Tuesday, July 18, 2006

MD Anderson Visit and Current Chemo Round

Hello all. I am sitting in a hotel room in Houston, only a few blocks from MD Anderson. However this time I am here for my work all week. I arrived on Sunday and will leave Friday afternoon. Doing OK, but struggling just a little. I never sleep that well the first few nights in a hotel and combining that with the Prednisone steroid I am on...well, you know the story. At least I am staying awake so far in class, although I did feel myself getting frustrated today with some of the comments from some of the students in class. I always get more sensitive on the drugs.

We drove down here to MD Anderson last week Tuesday afternoon as I had lab scheduled for 8 a.m. on Wednesday morning. We took the hotel shuttle over Wednesday morning and arrived at the fast track lab about 7:20. They have moved it to the other end of floor six over to the left coming out of the elevator and their time starts at 7:00. I registered and was taken almost immediately. Well, my doc appointment wasn't until 2 but we had already checked out of the hotel, so we went down to the lobby to wait. We were by the fish tank area and Cheryl started on a puzzle and I read the paper and helped her some with the puzzle (I get too frustrated to work too long on them), watched the fish, and wandered around some. We got to meet Jenny Lou's husband for too short a time. Jenny Lou is a member of ACOR, both are on the CLL Forum and they live in Austin. We have been trying to figure out a time to go out for dinner for months now. May happen soon. He had just driven in from the airport and he didn't have very long before his appointment. He looked really good and said he was feeling great after such a rough time dealing with his CLL. He promised we would all get together soon in Austin. Then he headed upstairs and we did too, as soon as Cheryl finished putting the 500 piece puzzle together -- she is good at it. We checked in about 1:20 hoping we might get in early, especially since there were not many people in the waiting room at all! Wrong. We were called into the back about 2:45 and saw his nurse who checked all the paperwork and gave us a copy of the blood tests from the morning. I will post them below. They were terrific. Then we waited and waited. About 45 minutes later, his PA came in and interviewed me and asked about my treatment, why we had started and why I hadn't done FCR as recommended last year. She wanted to know how Dr. Wierda could help me now. She left and we waited at least another half hour for Dr. Wierda to come in. He asked me all the same questions. Even though my oncologist sends him copies of all his notes, he hasn't seen them. Luckily I had copies with me (that also showed him as cc at the bottom). At first he sounded like he was upset that I had even started treatment, but I showed him that we had followed all the signs to start that he had given me last year -- absolute lymph doubling of less than six months as shown by several consecutive tests, nodes continuing to grow, platelets below 100, etc. He then was OK with that. However he was very disappointed that I didn't do FCR and wanted to know why. I told him it was my choice as I wanted to start with something less toxic. I also said that Dr. Hamblin seemed to agreed with me even though he does believe in FCR for certain cases. I told him I knew many people were fighting lung infections, sinus infections and other infections after FCR even though they were in remission (primarily due to the Fludarabine component of FCR). He said people get them all the time anyway, especially sinus infections, without CLL. I also told him because I had mono many times I didn't want to risk hurting the T cells yet and having that cause problems. He poo-pooed that too as he said 90% of people carry the EBV virus. I told him I knew that, but the folks that had full-blown mono were more at risk, especially for transition to a much more aggressive form. He really didn't respond to that. He said that folks who do FCR as first time treatment have a much better chance of remission and much longer remission. I asked him about the fact that nothing has shown any advantage for long term survival. He said that is only because the expensive studies have not been done yet. He is convinced that FCR will show much better long term survival and even some "cures" once long term, "expensive" studies are started and completed. I mentioned how so many of the CLL experts even disagree on proper treatment in many cases and mentioned David Arenson (see his blog link over on the right) who had just completed a trip around the country consulting with many CLL experts who all had a different opinion for his treatment. He acknowledged there was often not a consensus and that he sometimes disagrees with his colleague, Dr. Keating. What can I say. He is totally sold on FCR (as is Dr. Keating). Anyway, he said since I have started down the path I chose, I needed to complete it. He suggested a bone marrow biopsy (BMB) in August. He also said I should consider a one month Campath mop up if the BMB indicated 30% or more of involvement and then another month after if needed. He did warn me that Campath is even more toxic than fludarabine. That really bothers me too. He wants me to come back before starting another full blown treatment to see what clinical trials might be going on then. He mentioned one that might start within a year with a drug I have not heard of and can't remember now. It starts with the letter O but that is all I can remember.

We ended up leaving Houston during rush hour and got home around 9:30 p.m. and then off to my local doctor and chemo the next morning.

All in all I am not sure what I got out of the Houston trip, other than an "I told you so" from Cheryl and another "I told you so" from my local doctor the next day. In fact my local doctor was concerned that I made it clear that it was my choice and not his not to do the FCR. He said he didn't want Dr Wierda to think he was some hick and wouldn't refer anyone else to him. SIGH. So all in all, I felt a little beat up. It will be much harder to follow my own path in the future.

Thursday's 8th round (and I hope last round for a long time) of chemo went fine. I did the benadryl by pill instead of infusion and thus avoided the very annoying restless leg syndrome. I also slept through most of it again. Then slept some more when I got home. And, amazingly, slept for 5 1/2 hours that night! I have never gotten more than one hour's sleep the first night before. Then the next night another six hours sleep!

I go for blood work again next week and see my local doc in a month. He is planning to do the bone marrow biopsy later in August and he really wants to do a PET Scan this time, too. He said it will tell him if the swollen nodes in my chest, stomach and groin are active or not. At least he wasn't thrilled with the Campath mop up approach either. I guess we will wait and see what the bone marrow biopsy says and I will do some more research, too.

Anyway, here are only the highlights from the blood test at MD Anderson as there were 48 separate things reported. I will post the things we usually look for and anything that was either high or low. Strangely, this report doesn't show what their normal range is. It only stated H for high or L for low.

White blood cell count 4.7
Red blood cell count 4.13 L
Hemoglobin 14.3
Hematocrit 40.1
Mean corpuscular HGB 34.6 H
Platelet count 126 L (but up from 81 two weeks ago)
Chloride serum 110 H
Glucose 184 H (that's my diabetes messed up and it was nearly 400 at one point today even after insulin, but that is the steroid effect.)
Eosinophil percent 5.0 H
Metamyelocyte percent 1.0 H
Anisocytosis Occasnl (red cells of unequal size)
Poikilocytosis Occasnl (red cells of abnormal shape)
Neutrophil absolute count 2.30 (first time in normal range in a long time)
Neutrophil percent 49.0
Lymphocyte absolute count 1.88
Lymphocyte percent 40.0
B2 Microglobulin, serum 1.6
Immunoglobulin IgG 465 L
Immunoglobulin IgA 70 L
Immunoglobulin IgM 21 L

As I said above, I am really pleased with this and feel like I have gotten a very good partial response. Even though it looks like a lot of red, most are only a very little off normal -- but then again, I am a little off normal myself, so I guess it fits well!

As usual, thank you so much for your support and especially your prayers.


Karen said...

How sad is it that I'm actually jealous of your too-low protein levels! :) Maybe I could give you some of my extra protein so we could both balance out!

Paula and said...

John: Oh my! It is hard to know what to think about all the conflict about treatment choices. We just pray that all is going to go well, and you can say "I told you so!" I checked your blog every day last week, and so I am glad to have this word now. Take care and God bless you. Our love to both you and Cheryl.

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Bill said...

Got to say that from everything you are saying about Doc Wierda, I'd dump him in a heartbeat. (Hard to tell if he is as rude as he sounds from your retelling.) Nothing worse than a Doctor with a god complex. They don't have all the answers and there is nothing more important than being in touch with your own body, your own informed choices and doing what is right for YOU based on advice...not ridicule. I know you'd never catch me going back to Wierda! (Even if he changed his name!) Bottom line - you're feeling better, you're doing better, you're "numbers" are good, who needs Doctor Downer who thinks he has all the answers?

Anonymous said...

Wow - just caught up on all your blogging. Remember that there are 8 more of us out there that are totally affected by YOUR choices in the course of treatment.