Wednesday, February 29, 2012

PETs and Gorillas

Dave’s Great Adventure
Book 5, Chapter 1, Verse 4
February 29, 2012

Hello again. Today was a much better day.

We started out with me getting my PET scan (Positron Emission Tomography, if I'm correct). It's a scan which combines a CT scan with a nuclear medicine scan using some sort of radioactive isotope of iodine. Apparently malignant cells are aberrantly hyperactive metabolically and gobble the stuff up faster than normal when the radioactive iodine is attached to a molecule of sugar. So they do a CT scan of my body, and then overlay that scan with a scan of the overly active parts of my innards. Sounds easy, and actually it is, but the prep for the study...well, I wasn't ready for it.

I had been told I couldn't eat anything for six hours before the study, so I expected that I couldn't eat or drink anything after midnight, as with many tests and surgeries and such. So, we bought some carrot cake for me to have as a midnight snack and I ate it about 9PM. Only then did I find (on-line) the M. D. Anderson instructions for the scan, which included recommending a high protein meal the evening before and avoiding carbs. Oh well.... Turns out I could drink as much plain water as I wanted, too, even up to test time. I really should read the instructions to these things, but I suppose I think I know too much to be concerned with such details.

Anyway, we went up to the med-cen again today and found our way, with the help of a golf cart shuttle system, through the mazes of buildings and skyways. M. D. Anderson is a small city, self-contained with villages, parks, paths, hotels and restaurants. It would take a while to find your way completely around the place. But we're learning. We found our way, with the shuttle help, to the Mays Clinic where the PET scans are done. It's in a completely separate building from the main CT scanners, curiously, perhaps a quarter of a mile away. I had, according to my schedule, three appointments there. The first was "prep," followed by "injection and localization" and then "lymphoma restage." I checked in and sat down. A short time later my name was called, and I went to the back. Turns out all my appointments all ran together and I didn’t see Kathy again for several hours.

The "prep" involved getting out of all my clothes which had metal, like my jeans, and getting into scrubs. Then I had an IV put in my hand. Then, I was told, I would "rest." "Can I read the paper?" "Can I get my cell phone?" The answers were "No, you will rest. And uncross your legs." I was commanded to "rest." I joked, "Well, can you give me a Valium or something so I'll rest?" But they took me too seriously, so I told them that, no, I really didn't need a pill. Then they turned down the lights and left on a backlit picture of a park, with a pond and daffodils in the foreground with red and purple tulips in the distance, in front of me. I rested. ZZZZZ

About 30 minutes later a tech came in with a syringe encased in a heavy metal case. It was the radioactive iodine, with which I was going to be injected. He told me what it was and what he was going to do, he did it, and told me, again, to rest. For an hour. So I rested. With my legs uncrossed. ZZZZZ An hour later, another tech came in, and told me we were going to get my scan but first I was going to be given the opportunity to go to the bathroom, which I did. I came back out and sat in the chair where I had been told to wait. A tech walked by, looked at me and said, "Uncross your legs." I'm unclear, still, about the prohibition on crossing one's legs. Soon I was taken to the next room where the scanner was and was placed on the machine, which was, generally, like an MRI machine with a large tubular structure, which I was moved into and out of sequentially. It took, maybe, 30 minutes and it was all over. I guess the results will be available in a day or so.

Meanwhile I still wondered what my longer term plan was to be. After my PET scan, I had no further appointments at all. When I last saw Dr. Keating, the plan was to get on the new PCI 32765 protocol, but when that plan fell through, I was left with no follow-up appointments or scheduled tests. Before I left his clinic, Dr. Keating's nurse had told me that he didn't like to be told "No," and might argue with the protocol managers. But, after Gracie came back yesterday and told me that no exceptions could be made after having called them, I gave up.

But, Dr. Michael Keating is an 800 pound gorilla within the CLL community. If you Google his name and CLL, you will find probably hundreds of references and scientific articles by him. Plus, he runs his own CLL research organization, the CLL Global Research Foundation, which sponsors research all over the word. He lectures every month in locations around the world. Just this week he has returned from lectures in Hong Kong. So when I went back to the clinic this afternoon to see his nurse, she told me that HE WANTS ME to get on the PCI 32765 protocol and was still "in discussions" with the protocol manager. She told me to check back tomorrow by mid-morning to see if there had been any change. By now it was mid-afternoon so, we went back to our motel to get some rest.

Soon the cell phone rang. It was Gracie, the research nurse. She said that the protocol managers, after "further consideration," had allowed me to get into the protocol. Amazing, just amazing. The logic they used to make this exception seems to be that they decided the Rituxan which I had been given in connection with a stem cell collection in 2004 didn't count as "treatment." It was just used to mobilize my stem cells for the collection we did back then. I don't really know what difference that should make, but I'm happy it happened. Rollercoaster starting up, safety bars engaged, clank, clank, clank, clank....

But I'm not totally out of the woods with this study, yet. My understanding is that yet another exclusion from the protocol is the presence of Richter's Transformation, and we still don't know if I have this or not. My labs and exams are suspicious for it. The PET scan from today and the biopsy soon to be done will sort this out. Tomorrow will bring more information and hopefully no bad surprises.

And, as always, more later.


Tuesday, February 28, 2012

Irony of Ironies

Dave’s Great Adventure
Book 5, Chapter 1, Verse 3
Irony of Ironies

February 28th was a tough day. We got whipped one way and then the other. The day before we had gotten the news that my labs indicated the possibility that I had developed the deadly Richters Transformation form of CLL which I've previously mentioned. It happens in about 10% of all folks with chronic lymphocytic leukemia. The transplant folks mentioned that one of my lab tests indicated this possibility (specifically my LDH, lactic dehydrogenase test, which was elevated).

So the next day we went to see my CLL expert doc. You may remember that last August when we found that I had the p53 mutation (which has a much worse prognosis than the form of CLL without this change) he started me on Arzerra to help me hold my own against the disease while they were waiting for some new drugs to be available. He picked the Arzerra because it's an antibody type drug, and as such, does not damage the body's immune system like most chemotherapy regimens. It worked at first but became ineffective after about five months. When I was found to have masses growing in my belly on CT scan a couple of weeks ago, my doc talked to Dr. Keating and was told there was new clinical trial which was just opening up at M. D. Anderson and that I was "Number One" on his list for it. I wasn't told what the trial involved but figured it might include the use of the new Bruton's Tyrosine Kinase drug, PCI 32765, which I've also previously mentioned. More about it later if I actually end up on the drug.

So we saw his nurse practitioner who examined me and went over my labs. She confirmed that the disease was progressing and that my labs indicated the possibility of Richters, though we still haven't confirmed this. She also mentioned that with my new finding of possible Richter’s Transformation, I wouldn't be a candidate for the new PCI 32765 drug. That was an incredible downer to hear. I had been anxiously awaiting this new stuff which seemed much too good to be true; a pill a day without side effects, with a little Rituxan (another antibody type drug) thrown in on monthly basis for a few months. So, after hearing that, Kathy and I sat in the office, glum with disappointment while we waited for Dr. Keating to come in.

But then he came in with a big smile on his face. "Just in time!" he said. The new drug is available and it will be perfect for me, he said. It shrinks tumors, even aggressive ones, and increases antibody levels, reduces infections, is well tolerated, and so on. Folks have been on it for 18 months or more without any serious side effects. He said he'd send in his research nurse to sign me up for the new clinical trial. Wow! After, being so bummed after our discussion with Dr. Keating's nurse, this was a complete turnabout. Kathy and I mentioned how rapidly things seem to change in my disease and that we've been through the CLL roller coaster more than one time. This was yet another up and down and up.

As soon as he left the office for his next appointment his staff started trying to arrange a few things that I would need before starting on the new drug, the PCI 32765. I would need a bone marrow biopsy and an infusion of Rituxan. They were working in getting these set up ASAP, later the same day.

Then Gracie, the research nurse came in. She started to sign me up for the protocol but stopped short, very early on, as we discussed my past treatments. She said she hadn't realized that I'd had Rituxan on three previous occasions (I had had the drug in 2002, 2004 and 2008), thinking instead that I'd only had it twice before. Then she said the new protocol excluded anyone who had had the drug more than three times. "But," I protested, "I have only had it for a total of three times so far!" Yes, she said, but you also had Arzerra earlier this year and that counts as a Rituxan infusion, as it's in the same category of drug.

She then left to try to talk to Dr. Keating, who by now was doing a webcast for the Leukemia and Lymphoma Society, but in between questions and comments, he was texting her back. "WHY!!!" he texted when told I wasn't eligible for the new study. Gracie apparently contacted the folks running the protocol, looking for an exception, but none was forthcoming. After about 45 minutes, she and Dr. Keating's nurse came back to say that it looked final, that I wasn't eligible.

So, here is the incredible irony in all this. The drug that Dr. Keating gave me to try to keep me healthy long enough to get me involved with the new drugs that are just now coming into availability, the Arzerra, is the drug which now makes me ineligible to take part in the study, now that it's finally available. That's just amazing. Depression to elation to depression in 15 minutes. The roller coaster. Again. Tomorrow I have a PET scan and at some time thereafter (soon I hope) they'll schedule a fine needle aspiration/biopsy of one or more of my tumors. I'm not sure what that'll lead to in the short term, but if I in fact have Richter’s, I think I'll be starting on high dose chemotherapy soon and the stem cell transplant will be expedited. But, that's just conjecture right now. Right now we have no concrete plan, but we'll have to have more details before we leave Houston. I hope to talk to Dr. Keating and his staff again tomorrow to see what they say is the next step, since the step we were left with today fell off a cliff. Stay tuned.


Monday, February 27, 2012

First Update From Houston

Dave’s Great Adventure
Book 5, Chapter 1, Verse 2
First Update From Houston

We had a wonderful trip to Antarctica. We were kept busy with multiple daily landings and cruising out among the wildlife and icebergs in the inflatable zodiacs that we used to go from ship to shore. We were tired from all the activities but it was worth it. Even the 5AM awakenings (which were 2AM Dallas and body time) were ultimately worth it as there was so much to see and because we had to make the most of the precious few days we had available to spend there. It was a special time. This place belongs on everyone’s bucket list.

But as soon as we got home we had to prepare to leave again, as we had to be in Houston for multiple test and evaluations within five days. So, Kathy worked on huge loads of laundry while I caught us up on bills and errands. Then we packed up again and drove to Houston, a drive we have made many, many times in the past five years or so. I was expecting several days’ worth of appointments as we had a lot of ground to cover and many questions to answer about my condition and its possible treatment.

First, as I suspected, they had added on some appointments to the two days' worth that had previously been scheduled. This was mostly because of the many large masses found in my abdomen on the CT scan I had just before we left on our trip a couple weeks previously. So, our originally planned two-day trip turned into a four day “vacation.”

We first met the very nice folks at the transplant clinic and as far as they're concerned, I WAS having a transplant, probably within 3-5 months! There was no question about it! And here I thought we were just going to meet some folks and have some questions answered. My transplant doc, Dr. Khouri, is one of the pioneers of transplant procedures for leukemia. He says, and I've heard this before, that a transplant is the only possible cure for folks like me with the p53 mutation, which I described in some detail a few months ago. So, “full steam ahead,” according to him. He has scheduled a PET scan for a couple of days from now (to check for malignancies) and a lymph node biopsy at some time yet to be determined, but pretty soon, if they can possibly arrange it. They're still actually thinking that I may have the deadly Richter's Transformation lymphoma, based on some of my labs. The PET scan and biopsy will be important to confirm or deny this possibility and will help treatment.

I probably need to stop at this point to explain a couple of things. First I want to tell you why this new mutation I have, the p53 mutation, is so deadly. The p53 gene is called the “tumor suppressor gene.” It tells cells to die when they are damaged. Now, most chemotherapy works by damaging cells so they will die. The alkylating agents and purine analogs that make up most standard chemotherapy regimens, like the Fludara and Cytoxan I’ve had in the past, work on this principle. They damage a cell’s DNA so that they will die. But now that my disease has the p53 mutation (also called the 17p deletion but meaning the same thing), my cells don’t know to die when they’ve been damaged. That’s why my disease is now so resistant to treatment. And that’s why most leukemia experts now strongly urge folks like me to get a stem cell (or bone marrow; same thing) transplant as soon as possible after finding out we have the deadly mutation. But these transplants can have their own risks of death, disability and numerous complications.

But Dr. Khouri quotes “only” a 5-10% mortality from the transplant procedure, better than the 15-25% death rate I've been hearing from most transplant experts. The success rate in curing my disease is said to be 50-70%, depending on my disease and how well might respond to pre-transplant chemotherapy.

We met with the stem cell coordinator also. We already had some cell-typing results showing that my sibs don't match me, from tests done back in 2002 when I first got sick. My cells were also partially tissue-typed during that study. Based on the partial HLA (human leukocyte antigen) tissue typing that was done back then, she searched the marrow banks' data banks and found...get this...70 potential donors! Now, this number will decrease somewhat as they get the final parts of the tissue typing done (I had ten tubes of blood drawn today to get a complete HLA panel done) but as she said, all we need are one or two potential matches. Interesting news. I wonder where all these folks are. Since my dad was full-blooded Swede, I'm half Swede. I wonder if all these folks are in Stockholm or somewhere. Or maybe in the upper Midwest where lots of Swedes settled in the 1800s. Anyway, it will take, she said, 3-5 months to get a donor lined up, which is what limits and sets the time frame for the transplant. We should hear within about ten days about whether a match has been definitely located, though not necessarily if that match is truly available just yet (are they still alive, willing to donate, free of disease, etc.).

If/when I have the transplant, they'll want us to move down to Houston for 3-4 months. Wow! They have given us the name of a social worker who can help us find nearby housing, and my cousin, Amber and her husband, have also offered to put us up at their home west of town if need be. There’s also a huge hotel complex right across the street from M. D. Anderson which is in some way connected to the workings of the medical complex. It even has a skybridge connecting it to the cancer clinics. When I have the transplant I'll be in the hospital for about three weeks and then have to have daily visits for a couple of months! Sounds pretty intensive.

By the way, I had to sign a contract saying that I understood that my kind of transplant would cost anywhere from $560,000 to $1,100,000 or so! “But,” I was told, “that will include today’s consultation.” Man, I’m glad that the consultation wouldn’t be an additional expense on top of the million bucks.

I see my leukemia specialist tomorrow to see about whatever clinical trial he has in mind. The only thing I can see that would interfere with getting the stem cell transplant in the coming months would be if the drugs from this new clinical trial worked much better than anything else ever has. We'll find out his thoughts on this topic tomorrow.

And that's all the news for now. This adventure keeps on getting more exciting.

Bye now,


Intro to Book Five

Dave’s Great Adventure
Book 5, Intro
April 2, 2012
Astounding…just astounding!

We’ve had an extraordinary spring here in north Texas, with mild temperatures, gentle rains, lots of sun and perfect conditions for new growth. Everywhere one looks the trees are covered with fresh green foliage. And the byways, pastures and meadows are covered with a soft green growth of grass and flowers. Our famous (at least here in Texas) bluebonnets have formed wonderful carpets of blue almost everywhere you look along the roads and they’re interspersed with patches of magenta from the clover flowers and yellows from the daisies and such which are also blooming in profusion in many areas. The breezes have been gentle as well, unlike the typical screaming winds we often have in north Texas in spring. It’s been just about perfect and, I think, it’s the nicest spring we’ve been privileged to experience since our move back to Texas six years ago. It’s a beautiful season of renewal, new life and new hope.

I haven’t written anything in my long-running DGA series in a while, not because nothing has happened, but to the contrary, because we have been so very busy in the last two months. So much has happened that I haven’t been able to keep up. What little I’ve written I haven’t completed and only my family and a few friends have been kept abreast of what has occurred. And some incredible things have happened, both good and bad. I thought now would be a good time to try to catch up. But, since so much has occurred, I’ll break the update into a few shorter stories and send them out a bit at a time.

Some of my family and friends will recognize earlier versions of the chapters as I’ll base them on letters I have shared with them over recent weeks, but many of you will see this stuff for the first time. But the story is just amazing, at least to me and Kathy, in the number things that have occurred in such a short time, and the timing of so many events. I’ll be sending them on shortly. If they become tedious, the “delete” button can be your friend. If you find some of this interesting, I’d love to hear from you as I get the stories out to you.


Wednesday, February 8, 2012

Bad To Worse

Dave's Great Adventure
Quick Update
February 8, 2012

Just a quick update on what's going on with me. I'd been wanting to do another DGA but not enough info has been available yet.

I have been waiting and waiting to hear something, something, from M. D. Anderson. I've e-mailed repetitively and gotten some hints from Dr. Keating's nurse, but no definitive answer on what's happening next. I'm supposed to be enrolling in some new clinical trial. I'd like to know something about it.

Meanwhile, last Friday, I got a call from my local doc's nurse. He was ordering a kidney ultrasound because my creatinine had gone up a bit. I thought that was weird as I was wondering what they could possible see on a sono that might be causing it to go up a bit. Normal is about 1.0; mine had been about 1.2 to 1.4 recently, but now was 1.6. So I had the US done. It showed slight enlargement of the left kidney and "soft tissue masses" impinging on the bladder. As soon as that report hit my doc's desk, he ordered an immediate CT scan of my abdomen and pelvis...actually dragged me out of the tub the next morning to get back down to the hospital. He had to hurry as we're supposed to be leaving for Antarctica (a long way from any medical care) tomorrow!

So, we got down there, drank the lovely 24 oz. drink of "contrast, waited 90 minutes and had the CT. It took all of maybe 5 minutes.

The CT shows widespread adenopathy (either swollen lymph nodes [hopefully!] or a new tumor, a lymphoma) in my belly, along my aorta, around my bowel, and some up to 6-8cms in size (tennis ball to orange size) near the bladder. That's not good news.

Many calls went between me an my local doc and my local doc and Dr. Keating. They say nothing is going to change in the next 12 days so I'm free to go to Antarctica, but some stuff is gonna happen when I get back. I'm not yet sure what all is going to happen, but I did get a clue about the clinical trial.

I was thinking that the CT findings might represent what's called Richter's Transformation, a deadly form of lymphoma that can CLL morph into about 10% of the time. That would leave a predicted longevity of 6-8 months. But I guess my docs don't think so, as they're letting me go ahead, and they're still planning on enrolling me in the new clinical trial. If I had RT, I would probably need intense chemotherapy ASAP followed almost immediately by a bone marrow transplant.

But Dr. Keating says he still plans on enrolling me in the clinical trial when I get back, and I will be the very first on the list. He believes it will be approved by the end of this week. Great, but I still don't know what the trial involves. But...I'm Number One!

After we leave town tomorrow we will be out of telephone and, for the most part, e-mail contact until we get back on the 21st. So, I won't know any more until we get back to town, and may not know any more until we get back to Houston in late February. We have appointments on the 27th and 28th.

And that's all for now. More later.