Hey, things are getting a little better. Today I took my second dose of the Temodar. No vomiting whatsoever. Among anti-nausea drugs, Zofran's the best. As we go through time, the chance of nausea or vomiting from Temodar drops off dramatically, so hopefully I'm in the clear. Yesterday was almost routine. One curiosity is that this past Friday, April 30, my weight was 159.5. Yesterday, it was 172 pounds. Yeah, I've been making a concerted effort to gain weight, but this is ridiculous. It turns out that I'm retaining a lot of water, specifically in my right thigh (the one with the big tumor on top) and in my midsection. Yesterday afternoon, after the regularly scheduled program, they performed an ultrasound of my right thigh. This was to check whether there were any blood clots. I haven't heard back, so it's probably just a lot of fluid. What happened was that the tumor in the lymph nodes of my right groin grew and grew, and eventually choked off the lymph nodes; this caused lymphatic fluid to build up in the thigh. It's basically lymphodema, but without the surgery (this is when lymphodema usually occurs). My doctor was also not too surprised or concerned to see water retention in my abdomen. I've got so much disease in there that lots of little pockets and cavities are available for fluid to build up in. And so it builds up. If it gets a lot worse, they could start removing some of the fluid with needles. But hopefully, we won't have to do that. We did receive a hint of not so good news. Results from stool samples indicated that there is some blood in my bowel movements. Very little -- not enough for me to tell on my own -- but it's there. Again, my doctor is not surprised or overly concerned about this. With all the tumor in my bowel/colon area, it's not surprising that some disease should penetrate the walls of the colon and cause a little internal bleeding. What it will lead to in practical terms is more blood transfusions for yours truly, which I actually enjoy; you feel a noticeable boost of energy and strength after a couple of units of the good stuff. I think I'm supposed to get some more blood next Tuesday.
My temperature has stayed down, glory be, so it appears that I am infection free, and the anti-inflammatory drug that I'm now on seems to be able to deal with these tumor fevers. It's much easier for me to move around the house now. When I had a significant fever, I'd start breathing hard and my pulse would shoot up after very little physical exertion.
My next assignment is for this coming Friday: I will go in for another (fourth) injection of the experimental drug. Next week, we take a break from the experimental drug and just take the Temodar.
This past Friday's treatment was supposed to have been straightforward. Instead, I had a fever of 101.6. That was enough to put everything on hold; blood tests were done, my doctor was called, etc. Meanwhile, the fever goes down and I'm finally able to get my treatment and go home -- after seven hours. The mysterious fever elicited an ultrasound of my right neck area -- the most probably location for infection. That was done this morning. But yesterday evening, I had a fever of 103.1. High. This morning it was at 103.7. Damn high. So we went directly from the ultrasound, which was at 7:30 a.m., to the emergency room (per doctor's instructions). There, I got some fluids, more blood tests were done, and the fever subsided. Thankfully, my doctor let me go home rather than admit me into the hospital for a couple of days. The ultrasound results did not indicate any sign of infection in my right neck. So my doctor concluded that these sporadic fevers are most likely resulting from tumors rather than an infection. Fever from infection is dangerous in the very short term, whereas fever from the disease is a controllable nuisance. Just in case, I'll be on antibiotics for another week or so.
Hopefully, tomorrow will go as planned: doctor's appointment in the morning followed by my third dose of the experimental drug and my first dose of Temodar. It's important to start the Temodar. This is what actually kills the cancer cells. Tomorrow, if in fact I do get the dose, will mark the first day of whatever benefits I will get from this trial.
Busy, busy, busy... I met with my doctor this morning. The MRI of the brain was all clear. This is rather astounding, given that the brain is, unfortunately, one of the more common places for melanoma to spread. The radiologists had not gotten around to analyzing my CT scans until this morning, so my doctor was only able to give me a vague report. Everything was a lot worse, just as expected, and I could have told you that by looking in the mirror. I don't really have much interest in learning more about the gory details, so I won't follow up with him about it. The next set of scans will be far more important. These just established the baseline for the trial.
After a couple of hours of pointless hospital waiting, we were led over to a different part of VUMC where the experimental drug was to be administered. The infusion took 5 seconds. The bulk of the time, one hour, is spent, post infusion, getting your vital signs checked to make sure nothings going out of whack. Since today was my first infusion, it took us about three hours from start to finish. Normally it should take two. [The extra hour is because of a stupid hospital regulation that prohibits the hospital pharmacy from mixing the patient's drug until said patient has arrived and been seen to look 'okay' by a nurse. Or something like that.]
We will repeat this on Friday and I start the Temodar (a chemotherapy drug) next week. The drug I got today is supposed to make the melanoma cells more vulnerable to the Temodar. Possible side effects: rash, diarrhea, fatigue, neuropathy (numbness in the extremities).
Well, my connections with the previous trial are completely severed, personally and financially. The head nurse from Philadelphia called to see how I was doing and wish me luck. They will 'continue to follow my case through my doctor at Vanderbilt' (who is a colleague of my previous doctor in Philadelphia), to paraphrase her words. Like I said, the people up at the University of Pennsylvania were great to work with--very professional--despite what had to be a heavy patient load.
I also liquidated my Onyx stock. Around midday I checked the ol' stock quote and noticed that it was up 16.5%. I don't have to see that twice. The culprit was some good news with a related biotech stock which spiked the whole sector. So I'm out with a 140% profit on my investment from September of 2003, and left with a result that I did not expect: I thought that there would be a strong positive correlation between my health and the stock price. As it happened, when my health started failing the stock price started rising. I guess there's never a sure thing in investing.
We ran into a small surprise when the lab results from Monday showed low hemoglobin, red blood counts, and platelets. More labs yesterday confirmed those results, and today I received two units of blood. I'm not sure if there is a critical value above which the hemoglobin has to be for us to start the trial, but with a value of 7.8 (the normal range is 14-18), my hemoglobin is very low. The platelets were at 63,000. The biopsy yesterday was routine. As I expected, the tumor in my lower back was too big for resection. They just did a 'core' biopsy, taking several little chunks out of it. And, finally, my screening week is done.
The transfusion should help me feel a little bit better. Along with everything else, I haven't had much energy at all. Last night, feeling terrible, I went back up to 45 mgs of morphine before going to sleep. I was rewarded with one of the best nights of sleep I've had in a while; there were many deep, satisfying dreams. It's almost worth living just to leave open the possibility of having dreams like this.
I'm smack in the middle of my 'screening' week. On Monday they did labwork, an EKG, and a chest x-ray. This afternoon they will do CT scans and an MRI of the brain. And, finally, tomorrow morning will be the biopsy. The port was 'accessed' for the first time on Monday. The process is slightly more involved than I had expected, but overall, it was far easier than trying to go through one of my battered veins. I asked the highly competent nurse whether she thought they could use the port for the contrast during CT scans. Unfortunately, she said that's unlikely. I'll find out for sure this afternoon.
Last week I noted that we were going to increase the morphine from 15 mgs to 45 mgs. Well, I tried that for a few days, and then decided to back it off to 30 mgs. This has worked better. The fatigue this past Saturday--from the morphine, I suspect--was really paralyzing. I've also been able to get by on only two Percocet at night to help with sleep.
The tumors haven't grown outrageously in the past week. The most noticeable growth is definitely with the large, ablated tumor on the right side of my neck and face. If I cup my hand around it, it's as if I'm holding a grapefruit. It extends from the middle of my right ear to midway down my neck, and is about the same dimension across. Amazingly, I haven't had much pain. A good portion of the area is numb, most likely as a result of the ablation. One interesting development, however, is that the skin directly under my chin, kind of underneath the center of my jaw, has gone numb. I suspect that some disease in the neck somewhere has taken out a nerve. Fine with me; numbness is better than pain, I guess. But it's still strange.
The doctor's appointment that was supposed to happen yesterday was rescheduled for today. My doctor decided to increase the MS Contin (morphine) dose to 45 mg from 15 mg. This should translate into better sleep tonight and hopefully enable me to back off the Percocet. The rest of the appointment time was spent discussing the new trial with the nurse in charge. Next week, I'll have CT scans done as well as the rare and always exciting MRI of the brain. My last MRI of the brain (an all clear) was last August. Even if they were to find a brain tumor, I don't think our course of action would change; but let's not think about that unless we have to. Sometime next week, they'll also take a biopsy of some tumor from somewhere. No dearth of tumor to choose from. My doctor wants to use the biopsy as an excuse/opportunity to have the surgeon do a full resection of a particular tumor in my lower back that is both easily resectable and quite annoying. He will leave it up to the surgeon. I'm all for it, but I have a feeling that the surgeon will think that the tumor is too big to remove altogether.
So, with all this pre-trial stuff to get through, the starting date for the actual beginning is now, tentatively, Tuesday, April 27. Wow. Almost two more weeks to go without any anti-cancer anything. The trial itself goes in nine-week cycles. My doctor admitted that these were rather long for my particular case, but believed that we should have a decent idea after 4-6 weeks whether or not the trial is working.