You are feeling verrry sleeepy

Posted by Becky

What has Leif been up to, you ask? How is he doing? Leif has been sleeping. He gets up for an hour in the morning to eat and take medicine and deal with anything else that needs to be dealt with, then he goes and takes a nap. He does something similar at lunchtime, and tries to get some exercise. At suppertime he's usually up for 2-3 hours. His labs are looking okay; he just has a ton of fatigue. He makes an effort to exercise every day, generally by taking a walk, to build his fitness levels and combat the fatigue.

One of his doctors said that we can think of the DLI as a second transplant without the heavy-duty chemo and radiation first, and I think that he is experiencing something similar to the post-transplant fatigue he was feeling in February/March.

We have enjoyed visits from Leif's sister Fiona and friends Mike and Carol. I'm back at work and enjoying having something resembling a regular routine. Leif has been putting energy into keeping the information flowing so a crew can, at long last, finish our house. 

Out of the hospital.

I am out. Got released yesterday afternoon, which is a full week earlier than they had originally suggested. I have a meeting with Dr. Meehan on Thursday, so we are staying with my second cousins (my mom's cousins) who live in Vermont. They have a beautiful home on some beautiful land and they are two of the sweetest people you could hope to meet. Becky and I are enjoying sitting on the porch reading, looking out at the gardens. The day has been very nice. 

I am doing well enough that they did not bother to drain the rest of the fluid from my lung, but believe that it will be re-absorbed naturally. My breathing seems to be uninhibited, although it is not like I am doing windsprints or anything very challenging. The lymphoma is in remission, although it still shows up on the PET scan. The doctors and I believe that my donor cells are going to take care of it. The doctors believe that it will try to relapse eventually, but we can keep it suppressed with the chemo drug Velcade before it becomes an actual relapse. So my worst-case scenario has changed from "September" to "several years".  Basically, until my lymphoma become resistant to the Velcade. I still have high hopes that my donor cells will stay ahead of the lymphoma indefinitely. While I will never be "cured" because my lymphoma is refractory, if I never have another relapse, it is basically the same thing. As long as the donor white blood cells recognize and hunt down the lymphoma faster than the lymphoma reproduces, I will not have a relapse. I have some faith in my donor cells. So far they have responded well above typical. Go team!

The only problem I currently have is a pain in my abdomen directly below my spleen. Nothing showed up on the PET scan or on the X-ray that I had, so it is probably not anything that will lead to further complications, but it hurts quite a bit. I am on a good amount of pain killer, and it is all for this abominable pain. It has been going on for about a week. Originally we thought that it was a gas bubble, as some of the medications that I was on were causing me some problems in that area, and then the thought was that perhaps something was bruised. Although Becky just reminded me today that I had a very similar pain, in the same place when my spleen was shrinking. It is, in fact, shrinking again. So that might simply be the problem. There is probably still scar tissue in there from when it was so swollen, and is it shrinks it tugs on things and pulls in ways that are uncomfortable. It is one of the things that my doctor and I will discuss on Thursday.

If that meeting goes well, we will be back in Cundy's harbor that evening, and back in Brooks on Friday. We are planning to stay up there permanently, except for regularly scheduled trips back to Dartmouth-Hitchcock for check-ups. We are excited to finish our house, so that is the big push through the end of the summer and the fall. 

Leif

PET scan and T-cell infusion results.

Quite a bit has happened since my last post. I have been told that a number of my posts are overly technical, so I will do a quick summary, with details below for those who want them.

On Monday I got a scan that showed that my more lymphoma was killed by the chemotherapy than was expected. They also removed the tube that was draining fluid from my lung removed. Good day.

On Tuesday, I got the last dose of the light chemo. I also got the T-Cell infusion, which consists of adding 5 million of my donor's previously frozen white blood cells to my system to help fight the lymphoma and repair any damage to my bone marrow that the chemo may have caused. Both the chemo and the infusion made me feel pretty bad, and I had a mild reaction to the infusion. The reaction faded by the next day, but I have been pretty fatigued for the last few days. I am currently feeling pretty well, and doing better than the doctors expected. They may release me earlier than I was expecting. Perhaps even early next week.

Gory details:

So, the PET scan on Monday was freaking rough, not just because of the 3/4 of a liters of contrast that you have to drink before hand (and contrast is one of the worst beverages I have ever had), but because the tube into my lung, which they call a "chest tube" is pretty fricative, and it sort of got caught when the PET scanner moved me into the scanning drum. It tugged fairly hard and was excruciating. There are, of course, no technicians actually in the room when the scan is running because it is radioactive, but they heard me, turned off the machine and did take care of the problem by taping the hose directly to the table after giving me enough slack. I had repeatedly warned the technician that the hose was going to be a problem. I had intended to tuck the hose slightly under my butt to prevent exactly that sort of thing, but I got secured on the scanner board before I could do so. So I was unhappy about that. Having a tube that goes through your back, between your ribs and into your lungs tugged on feels just about as unpleasant as it sounds. It did not, however, pull out. Thank goodness. 

The result of the PET scan showed that the lymphoma responded to the light chemo better than was expected. We knew it WAS responding because my lymph nodes had stopped being swollen and had gone back to normal. This is really important, because my lymphoma has never responded to light chemo before, and the dire prognosis from June was based on that fact. If the lymphoma had not responded to this particular course of chemotherapy, there was in fact a good chance that I would not have made it past September. So, since it has responded better than expected, it is thought that we can keep it in remission by having me tested regularly, and before it actually gets to the point of relapse, hit it with a dose of Velcade and my donor T-cells and B-cells will be able to keep it at bay. 

The PET scan also showed that there was still some liquid in my lung, but it was in a different pocket than the tube, so the tube had to be repositioned. Later that day they sent me down to have that done. There were two posibilities. One was that they could fiddle around with the tube without taking it out and get the end into the other pocket. The other possibility was that they would have to take the tube out and put it back in, in a different position in order to get into that pocket. Since I am not longer symptomatic (my breathing has been deep and pretty clear), If it was the second case, I advocate fiercely for taking the tube out completely for a while, and they could put a second tube in again in a few days. Give me a break from having a tube in my back. It did turn out to be the second case, so I advocated with the nurses, who had sympathy, but voiced the opinion that it was unlikely to happen. I advocated with the doctor, who listened, paused for a while and then went to consult with her colleagues. She came back and said that they all thought that was a wonderful idea. Yay!!! So she pulled the tube (I did not get any painkillers for this, and in fact it did not hurt beyond a sharp pinch, but it was one of the weirdest, most disturbing sensations I have ever felt. The tube went more than half-way inside me, and when it came out, it felt like a rib, or part of my lung, or SOMETHING important inside me came out with it, but it was just the sensation of my body having gotten used to the tube there being surprised when it suddenly was gone.) I felt immediate relief. The tube had been hurting me more than I had realized, and in less than an hour I was feeling my usual joy at being alive. While the tube was in me, I was feeling pretty grim. It was hard to truly be upbeat. 

There was a little incident about an hour later, when the dressing over the hole suddenly was soaked with some last bit of lung fluid and blood, and it sort of ... spurted out. It did not hurt, and it probably is a measure of the roughness of this last year that I found it funny, hitting the nurse call button, trying to keep pressure on the dressing, and moving quickly away from my laptop, so not to get this nasty fluid on it. It was easily cleaned up and the dressing changed. I kept some pressure on it for about an hour and it has been fine since. 

The next day, the last of the Velcade. This drug attacks fast-growing cells, so it tends to make me nauseated, and it did. I rested until they came in to do the DLI, which is the same as the T-cell infusion. Unlike last time, the cells were frozen. The cryogenic preservative is pretty nasty and also lead to me being a little nauseated. They did not have to give me a new line, but were able to put it through my port. Or so they thought. Then at the last minute, with the nurse standing there, and the time ticking away (because after the cells are thawed they have a limited time to be put in the body - about 10 minutes), they realized that they were not POSITIVE that the cells could go through a port. A call was put into the doctor. No response. They had another nurse poring through the available information. Typically the cells are put in through a central line which is bigger than a port. The cells are fairly large and somewhat sticky, so putting them through a line that is too small might kill the cells or clog the line, or both. The other nurse came in and said that the doctor had not yet returned the call, but all the information she could find IMPLIED that a port line would work just fine. The cell technician and the attending nurse took a deep breath and went for it. Just after she had put the last ones in (it is a 5 minute push) the doctor called back and OK'd the procedure. Whew!

I had a light outbreak of Graft vs Host disease, which was not really bad, since it meant that the T-cells had made it in alive and were doing their job. The outbreak consisted of a rash around my neck, chest and upper back. It does not itch yet, but it will later, when the skin begins to peel. At least it doesn't hurt.

So the last few days I have been napping quite a bit. I have taken some walks. A loop around the hospital, on the inside works out to be about 1/2 mile according to my pedometer. I try to walk a half mile a day, and sometimes I am up for two loops. I have been having a little gastric distress, but nothing major. Otherwise, things are looking very well. 

Leif