Maintenance Mode

Dave had an infusion of Rituxan yesterday, and got his bloods drawn just prior to the infusion. So we didn't get the results until today. (The infusion went fine - he had a little sinus congestion, but nothing else.) His Hematocrit was down a bit, which has Dave a little worried, and disappointed.

Dave's leg is better than it was, but still nowhere near healed. And he's having a recurrence of the mysterious skin problems which seem to plague many CLL patients, and which every medical person dismisses.

Next appointment (for a doctor visit and blood tests) is about a month from now.

CLL Seminar in San Francisco

Dave and I attended a seminar this morning at the Hilton in downtown San Francisco: "Emerging Therapies for Blood Cancer Patients." It was organized by the Leukemia & Lymphoma Society and sponsored by several drug companies. The seminar was for patients and their caregivers and it was free!

Before I get into the details about this event, I just want to say that I have been very impressed and thankful for the assistance we've received from the Leukemia & Lymphoma Society since Dave's diagnosis. We got a big package of materials from them, in the mail, just days after we heard the news (the hospital social worker sent Dave's name to them.) It was during that time when we were still reeling from the shock. Not only have they been better than average in terms of providing information, but they even offer financial assistance. They'll be on the top of my list of charitable donations forever.

This was my first time at one of these LL&S events, although I used to attend things like this when I was still working as a nurse. Based on those past experiences, I was expecting the usual coffee & donuts before the first speaker began, at 9:15am. Imagine my surprise at being seated in front of this:

It was a strange feeling to sit in a huge ballroom, filled with hundreds of people, and think, "Most of these people have Leukemia or Lymphoma." You'd see a couple, and try to guess which one was the patient and which one was the caregiver, and it wasn't possible.

Throughout the day, every doctor or nurse who spoke kept expressing their frustration with the current state of health care in this country.

One of the first presentations was a special award that was given to Dr. Ronald Levy - he's the guy who invented Rituxan. Dave got all choked up and said, "That's the guy who saved my life." (That's Dr. Levy at right.)

The keynote speaker was Dr. David Spiegel, (at left) who gave an inspirational talk on "Living With Uncertainty." His specialty is stress disorders and he had some practical advice about living with the sword of Damocles over your head. He had done a lot of work with breast cancer patients, so many of his slides used artwork from those patients and examples from their stories. After his talk was over, we were talking with the couple next to us (the husband had lymphoma) and she said that she had breast cancer, so it seemed like the talk was custom made for them.

For the disease-specific talks, they divided us up into several different rooms, each with our own specialist & topics. The CLL room was packed - the speaker was Dr. Steven Coutre, a CLL researcher. I could tell he was trying very hard to avoid technical language and speak ordinary English, but he was still talking way over the heads of many (if not most) of the people in the room. His talk was about the latest prognostic tests and newest therapies, meaning things that have been learned in the last year about CLL treatment. He had tons of charts and graphs and thank goodness he had all the slides on a handout that we could take home and study at our leisure.

The good news is that:
1. Some promising new therapies are coming down the pike.
2. Dave has been getting good standard-of-care therapies.
3. I still wish we knew more about Dave's gene and chromosome status, but it wouldn't really change his treatment at this point.
4. There was nothing presented at this seminar that I didn't already know. This made me feel pretty good, because it meant that I haven't missed anything major in my personal cram-course of study on CLL. (And I give most of the credit for that to Dr. Chaya Venkat at CLL Topics.)


There was a question-and-answer session after the talk and Dr. Coutre committed to answering every question, no matter how long it took, which I thought was wonderful of him. Sadly, a high percentage of the questions were things he could not answer, and they indicated (to me) that most patients are not as interested in the technical research info as in quality of life issues. People had a lot of questions about night sweats, joint paint, fatigue, alternative therapies, diet, cost of treatment, best CLL centers, familial links to immune diseases . . . I wrote a note on my evaluation suggesting that they get a nurse and/or peer group to hold a session on those topics next year.

Benefit Concert

This just in - Dave's nephew is playing in this concert:

Please join us for a special night of entertainment, Saturday February 23rd at the Unity Theatre, North Bend, benefiting the Leukemia & Lymphoma Society. The evening will feature lots of dancing and music including the dark acoustic trio Ask Sophie, a couple of great punk rock bands Feed the Birds and Rumplesnakeskin, The Drummers and Dancers of Rogue Tribal, also Glory Daze playing classic metal/hard rock and much more...

There is a suggested donation of $5.00 at the door (but we don't want to turn anyone away). There will be food and drink available as well as a raffle and silent auction with too many items to mention (see the attached flyer) and all the proceeds will go to the Leukemia & Lymphoma Society. It should be a fun evening for a great cause, we hope to see you there!

Up and At 'em

Dave has been feeling pretty good lately - his hematocrit is up to 41% this week! (That's a measure of the red blood cells - he's been low in red blood cells for at least a year, sometimes dangerously low.)

Dave had his bone marrow biopsy on Tuesday. The doc told us at that time, that based on his labwork alone, things looked good and she expected that the bone marrow biopsy would show the cancer cells in his marrow to be down to 10%. In which case, he could wait another two months before seeing her again. Today she called with the results from the biopsy. The cancer cells in Dave's bone marrow (which were 80% when he was diagnosed) are down to "less than 5%" now.

So the new plan is for Dave to get an infusion of Rituxan every two months, starting February 20th. Now, if only the DVT in his left leg would clear up, we could maybe go a week or more without visiting the hospital.

Knee Takes Front Stage

Well, we didn't make it to the end of January before we had to make more trips to the hospital. Actually we didn't make it out of December. Right after Christmas, Dave was coming down the stairs and heard/felt a "pop" in his left knee. He had ruptured a Baker's Cyst, and his leg started swelling up. It didn't get better, and the symptoms are almost the same as deep vein thrombosis (DVT), so we got nervous and ended up spending New Year's eve at the hospital. They ruled out DVT and sent him home again, saying it would soon resolve on its own.

It didn't - it got worse. His leg got bigger, redder, and more painful, and today they did an ultrasound and diagnosed a DVT. So now he's on Warfarin (pills) and Fondaparinux (injections) and he's being followed by the "Blood Thinning Clinic." And he's pretty scared. I had a minor surgical procedure myself today, and I'm just putting one foot in front of the other.

Onward, into 2008.

(The Bone Marrow Biopsy is still scheduled for January 29th.)

The New Plan

Well, we finally had a sit-down meeting with the doctor today. Dave was originally scheduled to receive his eighth infusion of Rituxan in the outpatient clinic today, but Monday's bloodwork showed an ominous drop in his Hematocrit, Neutrophils, Lymphocytes and Platelets. The Neutrophils were the most alarming - down to 228 in absolute numbers. As soon as the results came (via automatic email from the Lab) yesterday afternoon, Dave became agitated and by evening he was having a real meltdown. We hadn't heard from the doctor in three weeks, in spite of Dave's repeated emails and phone calls expressing his concern and asking to for more information (like, what's going on and what's the plan?) Dave was scheduled to meet with the doctor today, after the Rituxan infusion, so we figured our questions would have to wait until then.

This morning, as we were getting dressed to go to the hospital, Dave got a call from the clinic saying that there had been a change of plans. He was supposed to come in earlier, to get a Bone Marrow Biopsy, then meet with the doctor, and then the Rituxan infusion, maybe - the doctor would discuss it with him. Dave had been relentlessly mulling over the possible scenarios for the last 24 hours, and this just added to the speculation. But as we wolfed down some breakfast, Dave concluded that the doctor was sure to cancel the Rituxan infusion, so he decided we didn't need to pack any lunches for the day. He was nervous about the Bone Marrow Biopsy, but figured it was for the best, because then maybe the doctor would tell us something and at least he wouldn't have to sit in the infusion chair for 3 hours, getting Rituxan.

When we got to the Oncology Clinic, we didn't have to wait long, and Dave was called in soon after we arrived. But instead of taking him to the procedure room (where they do the biopsies) we were ushered into the doctor's exam room. We waited there a long time (or it seemed that way to us.) When the doctor came in, she asked him how he's been doing since she saw him last month - he's actually been feeling pretty good, and the only changes have been some mild night sweats during the last few days. Then Dave asked her what was going on with his dropping blood counts and she said that the bone marrow was depressed and that she didn't really know why. It could be the Rituxan, but maybe not. She had changed her mind and decided against the Bone Marrow Biopsy because it wouldn't really show much, with his marrow so depressed. But she wanted to go ahead with the Rituxan infusion for today. Dave wanted to know why. She said she wanted to go after those last few cancers cells lurking around in his body. Dave said he was worried about the Neutrophils going down. She said she was worried about it too, in fact everyone at the clinic was worried about him. I wanted to know how much lower Dave's counts could safely go. At that point, she said that he didn't have to have the Rituxan if he didn't want to - it was up to him. She said it could go either way, and she would be OK with whichever he decided. He asked her again about the Rituxan and what it was doing. Then he looked at me. I agreed that it was tempting to want to get those last cancer cells, but I also was concerned about his Neutropenia - I told him it was his decision. He said that he wanted to skip the Rituxan for today (later he told me that he had already made up his mind that he didn't want any more Rituxan and that he was relieved that she made it easy for him to refuse it.)

When she asked if we had any more questions, I wanted to know how we could get in touch with her. She gave us a new phone number - her case manager - and told us to call that number when we had questions.

The latest new plan: Give Dave's bone marrow a "rest." Check it with a bone marrow biopsy at the end of January. No more weekly blood draws - check it in two weeks, mainly to make sure the Hematocrit isn't falling too fast. Keep taking infection-avoidance precautions.

Onward

Dave's treatment continues . . . Rituxan infusions, weekly - he's getting infusion #3(of 6) as we speak. Plus he had 4 infusions in the months prior, for a total of 7 Rituxan infusions, so far. Neutrophils are improving slightly, but still waaaaaaay too low. He's feeling pretty good, in spite of everything. The doctor still has not responded to Dave's request for information.

Keeping it simple

Dave was scheduled for more Rituxan today, but he didn't go in for it. His Absolute Neutrophil count is 225 (last week was 429) and his Absolute Lymphocyte count is 630 (last week was 605.) He left messages for his doctor yesterday morning and again this morning expressing concern about his low white counts, but no one returned his calls. He also called the Oncology Clinic this morning and left a message saying he didn't want more treatment until he'd talked to someone. But we didn't hear anything until someone called to ask why he wasn't at his appointment.

A that point, the explanations given for his low white counts were, "don't know" and "it's the disease process." Nevertheless, Dave was strongly encouraged to come in for another Rituxan treatment, because "the doctor wants you to have it" and "it will help cure the disease and then the Neutrophils will recover." Right. This kind of vague, bullshit, baby-talk drives me absolutely nuts. It's taking all of my self control right now to not turn into a raving bitch.

Deep breath.

So now, we're headed back to the hospital tomorrow for another Rituxan treatment. Stay tuned.