Sunday, March 30, 2008

Third Infusion Complete

It went as well as the second one. The only noticeable side effect so far is extreme fatigue for three days. Although the first two days after this infusion weren't too bad, it sure caught up with me yesterday, the third day. Today, I've had more energy. And some of the fatigue could be the effects of tapering off the steroids.

Dr. Keating seemed pleased about the "progress." Personally I don't see much progress. But the big node under my right arm is somewhat smaller and noticeably harder. He convinced me that no new nodes was good (well, duh) and the fact that the node under the arm was hard indicated the disease was probably killed there and the node is just full of fibrous structure. I've learned to take Dr. Keating with a grain of salt because he could sell ice to an eskimo. So selling hope to a cancer patient is something he's good at. But I have an ace in the hole -- his nurse, Alice. Alice doesn't sugar coat her answers to direct questions nor does she hide her reactions. So I glanced at her quickly when he gave me his assessment. And, lo and behold, her countenance showed good news, too. So I bought the story. Done deal. Good news.

Now don't get me wrong. I really like Dr. Keating and I respect his opinion. It's just that he could convince a dying man that he was going to be in good enough shape to go sky diving next week. So it pays to be a little cynical.

My eyes seem to be getting better. I don't know if they really are or the steroid drops and ointment are just relieving the symptoms. At least I can go outside if I'm not in the direct sunlight. The GvHD in all the other areas seems to be gone.

I will start a second cycle of the Sunesis drug next month. A cycle consists of three weekly infusions just like I just had. They give you every fourth week off. They will give you up to six cycles of infusions. I don't know what the longer term effects on the white count are. But it has dropped my white count and neutrophil count, so I have to be careful about being around crowds. Makes me nervous to get on a plane, but I wear my respirator mask and have had no problems yet. Heck I flew all the time in the early years of treatment with no counts and no mask either. So this isn't any different I guess.

On a sad note, my friend, John Slatin, passed away this past week. I met John and his untiring wife, Anna, while John and I were both getting our stem cell transplants in September of 2006.

John was always a great example of strength and courage. He went blind in his early twenties due to a degenerative eye disease. I believe his brother did too at the same age. John went on to get his PhD. from Johns Hopkins and was a professor at the University of Texas when I met him on the transplant floor.

Before we met, he developed CLL which went to his central nervous system and to his brain. He went through chemotherapy, chemotherapy to his nervous system which entailed spinal taps every few months, and radiation treatment to his brain. Then when the CLL came back he turned to a stem cell transplant. My apologies for such a condensed version of a great life.

It looked like he was progressing pretty well for a year or so after the transplant, making frequent trips from Austin to Houston for check ups. But a few months ago he began to have some speech and hearing problems which was traced back to a spot on his brain. His speech and motor skills began to slip while the doctors debated a brain biopsy. In the meantime they put John on various medications and eventually infusions of anti fungal medicines since the medical concensus was that he had an infection and not a recurrence of leukemia in the brain. After a few weeks he was still slipping, so they went ahead with the brain biopsy. It showed damage from his previous radiation treatment despite the fact that he had received half of the exposure that causes these "flashback" problems. But the tissue continued to deteriorate. John got pneumonia and died. If you want to read more about John please go his blog at http://leukemialetters.blogspot.com.

I'll miss him, Anna, and Dillon.

Saturday, March 22, 2008

2nd Infusion Went Well

The second infusion was much less intense than the first as I detailed in the previous post. It was still a long day, though. They started sodium bicarbonate via IV an hour before the infusion of the SNS032 drug. That's the stuff that's suppose to protect the kidneys. It doesn't sound very sophisticated. I guess they just go back to the kitchen and mix it up.

The SNS032 infusion lasts 6 hours and 15 minutes. The first 15 minutes is a heavier dose. Then there's 6 hours of a single dose. There were no side effects.

The whole process took about 9 hours from when we checked into the outpatient clinic. We got there about 1:15 and left at 10:15. Lynda was pretty bored I'm sure, but I slept through a lot of it. As it turns out we were deep enough into the building I couldn't get a cell phone signal for my Verizon air card.

This stuff does make you tired. Here it is Saturday and I could take a nap at any time - even after a very good night's sleep. So far that seems to be the only side affect.

The big node under my right arm seems to have gone down a little. It's still there, but it has not grown, it's less sore, and I belief smaller in size. So maybe this stuff is working. They did say that it would act much slower than previous chemotherapy. So I'm trying to be patient.

My eyes have been hurting since last Sunday. It's GvHD they think. It doesn't seem related to the Sunesis drug. GvHD or previous chemo has affected the function of my tear glands. I can't make any tears, so my eyes dry out very badly. They were already bothering me before Sunday, but something changed and they got dramatically worse. It felt like I got soap in my eyes and I couldn't get it out. I spent all day Sunday with a cold wet compress on my eyes. I went to the eye doctor there at MD Monday and Tuesday. They put me on steroid eye drops and ointment. Plus I have several over the counter products they have me using to keep my eyes moist. This is a real pain - literally and figuratively. Some of the drops and ointments make my eyes blurry, so I can't see well. I'm very sensitive to light also. So sunlight, TV, and computer have been difficult to endure. Today, though, they seem to be better. At least I'm able to get on the computer.

The GvHD started in my feet and worked it's way up through my mouth and is now, I guess, in my eyes. It took a good week for it to resolve in each affected area, so I'm hoping for the same time frame in my eyes. My feet, hands, and mouth are much much better. I would say all that is 99% resolved. The outer layer of skin on my feet is peeling again. My hands have about completed their peeling. My mouth is pretty much back to normal. So now I've got to get my eyes back.

I go back to Houston this week for the third infusion of the Sunesis drug. Then I get a week off. So it's three infusions per month. They will let you have as much as 6 months worth. Exactly how many cycles I get depends on my response.

Saturday, March 15, 2008

SNS032 Infusion Went Well

It was a longer stay in the hospital than I anticipated. The first night was IV hydration. There's nothing to that except that you have to go to the bathroom all night long. The next evening they moved me to another floor where a telemetry room was available. That's when it got a little more complicated. The protocol for the infusion was complicated and the nurses on this particular floor were not familiar with it at all. So everyone proceeded carefully to make sure they got it right.

This drug is similar chemically to another drug, flavopuridol, which causes kidney problems. So, the protocol was written to monitor kidney function closely. Once the infusion started, blood tests were done hourly for about 8 hours. An IV was put in the my right arm just for drawing blood. Another IV was put in the left arm to infuse another drug to protect the kidneys. Then the SNS032 was infused through the central line in my chest. Then there were the lines hooked up to my chest to monitor heart activity constantly. So I was hooked up pretty well; Lynda got pictures. We got started with the infusion around 8:00 p.m. The hourly blood draws and vital signs took place until 4 am the next morning.

Oh. I almost forgot about the multiple EKG's. There were about four or five of those along the way as well.

Then I had to stay another day for less frequent blood draws and monitoring and the ongoing infusion of the stuff that protects the kidneys. So I had a longer stay than anticipated. All of this was right off the orders, but I just hadn't seen the orders until I got in the hospital. I always get a copy of the orders so I can double check that the nurses are doing what they are suppose to do.

I spent most of yesterday, Friday, trying to catch up on my sleep. I had no sleep to speak of for two nights. So I was dog tired.

I'll get three weekly infusions of SNS032. But the hospitalization only applies to the first infusion. Subsequent infusions can be done as an outpatient. They are not worried about the kidneys if you have no problems with the first infusion. As it turns out, they have had no kidney problems with anybody. But the protocol was written as it was and won't be changed.

So far there is no change in the size of the node under my right arm, which is the biggest one evident to me. This stuff doesn't work as quickly as Hyper CVAD. They anticipate some response after the second infusion. So I won't know much about the results for a while. I have no noticeable side effects so far.

Wednesday, March 12, 2008

Back in Houston

I'm in a hospital room waiting for a telemetry room to become available. The telemetry room is where the Sunesis drug will be infused. Due to possible side effects, of which they have had none to date, they infuse the drug while you are constantly monitored. That is telemetry, automatic and constant monitoring. The infusion will last 6 hours and 15 minutes plus set up time and disconnect time. So that is probably an 8 hour process. Subsequent infusions don't have to be monitored like this, just the very first one. It's 11:45 a.m. now so it looks like this is still going to be a very long day.

The GvHD cleared up last week, although there is still a little here and a little there. But I can keep that under control with the Tacro pills and the steroid cream and mouth rinse. The GvHD flared up after the chemotherapy a few weeks ago. They warned me that might happen. I wonder if it will try to flare up after the Sunesis drug infusion. Nobody really knows.

I'll post more tomorrow after we see how the infusion goes.

Sunday, March 02, 2008

Rough First Week Home

But things are improving. GvHD and fatigue have been the main culprits.

The GvHD on the feet is much much better. My hands turned red, blistered, and are now peeling. Although tender, they at least don't hurt. My mouth is better, too. I'm finally able to eat some solid food, but I lost 7 pounds in a week. Talk about a diet.

I am tapering off the oral steroids. I'm on Medrol right now at 24 mg per day. If the GvHD continues to improve I'll taper down to 16 mg in a couple of days. Then we'll maintain at 16 mg per day until I see Hosing next.

The steroids help control GvHD along with Tacrolimus. If you come off oral steroids cold turkey, you can get a sudden flare up of GvHD, which is what happened after chemo a couple weeks ago. You can't adjust the Tacro blood stream levels very precisely, so steroids are the tool to use for immediate relief. Unfortunately, like everything else, steroids have their nasty down side, too. So I would like to get off them completely soon.

It sure is nice to be home for awhile.