Cycle #1, Days 8-17

I've not received any chemotherapy over the last week (nor will I until April 2nd, when Cycle #2 starts). A brief update on what's been going on:

I received steroids (dexamethasone) for three days during my last infusions one week ago. Frankly, these made me feel really, really good. I had plenty of energy, no nausea, and no aches or pains. Unfortunately, long-term steroids are bad for you, so I was off of these by Saturday.

Over the weekend, I definitely started to feel worse: more tired, more muscle aches, and also - interestingly - change in taste (dysgeusia). I currently do not taste sweet or sour very well. Sadly, both coffee and wine are really unpleasant! As an aside, the whole 'tongue taste map' thing that you learned in elementary school - not true.

I also had a fever on Sunday and Monday (to 100.6 F). This, in and of itself, is not a problem (I wasn't feeling all that poorly). But, fever can be a sign of infection. If you have a bacterial infection and, at the same time, a weakened immune system (more specifically, if the number of bacteria-fighting white blood cells - neutrophils - are low) then bacterial infections can be very dangerous.

So, because of the fever, I had to go to the chemotherapy infusion center on Monday to have my blood counts checked. Fortunately, my neutrophil count was very high (it was 3000 cells/microliter - you have to be below 500 to count as 'neutropenic'). So, nothing terrible to worry about. I'm getting Neulasta injections (a white blood cell stimulant) with every chemotherapy cycle to minimize neutropenia and infection risk.

As the fevers were accompanied by general achiness and happened shortly after my chemotherapy infusions, they were likely just a side effect of the chemotherapy. Unfortunately, this may happen with every cycle. We'll just have to follow, figure out what is part of the 'usual' pattern, and watch out for the unusual.

By Thursday morning (day #15), I felt definitively better. I still get tired a bit more easily, but I generally feel well. We'll hope to keep this up until I start all over again next Thursday (April 2nd)!

As always, thanks for your prayers and support,
Robert and Gwyneth

2nd Infusion of Cylce #1 is done

Yesterday, I received my second set of infusions (still part of chemotherapy cycle #1).

Each cycle is 21 days long; the first infusions were on day #1 (last Thursday) and the second set were one week later on day #8 (this Thursday). No treatment happens for the next 13 days until the next cycle begins (after a grand total of 21 days).

So far, I've tolerated the day #8 infusions very well (I received gemcitabine and Taxotere). I've only had some very mild, manageable nausea.

I have been on a steroid, dexamethasone, for three days now. Some patients will have an allergic reaction to Taxotere; the steroids help to prevent this (I had only some mild cheek flushing). Also, steroids are good for preventing nausea. I'm not bouncing off the walls or anything, but thanks to the steroids, I'm certainly not fatigued yet! I come off the steroids today and my blood counts will be down next week, so I'll likley have more fatigue soon.

Thanks again for your continuing prayers and support!
Robert and Gwyneth

No problems with my first infusion

I had my first chemotherapy infusion yesterday and - overall - it was entirely underwhelming.

Gwyneth and I arrived at the chemotherapy infusion area at 9:00. We had a 30 minute orientation session and then were taken back to my nursing area. Recently renovated, the infusion center is actually quite comfortable. There are several nursing areas, each with a half-dozen chairs, recliners, and window seats - you can choose whichever you're most comfortable with. You can eat, read, do work, or watch television (each seat has it's own video setup) and a snack cart comes by twice each day.

I had an IV placed, my vital signs were taken, I received an IV injection of Anzemet (to prevent nausea), and then my gemcitabine chemotherapy infusion was started. The infusion ran over 90 minutes, during which time I did some email, talked with Gwyneth, and ate. At 12:30, when the infusion was complete, my IV was removed and I was free to go. Very little fuss.

I went back to work for a few hours in the afternoon, then we picked up William from daycare and went out for dinner with some of my co-residents. I've had no nausea and only a very little achiness with a mild headache. Today, I feel completely fine (really).

Next week, I'll have my blood counts checked on Wednesday and chemotherapy on Thursday (gemcitabine, like this week, as well as Taxotere). Unlike this week, Gwyneth will go to work during my infusions, but she'll be able to come by and check on me periodically. Oh, the perks of both working and being treated at the same hospital!!

Robert and Gwyneth

Chemotherapy starts on Thursday

After some discussion with the sarcoma groups here at Hopkins and at Dana-Farber, we'll be starting my chemotherapy on Thursday (March 12). I'll be getting two agents: gemcitabine (Gemzar) and docetaxol (Taxotere).

Unlike last time, I'll be able to get these drugs as an outpatient (as both can be given as hour-long, rather than multi-day, infusions). So, I'll spend about half a day on Thursday in our outpatient infusion center while I get my chemotherapy. Next Thursday (week 2), I'll do the same thing. Week 3 is off, and then we start over the following week (i.e., a three week cycle).

Another plus: I won't need a central venous catheter this time (i.e., no Hickman catheter or portacath). Although I will need peripheral IVs for each chemotherapy session, they'll be removed when I leave, I'll have no permanent tube hanging out of me, and I'll generally feel more normal.

Although it's hard to know for sure, we do expect that I'll tolerate the chemotherapy side effects well. Most say that side effects from these agents are milder than those from last year's chemotherapy. Certainly, I will have some fatigue and nausea, but we trust that everything will be manageable. Also, just in time for summer, I'll once again have the fashionable bald look.

As always, thank you for your support and prayers!
Robert and Gwyneth

Lung biopsies

My lung biopsies went very smoothly last week, I was only in the hospital one night, and I'm already feeling quite well. Gwyneth, William, and I were able to drive back to Baltimore last Saturday.

Unfortunately, the lung biopsies did show metastatic cancer. While we're still working out the details, I almost certainly will receive more chemotherapy. Most likely, I'll have infusions every three weeks for about three to five months. I'll also have periodic chest CT scans to monitor what's happening to the tumor nodules during treatment. Or course, depending on what the imaging shows, the plan could change. We expect that all of this can be done in Baltimore.

Obviously, this is very difficult news. We hope to have a plan in place within the next week so that we can get started.

As always, we're very thankful for your support and prayers,

Robert and Gwyneth