Day 83

I'm in the clinic about to get my fourth big bag of Rituxan in as many weeks. It's 1:30 now and I won't be done until about 8:00 tonight. The nurse just started the Benadryl pre-med, so I'll be out like a light shortly.

Blood counts are all looking pretty good. Although we are pretty much over worrying about the white and red counts, we still look at the various other things like the liver enzymes, creatnine, etc.

I don't have the Tacro level back yet for today, but it was at 4.9 on Monday. Dr. Hosing said she would like to increase the Tacro dosage to maintain the level in the blood stream at around 7. As I taper off the Medrol we'll have to increase the Tacro dosage to offset not having Medrol to fight the GvHD.

As you may recall, Dr. Hosing reduced the Tacro level about a month ago in order to actually induce GvHD to make sure the graft was working. The idea is that if you have GvHD, you would also have GvL, graft vs. leukemia. Getting the graft to attack the leukemia, the GvL effect, is the point of the transplant.

Once we proved I could get a healthy case of GvHD, then we had to stop the GvHD in it's tracks with Medrol and increase the Tacro level up to a point where I don't get GvHD. I said "a healthy case of GvHD" but that is actually a misnomer. GvHD can kill you very very quickly. It's much deadlier than the leukemia short term wise. That is why they monitor you so closely and keep you in Houston for so long. They have to make sure that you are stable before you can go home. But what you gain in physical stability you may be losing in mental stability.

They reduced the Medrol dosage today down to 48mg per day. They will reduce it every five days providing I don't have any problems. Medrol really saps your strength and weakens your muscles, especially in the legs. So I work out 4 or 5 times a week in the fitness room at the hotel. Most days I don't really feel like excercising, but I have to make myself do it.

The nodes are still down, not completely gone, but way down. That's courtesy of the Medrol. Corticosteroids are very good at temporarily reducing the nodes. So as long as I'm on a significant dose of Medrol the nodes should stay down. The problem is that Medrol is just a quick fix for that. It was really prescribed to get rid of the GvHD. Steroids are amazing drugs. No wonder the baseball stars like them so much. LOL They take a different kind of steroid, of course.

What we really want is for the graft and the Rituxan to permanently take care of the CLL/Lymphoma. Once the Medrol is gone, we'll see what we have. I'll be monitoring these nodes for the rest of my life. I guess all cancer patients are always looking over their shoulder to see if it's going to catch 'em. I can deal with that I guess. At least I'm vertical and warmer than ground temp.

Alan, you asked for my Super Bowl prediction. You could get just as good a prediction asking a tree. My record this fall has been pretty poor in the college ranks, and I know even less about the pros. But, not knowing about something has never stopped me from having an opinion on it. LOL I like the Pats if Brady's leg is okay.

Steady Progress

I got another big bag of Rituxan on Thursday. It didn't wipe me out as much as the previous two weeks' infusion did. I'm not sure what that implies, though. Probably nothing, so I'll gladly take it.

The blood Tacro level slipped to 4.3 from 4.5 so they upped the Tacro dose to 2 mg in the morning and 2 mg in the evening. I think we will still have a target as low as possible without bringing on GvHD. That will still require a little tweaking before they let me go home.

They reduced the Medrol dosage down to 96 mg a day and will reduce it further on Monday. All the skin GvHD is just about gone, so that will allow them to back off on the Medrol. At the same time you have to decrease Medrol slowly for a couple of different reasons. So it will be a few weeks before I'm completely off of it.

I suggested that I increase the number of magnesium pills I'm taking each day so that they can get me off the magnesium IV. They'll have to have me on all magnesium pills by the time they send me home. So you know what I'm thinking.

I'll be back in clinic on Monday as usual. I'll see Dr. Keating and Dr. Tam on Tuesday to get their assessment of things and get orders for one more round of Rituxan. Dr. Hosing has been out of town for two weeks, but I'll see her again on Thursday.

They have me scheduled for restaging (BMA, CT scan, PET scan) the week of February 11.

Thanks for checking up on me.

Making Progress

I was in clinic today instead of yesterday due to the MLK holiday yesterday.

The blood counts looks good. In fact the red blood counts look the strongest they have been in probably two years. White counts are good, too. But the Rituxan will suppress them somewhat.

The Tacro level in the blood was 4.5 this morning. The normal therapeutic level they shoot for is between 4 and 9. But we went below 4 a couple of weeks ago to encourage the graft cells to attack. Attack they did. So that's why we now have to battle the skin GvHD. But that's looking much better, so they reduced the Medrol dosage again today. They also bumped up the Tacro dosage just a little to try to push the Tacro level up to about 5.

I don't know if I'll get another massive dose of Rituxan this week or not. It sure does wear me out for about three days. I've slept on pillows smaller than these bags of Rituxan. I'll speak with Dr. Tam (Keating's boy, as he called himself when we first met) tomorrow to see if we do another round this week. Tam is a young oriental Australian. He is very sharp. Keating is Australian, too, hence the connection. They're both world class researchers/physicians and a pleasure to work with. I can't say the same about the transplant department - the dark side. Dr. Hosing is pretty good, though.

I'm happy that the Tacro level was at 4.5. I thought we would probably overshoot and have to come back down, spending a couple of weeks tweaking that. But it looks like we are about there. So that puts me ahead a little in getting back to a point where we can just monitor the CLL/Lymphoma.

Update

I'm making progress getting things back to "normal." The liver enzymes are improving. One is back within normal range and the other is getting there. That was as of Thursday's readings.

The skin GvHD has improved. I'm rubbing a steroid cream on the affected areas three times a day, plus they have me on Medrol, a steroid. Medrol has some nasty side effects, but it does clear up the skin GvHD. Also it shrinks the lymph nodes. Although shrinking the nodes with steroids is not really what we want to do. We want the Rituxan and and graft (donor cells) to shrink the nodes.

The blood Tacro level was 2.5, still below the minimum target range, but off of the zero reading on Monday. And, yes, the zero reading was on Monday, not last Thursday. So my concern about them dropping the ball was unfounded.

So this week I hope to greatly reduce the Medrol dosage. Finish off the skin GvHD. And get the Tacro level stable and in the lower end of the target range.

Then we get to watch what the nodes do. If they begin to grow again we have to keep beating them back to help the graft work on the CLL/Lymphoma. If they don't come back it will be evidence of GvL (graft vs. leukemia) which is the whole point of the transplant.

It's a process, not an event. The process can really be rough to go through.

Getting Things Back Under Control

By the time I got to the clinic for my standing Monday appointment, the skin GvHD was pretty extensive. It was on and in my hands so bad I could hardly even straighten out and wash my hands. And my feet felt like I was standing bare foot on gravel. I had skin GvHD from neck to the tips of my toes, literally.

So they didn't waste any time. They gave some Medrol, the dreaded steroid that eats your muscle mass, via IV and doubled my daily Taco dose to 2 mg per day. I've got Medrol pills to take thereafter. We'll taper off the Medrol very quickly as soon as the GvHD is under control. Medrol is nasty stuff.

Unfortunately, Dr. Keating didn't get to see the effects of the Rituxan on the nodes before the Medrol kicked in. So when I saw him on Tuesday, the nodes were way down, courtesy of the Medrol. Keating had to rely on my observations on how well the Rituxan worked. I gave it a 30% to 50% effect before Medrol, which I was actually disappointed in. He wasn't disappointed in that level of response he said; he just wanted some noticeable effect. He decided to give me another round this Thursday, tomorrow. So I'll be a couch potato for a couple of days unless the Medrol keeps me hyped up a little to offset it.

I didn't get the blood level Tacro level back last Thursday before I left the clinic since it takes all day for the Tacro test to come back. So I asked Keating's nurse what it was. She said on Thursday the reading was ZERO. Zero. The APN and PharmD in the clinic should have been all over that Thursday evening or Friday morning and been upping my Tacro right then. Raising my Tacro dose immediately might have saved me some pain Sunday and Monday and might have kept me off the Medrol. They better have a good reason when I see them in the morning. If they don't they are going to get a big earful from me. I just don't suffer incompetence well. MDA is a great place and everyone makes mistakes, but that kind of sloppiness is just not acceptable. They're not going to have a good Thursday if things are as they appear.

Going forward now, we know what level of Tacro in the blood stream to balance at. We have to get rid of the GvHD. Taper off the Medrol. Get the Tacro level back to where we want it. Hit the CLL/Lymphoma with more Rituxan to keep it at bay. Then sit back and wait for the graft (new cells) to work on the pesky remaining CLL/Lymphoma cells.

Basically we're trying to get back to where we were on Day 54 just before the nodes popped up. They'll keep me here after we stabilize again to see if any more nodes come up. And that's the way the process plays out - trial and error, see what happens, fix it, try again. That's why they keep you here so long after transplant.

Walking the Tight Rope

I definitely have plenty of GvHD now. They dropped my Tacro dose down to 1 mg per day a few weeks ago when I had very little GvHD. Tacro is short for Tacrolimus, which is the anti-rejection medicine.

I now have a lot of skin GvHD. My liver enzymes have been up for a week or so, so I may have some GvHD in the liver, which they will not gamble with. And I may have a little in the GI tract. So it looks like I'm batting 1.000.

Now for the tight rope analogy. We want a fair amount of controllable GvHD since that's evidence the graft (new system) is working. We especially need the graft to work now on the Richter's Syndrome lymphoma. But you simply can't risk losing the liver. So it's a balancing act.

The nodes under the right arm seem to be down some after the massive Rituxan infusion on Thursday. And my arm is not as sore, which means the nodes are not pressing against the muscles as much. I'll see Dr. Keating again on Tuesday to see what he thinks of the progress we got from the Rituxan. Then we get to decide what to do next.

So that's where we are. I go to clinic tomorrow morning just like every Monday and Thursday. I'll get blood work done first as usual. What the liver enzymes say will determine what they do with the Tacro level. Sounds like we're reading tea leaves, doesn't it? Sometimes I wonder myself.

Day 62 And the Plot Thickens

Just when you think things are going so well .........

Last week I noticed my right shoulder was a little sore. On Friday morning it was real sore. So I began to rub around the shoulder trying to find that sore muscle. Instead, I found a big, and I do mean big, lymph node just below my armpit. It wasn't there, at least not that size, on Thursday.

Well that sent me into a tailspin since that was obviously not good news. At 55 days post transplant, nodes are not suppose to be enlarging. So I tracked down Dr. Hosing and saw her that afternoon. She ordered a biopsy which was done Monday afternoon.

She also sent me to see Dr. Keating, my leukemia doctor, in order to line up a little chemotherapy directed at the offending node. I saw him yesterday, Wednesday. The results of the biopsy were back, but it was obvious that it was transformed large cell lymphoma because of the size and the speed with which it appeared. This transformation has a name, Richter's Transformation. I've talked about it before. It is not good news because this form of large cell lymphoma is very aggressive. That's why I tracked Hosing down so quickly.

The good news is that I still have a successful transplant, with 100% chimerism. I have a fair amount of confirmed skin GvHD which, if kept under control, is a good thing since it is a sign that the new system is actively looking for foreign bodies to attack. Now if it will only direct it's attack on the diseased cells.

My old disease is pretty sneaky, and even though we supposedly killed off all of my old marrow, some disease and/or aberrant DNA has survived. And it is determined not to go down without a fight. So we now have to kill, or at least weaken, this lymphoma so that the new system can finish the job. Much like calling in an air strike to allow the ground troops to advance. We are going to use a high dose of Rituxan, which I am going to start any minute now here in clinic. As you will recall, Rituxan is a monoclonal antibody, not really chemotherapy, that targets specific cells that have the CD20 protein marker of CLL. This should have some immediate effect on the big node as well as other smaller nodes that are present. If it's going to work it will work within a few days. If it doesn't work the next step is to join a phase I study of a drug called Sunesis.

They just hooked up the Rituxan. That's the biggest bag of Rituxan I have ever seen. And I have seen a lot. I'll be here quite a while today taking all that in. That bag sells for about $30,000. And the insurance company takes another hit.

One of the pre-meds they use with Rituxan is Benadryl. They hooked that up about 30 minutes ago, so I'm beginning to get a little loopy. Looks like a nap for me.