask if I'm in large gatherings, extra hand washing, etc.). However, I certainly can have visitors (assuming they're not obviously sick) and go to work during this period. As I get further into my treatment, my blood count suppression will be more severe and last longer, which will cause some increased fatigue and infection risk. However, we're doing great so far and plan to keep it that way!
Robert

First Post

I'm 3 weeks into my treatment and, thanks to all of the support that we've received, I've been doing quite well. As this is our first post, I'll provide a brief summary of my diagnosis and treatment plan:

Starting around December 2007, I noticed a small lump in the skin over my left hip. Initially, we thought this was either a dermatofibroma (a very benign, fibrous skin tumor - I've had several in the past) or a pimple. However, when it became clear that it was enlarging, I made an appointment with dermatology who then referred me to surgery for a biopsy.

Unfortunately, my biopsy came back as a small round blue cell sarcoma. This is part of a family of tumors that includes Ewings Sarcoma and, compared to other cancers, is quite rare. As it's more common in children than in adults, much of the research and experience with treating this cancer comes from pediatric oncology.

Following my diagnosis, I had an MRI of the primary tumor, which showed that it involved the skin and fat, but did not the underlying muscle (good news). Also, as this sarcoma can spread distantly, I had a CT of the lungs, a whole-body PET/CT, and an MRI of the spine and pelvis. All of these studies showed no evidence of distant cancer (also good news).

Nevertheless, it's possible that there is microscopic disease outside of my tumor (i.e., a small number of cells not visible on imaging). So, chemotherapy is an essential part of my treatment. Every 3 weeks, I'll be getting 3-5 days of chemotherapy. After 4 of these cycles (12 weeks), I'll have surgery to remove my tumor. My surgical oncologist will remove the tumor, some surrounding skin, the underlying fat, and a small amount of muscle; a plastic surgeon will then rearrange some skin flaps to cover and reconstruct the area. After healing from this, I'll continue with chemotherapy cycles, every 3 weeks, for a total of one year. As some of my chemotherapy has to be given as a continuous infusions, I will be an inpatient at Hopkins for many of my cycles.

Day 1 of my first cycle was Wednesday, March 26 (I was inpatient for 4 days). My next cycle will begin this week (I'll be inpatient for 5 days this time). I'll post a summary of my first cycle in the next few days.

We're so grateful for all of the well wishes, support (lots of food!), and prayers that we've received so far. It's been quite overwhelming, but certainly wonderful.
Robert, Gwyneth, and William