Treating the Symptoms

Yesterday (Tuesday) was exhausting (for both of us.) A nurse at the infusion clinic called at 8:30am and told Dave to come down right away for some blood. We were both up, dressed, done with breakfast, and waiting for the call. But due to transportation problems, we didn't get there until 10:30am. Which means, the blood didn't actually get started until nearly noon. Which means, it didn't finish until almost 3pm. Which means, we got home about 4pm (later for me, since I had some errands to finish.)

Dave was so weak, he was barely upright. When the infusion nurse saw him, she said, "Hmm, you do look a bit pasty - do you need to lay down?" Luckily, he was able to spend most of the day in a soft chair with his head back and his feet elevated, dozing off & on. After he got settled at the infusion clinic, I took off to look for soft bland foods that would not hurt his mouth or stomach but would provide him with some electrolytes and protein. Plus it had to be low fat, and vegan. And I had to find some pain meds and other odds & ends, from several different sources. It was a challenge, but I think we're stocked up pretty well, now.

Dave is finally reaching the threshold of his needle-stick tolerance. He's been stuck 15 to 18 times per month for the last 6 months and at least 3 of those times each month he gets IV chemo through that vein. He's had more hematomas on his arms than we can count, and the pain is getting worse. He's starting to have nightmares about needlesticks.

He's spending today in bed. He's still weak, lethargic, and got a killer headache. He actually looks feverish, but he doesn't have a fever. He might have a sinus infection. He might be having a mild blood reaction. It's hard to tell what's going on - with a trashed immune system, the usual signs don't apply. So for now, we're just treating the symptoms.

Well, that answers that question

We finally got the lab results back from this morning's blood draw, and it's:
RBC 1.47
Hgb 5.0
Hct 14.5
Platelets 58
WBC 0.5
Neut 7%
Lymph 92%

. . . so I assume we'll be heading to the hospital tomorrow for some more transfusions.

AIHA and Chemo

... not a happy combo. Dave's been up, down, and all around since my last post. At the moment, he's feeling pretty miserable. His mouth is full of ulcers (probably from the chemo,) he's having stomach/abdominal distress (of unknown origin,) he's having tremors and cramps (electrolyte imbalance, due to multiple issues) and he's weak & breathless. I'm guessing his Hematocrit is lower than it's ever been (the lowest so far was 18.)

I took him to the hospital for a blood draw this morning, and we left a message for the doc this afternoon, but we haven't heard anything yet. We're both assuming he'll get another transfusion tomorrow, but we're still waiting for the word . . .

Good News

Sun coming up, under the fog - 41st & Judah at 7am.

The doctor gave us some good news today. Dave's hematocrit is 24 - first time it's been over 20 in about 5 weeks. It's not dropping as fast as it was a few weeks ago. Also, his white count is not rising as fast, between chemo infusions, as it was a few months ago. And he gained 2 pounds this time, instead of losing (he's lost 35 pounds since this thing began.) So the doc feels like we're making progress against the CLL and the AHA.

She's dropping the dose on the Prednisone (from 40 to 20 mg a day.) He'll continue with his previously scheduled infusions of Fludarabine, Mitoxantrone and Rituxan this month and next month. We'd never discussed treatment beyond that point, but Dave has been hoping for a remission (and no more treatment) at the end of six months. So when Dave asked her what happens after next month's infusion, and she said she wanted to continue the Rituxan, and weekly blood counts, I thought he was going to be disappointed. Especially when he asked her, "For how long?" and she said for 2 years!

As we were leaving the hospital, I asked him if he was OK with continuing the Rituxan infusions for 2 years, and he said, "Fuck, YEAH, I'm OK with that - it means she thinks I'm going to live for two years!"

More Blood

Dave had another transfusion on Friday (two units of Packed Red Blood Cells.) This is his second transfusion and it was much easier for him. He still hates the Benadryl they give before the infusion, because it makes him feel groggy for the rest of the day. And he's not too crazy about spending hours sitting in the infusion clinic, hooked up to an IV. But otherwise, it's not too bad. We had a great weekend - went out to eat three days in a row, and did a little walking on Saturday & Sunday. Now the big question is, how long will this boost last?

Dave's Hematocrit didn't drop quite as fast, this last week, as it did during the previous few weeks. But he's taking a lot of steroids, and he's starting to get hand tremors, so he's hoping to cut back on the Prednisone as soon as possible. Mostly he's annoyed about the fact that the tremors affect his shooting - he used to be rock-steady at really slow shutter speeds and he rarely used tripods. Now's he's having to make adjustments.

This upcoming week is Chemo Week #5. We see the doctor on Tuesday (more bloodwork on Monday) so we're hoping for a serious evaluation of Dave's condition and response to treatment.

New CLL Info

Thanks to Chaya Venkat's excellent advocacy, four CLL experts have posted answers to her questions about stem cell transplants as treatment/cure for CLL. It's too soon for Dave to be pursuing this option, but not too soon to be thinking about & planning for it. Although whenever I mention it to him, he dismisses it with, "They almost never work."

Regarding the question of outcome for this procedure, Dr. Andrew Pettitt wrote:

There are essentially three possible outcomes following allografting: (1) the disease is cured; (2) the disease is not cured but the patient survives the procedure; and (3) the procedure itself is fatal. It is always difficult to assign each of these outcomes with a precise probability value. However, taking an ‘average’ CLL patient (of course there is no such thing) who is in a reasonable remission (whatever this means), I find it helpful to think in terms of a ‘rule of fifths’, i.e. there is a 3-in-5 chance of the transplant working, a 1-in-5 chance of the disease relapsing, and a 1-in-5 chance of the transplant shortening the patient’s life due to complications. These figures are only crude approximations of the available data but nevertheless give patients and their families something simple and tangible to chew over. ... Another extremely important issue to be factored into the equation is that, irrespective of the final outcome, the procedure is very likely to have a negative impact on quality of life for a year or more owing to frequent hospital attendances and the problems associated with graft-versus-host disease (GVHD) and infection.

And Dr. Terry Hamblin wrote:

What makes CLL so much worse than other conditions for which mini-allografts are performed is how immunosuppressed the patients are before the transplant. Patients with CLL are immunodeficient from the start in a way that patients with say, MDS are not. Fludarabine, (the drug that that Dave has been getting - Anna) is extremely immunosuppressive, producing AIDS-like levels of CD4+ cells for around 2 years. If the patient has been previously exposed to CMV or EBV (which Dave has - Anna) the reactivation of one of these herpes viruses is on the cards. Most guidelines have suggested that allografting should be reserved for patients refractory to fludarabine containing regimens or those who relapse within one year. This seemed like good advice at the time, since the risks of transplant in CLL are so great that one would not want to expose a patient to them if there was a reasonable chance of prolonged good quality life on immunochemotherapy alone. Remember that before mini-allo's, allografts in CLL carried a treatment related mortality of 40%. It had been hoped that mini-allo's would reduce this, but on what has been revealed so far, this has not been the case.

I Guess It was Inevitable

I've still got fading symptoms of a mild flu, but in spite of my efforts not to spread it to Dave, I think he's coming down with it now. He's also suffering from mouth ulcers and mild digestive problems . . . otherwise, things are OK around here.

He's scheduled for more labwork tomorrow and another round of chemo next week.

Go Figure

Dave was at the hospital today, getting a follow-up blood test, to see how many of those new red blood cells are still hanging around. He's not as pale or short of breath, as he was before the transfusion, but he is having significant fatigue. So we're curious to see what the bloodwork shows (we'll know tomorrow, maybe.)

While we were there, he also tried to fill another prescription for Famciclovir. Remember the problem he had last time? Different aggravation this time. I'll let Dave explain it to you: