Sunday, January 31, 2010
It was delicious, but the really wonderful part was that we didn't even make it ourselves. Some friends made it for us and delivered it to us. We've known these folks for a long time; one of their sons is a classmate and teammate of Peter. They knew we were having a rough week last week, with Peter's broken finger, Isabel's mom's broken shoulder, and my starting treatment all piling up within a few days. So they aksed if they could make us dinner.
At first, we resisted, to be honest. We know the ritual of making dinner for people who are going through rough patches, especially illness. We've done it for others. But we really didn't need someone to make dinner. Easy enough to order pizza -- we do that often enough on a weekend night. But we also know that this isn't just about the food. It's about making a connection. And we really appreciate that.
I've read articles about therapists asking cancer patients to think about the good things that can come about from having cancer. That's not an easy thing, when you're in the middle of it. But then cancer patients realize that, well, "having cancer has finally gotten me to stop smoking," or maybe "it's gotten me to appreciate how hard my mom has always worked."
For us, the whole cancer thing has made us realize how blessed we are to have so much support, not just from family, which hasn't been surprising, but from the friends we've made here. Not having family immediately close by (especially when we know so many people who do) is hard sometimes. And at time's we've felt a little isolated. We have plenty of friends, and nearly all of them have kids, the same age as ours, maybe some a little older or younger. But that also means they're mostly in the same kind of situation as us -- busy as heck, and so we don't get together as often as we'd like. And so it's been easy to forget about the connections we've made with other people here over twelve years.
And then we have a week like we had, and we realize that those connections are still there. The good folks who made us dinner weren't the only ones who have offered -- they were just the ones who were most insistent, and who wouldn't take No for an answer. (For those others who have offered -- please don't take it personally. We hope that we won't have to call on you, but we know we can, and that feels great.)
When Isabel was being pulled in three directions -- being with her mom, being with Peter for surgery, and being with me for my second treatment -- we had four people volunteer to drive me to the doctor and sit with me for four hours. That was a great comfort. And that doesn't even include my mom and my brother, who have also volunteered.
So we had a wonderful dinner last night. Besides the cacciatore, rice, and veggies, it also came with a vase of flowers, a chocolate cake, a list of ingredients to show what was safe for our food-allergic son, and (because the cake wasn't safe) a large jar of Skittles and Swedish Fish, because those things are safe, and they're his favorites, and our friends took the time to find that out.
So, cancer, on the whole, pretty much sucks, but there's a whole lot of good that shines through -- so brightly that you don't even need to go looking for it on your own.
Friday, January 29, 2010
Dr. R's office was a bit on edge today. The receptionist seemed frazzled. No witty banter with the nice woman who took my blood, who wasn't even playing the classic R & B radio station she usually has on. And then the nurse who took my vitals saw Dr. R stroll past the exam room, and whispered to me, "I'd like to strangle him!" while mimicking the activity with her stethoscope. I was a little taken aback, because Dr. R is such a sweetheart. She told me, "He was in early today, and she's just been sitting around, so when he sees one of his patients, he rushes us to get finished." Then she rushed through taking my blood pressure, pulse, blood oxygen, and temperature, and thanked me for listening as she hustled me to another exam room.
We had the potential for a difficult day....
But when I saw Dr. R a minute later, he was in a happy mood. Just anxious to see me, I guess, even though no one else was in quite as enthusiastic a mood. (Strange how a doctor's office can be so different at a different day and time. I almost always have appointments with him on Tuesdays at 1:30 in the afternoon; this Friday morning stuff is a whole different world.)
Dr. R said my blood work was "solid," which is a good thing, of course. Had my blood counts changed for the worse, it would be a sign that the Rituxan isn't working. But they're still within the normal range that they have always been.
He asked me if I'd been feeling any different. I told him that I though the Rituxan was working, and mentioned a couple of physical signs, apart from the size of the nodes, that I'd been noticing that seemed to indicate that things were working. He said that was a good, but that he was going to wait until next week to do a full physical examination of my lower abdomen. Basically, the Rituxan is about a week behind schedule, so this, my third week, would just begin to show signs of my second infusion. He says it's still early to look and decide if it's working after just two weeks. I'm OK with that -- I don't want to look at it and say "Nothing seems to be happening," and get discouraged, and neither does he. Waiting until next week will give us a more accurate assessment.
There's a whole lot of waiting involved with this lymphoma, isn't there? I've been waiting for two years. Seven more days won't be that tough.
I asked about extending the treatment to 6 or 8 rounds, as he suggested might be a possibility. He said we'd evaluate that next week, too. If it seems to be working, we'll extend to 6, and possibly 8. If it's not working, we'll stop at 4. It's rare to go beyond 8, since Rituxan's only real long-term (but reversible) side effect is a slightly lower immunity, because it targets normal B-cell lymphocytes as well as cancerous ones. Stopping gives the immune system a chance to recover.
I asked about Rituxan maintenance as well. R-maintenance involves extending the Rituxan treatment if it has been successful: in six months, I'd have 4 more rounds, and then repeat that again two more times in six-month intervals. As he said (and which I knew), there is some evidence that Rituxan maintenance is effective if the initial treatment has been successful. We have some time to decide that, obviously, but I wanted to get a sense of what he felt about the idea.
After an abbreviated exam, I was off to the treatment room.
It's probably in poor taste to say a treatment room is "dead," but I was the only patient in there until about noon.
For the third straight week, I wore my lucky Jon Lester Red Sox shirt, but today I had my BU hockey jersey over it. One of the nurses saw it and signaled to me from inside the nurses station and said "BU!" and gave a cheer. I figured she wasn't a grad, since they closed their nursing school a while ago. Turns out her sister and brother-in-law went to BU, where he was equipment manager for the hockey team. She told me he taught his five-year-old son to say "BC sucks The Big One!" I told her I was kicked out a BU/BC hockey game for saying something similar about BC players, which is true. But that's another story for another blog.
The infusion itself went fine. Tylenol and Benedryl beforehand. The nurse said that next week, they may give me Benedryl pills, rather than the drip, which will make me "a little less loopy." I slept for an hour or so after I got the Benedryl, but that was all. When I got home, I slept for another hour, and I'm still a little groggy, but otherwise OK.
So next Friday, I hope to have more to report, on how the Rituxan has been working, and where we'll be going from here. But it at least seems to be going well.
Wednesday, January 27, 2010
Cancer researchers have been focusing for a while on genetics, and the mapping of the human genome a few years ago has made this kind of research much easier. It's important because once researchers understand which genes are mutated, they can target treatments toward specific cancer cells and leave other healthy cells alone.
The researchers found that genes from cells for two types of lymphoma (Follicular, the most common indolent lymphoma, and Diffuse Large B-Cell, the most common type of aggressive lymphoma) both have the same gene mutation. They found the mutation in a gene that is labeled EZH2.
Apparently, gene mutations are usually found in lots of different genes. No one had noticed before that this particular gene has been involved in lymphoma (though it has been implicated in breast cancer and prostate cancer), or that the exact same gene is involved in so many patients.
The upside is that this may lead to new and improved, targeted treatments for fNHL. The discovery itself is major news. Not much more to say, other than "We found it!" And, of course, there won't be any new treatments in the very near future. But given what researchers have been able to develop from similar discoveries, it's a cause for optimism.
Monday, January 25, 2010
"That’s Cancertainment!: 25 Great Songs, Books, Films, Albums, and TV Shows in which Cancer Plays a Major Role," from the website AVclub.com. Pretty interesting list. I've seen/heard/experienced a lot of them.
Frankly, though, I'm not in much of a mood to catch up on those that I haven't. Too stressful a week. Even the funny ones -- like the Tom Green Cancer Special or the episode of The Office -- don't hold much appeal.
That said, things are looking up. Isabel's mom has begun rehabbing her shoulder, which will be tough, but it's a step forward. Peter had his follow-up this morning for his broken finger, and the doctor said it looks good. He has a permanent cast on now (he chose black, and picked up gold and silver sharpies for people to sign with). He's in good spirits. And I continue to tolerate the Rituxan well. So we have reason to be positive all around. Sometimes that's hard, especially when things pile up all at once.
So in the spirit if being positive, I'm going to suggest that instead of looking at the "Cancertainment" link above, you watch this video instead: the song "Swim" by the band Jack's Mannequin. Their lead singer, Andrew McMahon, is a leukemia survivor, which makes the song all that much more poignant. If you need some inspiration to keep on, it's a good choice. (Thanks to Tom for sending me the link a while ago.)
Today is Bubble Wrap appreciation day, because Bubble Wrap celebrates its 50th anniversary this month.
What better way to relieve stress than to pop some?
What -- don't have any?
You don't need any. It's 2010, for cryin' out loud. (Click on "manic mode," and you won't need to click your mouse -- just run your cursor over it. Much more satisfying.)
Friday, January 22, 2010
1) We got a call Tuesday morning from the school nurse; Peter hurt his finger playing basketball in gym class -- the right pinky. I'll skip the full details of the day, but an x-ray revealed that it was broken. He saw an orthopedist Wednesday morning, who confirmed it was broken, and said he'd need surgery, which he had this morning. The doc put in a couple of pins to help set the bone. He's in a temporary full hand cast and sling until next week, when he'll get a new (and we hope smaller) cast. That will stay on for 5 weeks, and then he may need a splint for a while after that.
This means that his basketball season is over, and it's unlikely he'll play piano in the Connecticut Young Musicians Festival in March. Plus, he'll miss his audition tomorrow for All-State Jazz Band, which he had a real shot at making.
The optimistic view of his music setbacks: he's got another year to audition for Jazz Band, and because he held such a high chair in the Symphomic Band last year, they'll reserve a seat for him this year without his having to audition, so he may still be able to play the concerts at Lincoln Center in NYC and at the Old State House in Hartford later in the spring.
Overall, he's in good spirits, though he's been home for two hours and he's already saying he's bored.
2) As Isabel was driving Peter home from the radiology place on Tuesday, she got a call that her mom had slipped on ice that morning and had broken her shoulder. Again, I'll skip the details, but she had surgery on Thursday afternoon, and it went well. She's got some rehab and physical therapy ahead of her, but reports from Maryland are that she's doing OK.
Keep her in your thoughts. And, as always, keep the caretakers in your thoughts, too. Isabel has been comforted with the knowledge that her sister, niece, and a couple of brothers are close by to help out, but she's still been very stressed out with the Trifecta she got this week. Because, of course...
3) I had my second round of Rituxan this morning. Naturally, Peter's surgery was scheduled for this morning, so Isabel was with him, and my mom came down to take me to the oncologist. (As much as she would love the ability, Isabel just couldn't be in three places at once -- a hospital in Maryland, a hospital in New Haven, and a doctor's office in Orange. Elastigirl from The Incredibles is her idol.)
This week's Rituxan infusion was much less interesting than last week's. It took about three hours altogether (2 less than the first round), with no reactions at all. In fact, the combination of the Benedryl and a lack of sleep this week pretty much knocked me out. I think I was awake for maybe an hour of the three hours that I was there. And I'm still tired.
Isabel's big decision, now that her mother, husband, and first-born all seem to be doing OK, is whether or not to nap first and then get drunk, or the reverse. As I look to my right, I see her asleep on the couch, so I guess that decision has been made. Once she gets John and Catherine from school, however, I'm guessing she'll move on to part 2.
Spread your positive thoughts and prayers around this week.
Tuesday, January 19, 2010
If you're new to Lympho Bob, or you've started reading again after an absence, then you should know that I'm a cancer research geek, and I like to provide links to new lymphoma research here. Family and friends seem to like to hear about new developments, because it gives them hope, and my fellow fNHLers who have found the blog seem to like being up-to-date on potential options.
I get these links from a couple of Facebook groups, from postings to my support group, and through my own research. Recently, someone in the support group posted an article from the journal The Oncologist from a year or so ago, called "Radiolabeled and Native Antibodies and the Prospect of Cure of Follicular Lymphoma." The full article is available here.
It's on the technical side, written for oncologists, but it was worth wading through. The article is a review of research on fNHL, looking especially at Rituxan and RadioImmunoTherapy (RIT -- Zevalin and Bexxar); those are the Radiolabeled (RIT) and Native (Rituxan) antibodies mentioned in the title. The basic conclusion of the article is that a combination of Rituxan (or some other native antibody), Zevalin or Bexxar, and some chemotherapy is probably the best currently available way to treat Follicular NHL. The big HOWEVER here is that the authors are speculating, based on previous research -- this isn't a report of new research. It amounts to a kind of "best practices" summary.
Rituxan, they say, has done wonders for the treatment of fNHL (which we already knew). And RIT has also been fantastic. What's great is that they work in two different ways. Combine either of them with chemo, which works in a third different way, and the results are even better. So maybe combining all three together in some way (Rituxan with the chemo, then conditioning with Rituxan before RIT) might the best shot we have at a cure, or at least a long-term remission for fNHL.
More importantly, both native antibodies and radiolabeled antibodies could fairly easily be improved. Rituxan is great, but fully-humanized antibodies (no more mouse fantasies!), or antibodies that target proteins besides CD-20, might mean even greater success. And RIT could be improved by playing with the ways the radioactivity is released (that's the real technical part of the article) and then giving repeat applications of it. Combine those improvements with chemo, and you have an even better chance at cure/long-term remission.
Or so they speculate.
A very interesting idea, and one that doesn't even consider the ways other improvements might help (like genetic testing helping to determine which of the chemo options might be best). Certainly something worth considering for an fNHL patient who is taking Rituxan and might be moving on the CVP, and who has an obsession with radiolabeled antibodies.....
Saturday, January 16, 2010
As much as I wish I had a picture of me in the treatment room, having an allergic reaction to Rituxan, trying to stave off chills with my Snuggy, fantasizing about my wife dressed like Minnie Mouse -- I don't have one.
But here's a re-creation:
You're welcome, Coco.....
(And thanks, Isabel, for putting up with me.)
Friday, January 15, 2010
I got there about 9:25 for my 9:30 appointment. It's very rare that I'm not called in immediately, and by 9:50, I was getting anxious. I wanted to get started.
I had brought a laptop and a couple of movies -- Fanboys and Run, Fatboy, Run -- both fairly light comedies. I also brought a book, Bringing Down the House, which was made into the movie 21, about some MIT kids who count cards while playing blackjack in Vegas and making lots of money. Again, reasonably light. I held off on bringing any snacks, because I really didn't know what to expect, and I was trying to be conscious of other patients who might not do well with strong smells. (Which killed the whole idea of the provolone-stuffed olives that I had planned to bring.)
I wore my Jon Lester Red Sox t-shirt for good luck.
When they finally took me in, I saw Dr. R, who went over the procedure with me again and did a physical exam. He sent me off to the treatment room, and Isabel picked out a nice comfy chair for me. I had to sit directly in front of the nurses station in case there were any problems. (I can hide in a corner next time and watch my PG-13 movies in peace.)
The nurse was very nice. She gave me my pre-medication -- some Tylenol and a bag of Benedryl. The Benedryl, she said, would likely put me to sleep, and that I should just go with it and take a nap. I tried to do just that, but I couldn't get comfortable, and when I closed my eyes, I saw visions of really fast things rushing past me on either side. It wasn't pleasant. I kind of drifted a little for the half hour I was getting the Benedryl, but I never really slept. (Sorry, Lori. I know you wanted to have a vicarious nap through me.)
After the Benedryl, we started on the Rituxan. At that point, it was about 10:45. She gave me a small bag of it, and the drip was really slow. Everything went fine. I was still a little groggy from the Benedryl, and I asked the nurse to turn on the TV. I don't want to sound insensitive, but CNN's coverage of the Haiti disaster really wasn't what I needed. I drifted a little more, tried to read a magazine, and eventually had her turn the channel to Comedy Central.
By about 11:30, we were ready for a new bag of Rituxan. Still a little one, but she sped up the drip rate. Isabel ran to the deli across the street to get us some sandwiches. I ate half my turkey, and I was starting to feel a little funny. A little chilly, maybe. Afer a couple of minutes, it was getting worse, so I signaled to the nurse. She stopped the Rituxan and put me on saline. The chills got a little worse still.
There was only one prescription for that -- my new leopard-print Snuggy! (Thanks to my brother and sister-in-law for the Snuggy, and to my niece for picking out the leopard print.)
The Snuggy did help a little, but it was an allergic-reaction more than a chill. Dr. R popped in, and they gave me a steroid injection, which calmed it all down after a few minutes. They kept me off the Rituxan for another half hour to see if the steroid would do its thing.
When the nurse came back to see if we could restart the Rituxan, she asked me how I felt, and I told her I was fine. "Should we start again? she asked.
"Let's do it," I said, and took my left hand out from under the Snuggy so we could do an inspirational fist bump.
"Oh, good," she said, grabbing my wrist. "I wanted to check this," and she looked at the IV line in the back of my hand.
"No!" I said, still holding up my fist. "I can't believe you left me hanging!"
"I know what you wanted," she said," but I need to check this." She did, eventually, punch it, but the moment was frankly gone at that point.
We started up the Rituxan again, and the steroid did its job. No more chills or shakes.
Things went smoothly from there. I watched Comedy Central, and the nurses took turns coming out to see what I was laughing at. They apparantly don't get a lot of laughter in the treatment room.
I had one more reaction a little while later: an itchy rash on the left side of my lower abdomen and upper thigh -- right were I'm having the swelling and the problematic nodes. I don't know if that's a good thing, because it's working, or a bad thing because it means my body is resisting, or maybe just a coincidence (which seems pretty unlikely.) I told the nurse about it, who told Dr. R, who wasn't too concerned. We let it go until/unless it got worse, but it never did.
The other people getting treatment started to clear out by about 2:00, so we chatted with the nurses about dogs and kids and the Red Sox.
After the steroid injection, things went much more quickly. She started using larger bags and really speeding up the drip rate.
By about 2:45, she put the last bag on and said we should be done by about 3:30. That was pretty accurate.
Overall, not too eventful. The mice antibodies in the Rituxan did cause a couple of reactions, but they were manageable. The only other side effect was, as I was having those chills, I tried to think about something happy, and what came to mind was a fantasy involving Isabel dressed like Minnie Mouse.
The nursed said that next week, she'll do the steroid as part of the pre-meds, and there's a good chance I'll be done by lunch, since they can start at a fast rate right from the start.
Thank you all for your happy thoughts and prayers. Things look good.
Thursday, January 14, 2010
It's also my 2nd Diagnosaversary -- two years to the day that I was diagnosed with NHL.
A few weeks ago, I had the whole thing timed perfectly. I was planning on celebrating my two years by posting my 300th Lympho Bob blog entry. Seemed like two milestones worth celebrating together.
I hadn't quite figured out what, exactly, I was going to say for #300, but I had some rough plans. I had recently watched the movie 300, and that gave me a little inspiration. If you haven't seen 300, it's based on a graphic novel by Frank Miller that describes an event from ancient history. It's about King Leonidas of Sparta, who takes 299 of his men to stop King Xerxes of Persia and his 100,000 or so soldiers from coming to Sparta and taking over all of Greece. It's one of those movies that Isabel won't watch with me -- too much blood and gore from the battles, and everybody looks and talks like a professional wrestler.
One scene in particular was going to make it into the 300th blog entry. A messanger from Xerxes arrives at Sparta and announces to Leonidas that Xerxes is coming, and demands Leonidas bow down to him. The Spartan king takes offense, and forces the messanger and those accompanying him to the edge of a deep pit. "This is madness!" says the messenger. Leonidas responds, "THIS...IS...SPARTA!" and kicks him into the pit. (You can see the clip here.)
My plan was to somehow re-edit the clip to have the messenger say something like, "But I am lymphoma!" and then have Leonidas say something in response and kick him into the pit. I had planned to spend a few hours this past week figuring out what to say and how to dub it. Alas -- my mind has been elsewhere.
Still, I like the whole scenario, even if I'm not going to do it. It mirrors the kind of defiance I've been feeling lately.
Last year on January 15th, Isabel and I celebrated my first diagnosaversary by playing hooky and seeing a 12:00 noon movie. We even smuggled a couple of Subway sandwhiches into the theater, breaking the "no outside food" rule that's posted right on the front door.
A couple of rebels -- that's us.
We did it again yesterday. We were even more rebellious this time, though; last year, we got cold turkey subs so the theater goons couldn't smell them. This year, when the Subway people asked if we wanted them toasted, we said Yes.
We saw Up in the Air, which we really enjoyed....right up until the school nurse called with 20 minutes left in the movie. Catherine had slammed her nose into some kid's head at recess. It was bruised and bleeding just a bit, and the school nurse thought we should take her to the pediatrician. So we left the movie and ran to school and then the doctor's office. (Catherine is fine, by the way -- it wasn't nearly as bad as the nurse made it sound on the phone, and this morning, she has only a faint bruise on the side of her nose.)
So much for our Day of Rebellion.
As we were driving home from the pediatrician (after a stop at Dunkin' Donuts for a giant chocolate chip cookie for the little patient), something occured to me. I kind of figured out the meaning of that dream that involved treatment, my workplace, and a heroine-dealing, FBI informant Sopranos character.
Last Tuesday, after I found out that I'd be starting treatment, we went home, got the kids from school at 3:00, told the kids what was going on, got them started on homework, and then I wrote to my support group about the treatment decision. I had about 10 minutes before Catherine and I needed to head out to our music lessons at 4:00, so I made it a quick note to the group. That note turned out to be the 300th posting I had made to the group, according to the stats next to my name and picture. I described the doctor's visit, and then ended the post with "I'm off to a guitar lesson -- life goes on."
That's what the dream means. All of that stuff -- my satisfying work life, friends from various parts of my world, caring for children, the little things that give me pleasure -- all of that is mixed in with my being a cancer patient. It's a part of me -- but it isn't ALL of me. And if dreams mirror life, doesn't it make sense that my Grand Defiant Gesture gets interrupted by the real world? How could it have not ended that way?
I don't know what the day will bring tomorrow, or what things will be like in a month, but life does go on, and it will. And I plan on it being a long one.
Tuesday, January 12, 2010
I'm used to "teaching dreams" -- I have them all the time, and I'm sure I'll be getting some of them very soon, as the start of the semester approaches. But this was the first dream I've had that involved getting a cancer treatment.
At the start of the dream, I was in the treatment room, waiting to begin treatment. It was smaller than I remembered. It looked like I was the only one there, and I was happy to have the room to myself. All of the big comfy chairs lined the wall, except one, which faced the others. I could see that chair had its own TV, so I thought I'd take that one so I'd have a TV to myself.
But then the door opened, and about five other patients came in. They all seemed to know each other, like maybe they'd all come from the cafeteria together. In the confusion, someone else sat in that chair that I had chosen. It turned out to be Sal "Big Pussy" Bonpensiero from The Sopranos. He turned the chair around and pushed it back so that when he reclined, he was pretty much in my lap. But given who he was, I felt like I couldn't really say anything about it.
The nurses came in and started working on people at the other side of the room, so I figured I had some time before they got to me. I thought I'd slip out and go down the hall to the Study Abroad Office, since one of my students was apparently interested in studying in England. I left the tretament room, and saw that the building was a combination of a university building and a hospital. I was a little confused about which direction to go to get to Study Abroad, but I figured it out, walking past my friend Ilene as she stood outside her office.
As I approached the Study Abroad office, I could see I was in the right place because I recognized the four year old girl playing there as the daughter of our friend Heather, who runs the day care center at our church. Apparently, in my dream, she's now running the university's Study Abroad Office. I could see that Heather was busy talking to someone, so I thought I'd just slip in and see if the 4 year old could help me find a brochure with a British flag on it. But Heather saw me and we chatted a little bit. She asked me which department I was in, and I didn't know if she meant my academic department or my medical department, so I said "oncology" after a second. She said she didn't know I had cancer.
I went back through the maze of hallways to the treatment room, passing my friend Cindy along the way; she was throwing white powder on top of a large spill or leak. When I got to the treatment room, I looked up at the clock and realized it was 7:30 at night. I panicked -- I told everyone that this was going to be an all-DAY affair, not an all-NIGHT thing.
That's when I woke up.
I told Isabel about it, and we were both fascinated by the mix of elements in dream, covering my medical life, professional life, personal life, and even my TV viewing habits. (Though if I had my choice, it would have been Paulie Walnuts who came to see me -- he actually had cancer on the show.)
I have these kind of dreams about teaching, as I said, where everything seems fine for a while, but then they always end with my classroom breaking down completely into chaos. Since that almost never happens in real life, I'm going to assume that everything will be OK on Friday, too, and the dream is just a way of letting off a little psychic steam.
Though, if Mr. Bonpensiero shows up, he can have any damn chair he wants....
Monday, January 11, 2010
Unlike chemotherapy, Rituxan doesn't seem to have too many harsh side effects, short- and long-term. Chemo works because it targets fast-growing cells; since cancer cells typically grow faster than regular cells, they tend to take up the chemo before most healthy cells do. But other normal fast-growing cells also get hit hard -- hair cells, for example, and the lining of the mouth.
Rituxan is not a chemo treatment, so those kind of typical side effects (like hair loss) aren't an issue. Most of Rituxan's side effects come from its partially-human (and partially mouse) nature.
Much like a food allergy (which we know something about around here), the body treats Rituxan as something thast doesn't belong, and behaves accordingly, releasing histamine or other mediators that allow the body to fight off what it perceives as an invader. (Histamine causes inflammation, for example, because it dialtes blood vessels to allow white blood cells to get to the invader that much quicker.) So many patients (really, most patients) who take Rituxan have an allergic reaction. Rituxin is an invader -- it doesn't belong there naturally. Typical side effects during the infusion are things like itching, nausea, hives, fever, and chills. And they usually stop once the infusion stops. (Longer-term side effects are much less common.)
The solution, as with any allergic reaction, is to give an antihistamine (like Benadryl) during the infusion. But this will slow down the whole process, especially for the first infusion.
I'll have my treatments right at the doctor's office, where they have a treatment room. I was told to plan for a full day on Friday. I'll get there by 9:30 and have some blood taken. Then I'll go to the treatment room, pick a nice chair (I was told to try to get one in front of a TV), and settle in. I'll probablly get some Tylenol, and maybe a steroid. The amount of Rituxan I'll receive depends on body weight; this means, unfortunately, that I'm going to get a whole lot of Rituxan, which is going to add to the time I'm sitting there.
Nurses will be watching me te whole time, looking for signs of a reaction, and listening for me to tell them that I'm feeling anything abnormal. If (when?) I do start to have a reaction, they will slow down or stop the Rituxan and speed up the Benedryl.
Other than those moments of excitement, I'll pretty much just sit there. They'll have reading material and DVDs to pick from, and coffee and tea and some juice. I'm supposed to bring anything else I might want to read, or watch, and maybe my iPod, my computer (though there's no wireless access), and some snacks. The whole "snack" thing is encourgaing -- they don't expect me to be nauseous, though it is one possible allergic reaction, which is nice. They tell me there's a good deli nearby if I want to send Isabel out for something for us to eat.
All of that Benedryl will likely make me tired, so Isabel will be us driving home. That tired feeling might last into the next day, too. I'm expecting that it will -- a mere teaspoon of Benadryl makes me feel all dried out and tired, even the next day (the dreaded Benadryl Hangover), so I'm guessing that getting a pint or two of it will be that much worse.
Of course, there are some people who have almost no reaction. And then there are some who can't tolerate Rituxan at all, and have to discontinue the treatment. But most have some kind of reaction that can be dealt with.
The other three infusions usually go faster and do not pressnt the same side effects.
So I'm not terribly worried about all of this. Seems like it's all tolerable....
Saturday, January 9, 2010
The way Rituxan works is really fascinating. Like a natural antibody, it recognizes the invader that is was programmed to find. In this case, it looks for something called CD-20, a protein on the surface of the follicular lymphoma cell. (It's on lots of non-lymphoma cells, too, so Rituxin wipes out some healthy cells along the way.)
Once it finds the CD-20 protein on a cell, the Rituxan...well, it sorta...um.....
Actually, researchers have no idea why it works to kill off the lymphoma cells. That, to me, is what's so fascinating.
That's not totally true, that they have no idea -- it's just kind of funny to say. They have some idea. Researchers think that Rituxan works in several ways (but they're not really completely sure).
The first way is by Apoptosis, or natural cell death. Every cell in the body is programmed to die at some point; when a cell's "suicide switch" is turned off, you end up with cancer -- runaway cells that won't die. Rituxin may cause apoptosis by turning that suicide switch back on.
Another possibility is called Antibody-Dependent Cell-Mediated Cytotoxicity (ADCC). For this one, the antibody joining to the cell somehow triggers an immune response, so the antibody hold onto the cancer cell on one end, and then attaches to another immune cell with the other end, and that wipes out the cancer cell.
Still another possibility is called Complement-Dependent Cytotoxicity (CDC), where the antibody somehow damages the surface of the cancer cell, and the contents leak out, which results in its being killed off.
Rituxan might also work by making it hard for cancer cells to divide, or by signalling to the immune system in some other way that the cancer cell is indeed an invader, and should be eliminated.
Genentech, which manufactures Rituxan, has a very cool video showing how these processes work. Talk about Star Wars-type stuff -- you can almost see Luke Skywalker flying past the cancer cells in his X-wing.
So researchers have some idea that these three processes kill off the cells, but they don't know if they all work at the same time, or one works at a time, or if they influence each other somehow. My guess is that as we learn more about the genetic makeup of the cells, we'll have some clue. I'm guessing there will be differentiations between types of fNHL, and Rituxan will work differently depending on the type. But that's just a guess.
Rituxan does OK by itself, but its real miracle work happens when it is combined with other treatments, especially chemotherapy (which is why I'd be taking R-CVP, not just CVP). Since Rituxan has been added to chemotherapy, the Overall Survival rate for Follicular NHL has nearly doubled. (Or so it is speculated; not enough people have died to say for sure.)
So, Rituxan is a very good thing. Like I said -- my new Best Friend.
Thursday, January 7, 2010
First, this is what Rituxan is NOT: a type of chemotherapy. It's not a chemical or a drug, but rather a monoclonal antibody (also known as a MAB).
To take a step back even further: Rituxin is not a natural antibody, but an artificial one. It's made from a combination of human and mice antibodies, which is why the side effects include an excessive desire for cheese and an unnatural fear of cats.
Seriously, though, there are some side effects, and tghey do come from the non-human origins. I'll get more into that another time.
Now antibodies, in general, are part of the immune system, and work by identifying and attaching to invaders (viruses, bacteria, whatever). The immune system is able to create an antibody for each different type of invader, and each one has a unique shape that will attach only to a certain type of invader. That's why we don't get sick from the same disease over and over again. For example, once you get chicken pox, the immune system develops a unique antibody for that invader; the next time you're exposed, the chicken pox antibodies recognize it, attack it, and wipe it out.
One of the "invaders" that the immune system recognizes is abnormal cells that we create. It happens -- something goes wrong with a skin cell, and before it can reproduce, the immune system says "Hold on -- you don't belong here," and takes care of it. Cancer cells -- tricky little devils that they are -- somehow get around that. There's lots of fascinating research as to why, but to keep it simple, let's just say that cancer cells pull some kind of voodoo stuff and say to the immune system, "No, no problem here, I might seem like an abnormal cell, but it's fine. Just ignore me." And the immune system, in its voodoo-induced zombie state, says, "Duh, OK," and leaves the cancer cells alone, allowing them to grow and do bad things.
Rituxin comes along, and when the cancer cells say, "No problem here, you don't need to worry about us," the Rituxin says, "I don't think so," and goes to work.
Unfortunately, the cancer cells end up winning after a while. For some reason, most people end up resistant to Rituxin -- it works for maybe a year or two, sometimes longer (especially with something called "Rituxin maintenance" where the patient gets more infusions a few months later), but eventually, the cancer cells figure out a way to work their voodoo magic on the Rituxan, too.
So why bother? If we know Rituxan is likely to fail, why not go to something else with better chances of lasting longer?
Well, let's think way back, almost two years ago, to when I started this blog. You will recall that I've been saying all along that Follicular NHL, while slow-growing, has a nasty habit of returning. As long as it stays slow-growing, it can be managed, something like a chronic illness. That means that for many people (probably most people) with fNHL, we plan all of this as a series of treatments, beginning with watching and waiting, then moving on to the treatment that will work best with the fewest side effects, and then trying more aggressive treatments as the need arises.
My plan had always been to try Rituxan first, and see how it goes from there. My reasons for doing so have to do with time. The more time we can hold off the fNHL, the more time there is for researchers to come up with something else that will work better. And, of course, the longer we can hold off before having to use CHOP, the better off we are should transformation take place, aqnd we have to deal with a lymphoma that has become more aggressive.
So maybe the Rituxan helps for a couple of years, and then the fNHL comes back. Well, there's CVP to try. Or maybe in those two years, there's a new treatment available -- maybe another antibody that targets a different protein on the nacer cell, or maybe a vaccine, or something else that's not as toxic as current chemotherapies.
Rituxan gives me some time.
So, the bottom line is this: Rituxan isn't going to cure me. If that possibility existed, I wouldn't have sat around for two years waiting. Ideally, it's going to buy me some time. There's also the possibility that it won't work at all -- that happens about 25% of the time. It's also possible that it won't wipe it completely, and that I'll have a Partial Response. But even that would be good news, given how slowly things have been growing.
The good news is: I still feel great. I ran again this morning, and I just finished playing The Eagles' "Best of my Love" on the guitar. I feel good about starting the treatment, and I feel confident that I'm going to have some success with it.
You all can take that positive energy from me and feel free to add to it.
Wednesday, January 6, 2010
The kids seem to be handling it all OK, too. It helps that I haven't changed much in the last two years. We've been honest with them from the start, trying not to sugarcoat things, but also trying to put things in terms they can understand and not panic about. After school yesterday, we told them what was going on. Catherine wanted to know if I'd lose my hair (No), and John wanted to know what would happen if the Rituxan didn't work (Move on to another treatment and try that one -- we're not in a huge hurry). I think there's a video around online somewhere of Rituxin doing its thing on a cancer cell; I told them I'd look for it, and they were excited about seeing it.
Isabel has been doing OK, too. Like everyone else, she knew this day would come some time. She's a little bit stressed, but also a little bit relieved that we have a plan (waiting has been hard on her -- she is a woman of action, as some of you know, and much less likely to sit and watch things than I am). But she's handling it pretty well. Still, don't forget about her -- caregivers get lost in the shuffle sometimes, and she will need some reaching out to as well.
I appreciate the comments that I got on the blog entry yesterday, the responses on Facebook, the phone conversations. It's very comforting to know we have so many family members and friends (and even some acquaintances) who are willing to help out and keep us in their thoughts and prayers.
The online support group has been great, with lots of folks saying they're pulling for me, reminding me that they're all there for me, and sharing their experiences with Rituxan and CVP. They've been such a great source of information, inspiration, and comfort for these last two years.
I'll post more sometime tomorrow about Rituxan, and maybe find that cool vidceo, too....
Tuesday, January 5, 2010
I saw Dr. R today, and we agreed it's time to begin treatment. I start Rituxin on Friday, January 15 -- the second anniversary of my diagnosis.
Last Wednesday, I noticed some swelling at the top of my left thigh, just below where the cluster of troublesome nodes is located. Seemed like a bit of a coincidence, so I assumed it was probably related to the NHL. I called Dr. R -- he was in a different office that day, so I spoke to a nurse, who called the doctor. She called back with his report: he "wasn't overly concerned," but thought I should do a CAT scan and see him soon after to discuss the results. No problem with either of those things for me: I was scheduled for a 3 month visit on the 19th, and about a month shy of an annual CAT scan. We scheduled the scan for Monday (yesterday) and the appointment for today.
I really had no idea what the swelling was all about. There are nodes in that area, so maybe it was just more of the same? Maybe some lymphedema -- swelling caused by lymphatic fluid that can't drain the way it's supposed to? Maybe something unrelated to the NHL?
The scan yesterday was pretty uneventful (just the usual stomach discomfort from my barium milkshake).
The appointment on Tuesday started with bloodwork, as always. When I saw Dr. R, he said the CT scan results hadn't come in last time he checked, but that he'd check again. He said the bloodwork was "rock solid," with no anemia (a signal that the lymphoma has spread to the bone marrow), and everything else was also in normal range. He did a physical exam, and there was no indication that any other nodes had popped up in other areas, or that any organs were swollen. He said the thigh was definitely swollen, but he wasn't sure what the cause was exactly.
He then got a phone call from the hospital that he had to take, so he left to go to his office, saying he'd check one more time for the scan results.
When he came back a few minutes later, he said, "Well, I think we have an answer." He'd seen the scan results. The nodes on the left side had grown some; two of them had almost doubled in size, to nearly 6 centimeters. There was also some growth on the right side, and in the middle of the abdomen, in nodes that were too deep to be felt by hand.
The scan didn't go down far enough to see what was going on in my thigh, but Dr. R guesses the swollen nodes are keeping things from draining, and that's what's causing the swelling. He said the two large nodes are getting close to some blood vessels.
He said we could probably wait for another couple of months and see what happens, but his recommendation was to start treatment soon. From what we can tell, there's no transformation to something more aggressive, and there's no spread to any other areas (though some additional bloodwork results in the the next day or two will confirm that). So that's all good news. It's more about the area they're in, and potential problems that could come if things got bigger or more widespread.
Then we talked about treatment options. We'd always kept Rituxin as the first option, with stronger treatments to come after that. So he started the conversation with, "Well, there's a treatment called Rituxin--"
I kind of cut him off. "I know about Rituxin. I'm a professor, remember?"
He laughed. He skipped the background information, and said we'd try Rituxin for four weekly infusions.
"And if that doesn't work?" I asked.
"Well, there's kind of an alphabet soup of treatments--"
I cut him off again. "I know -- FNR, CVP, R-CHOP...."
He laughed again. A little obnoxious, I know, but I've been elbow deep in this for two years. I don't need the kindergarten-level lectures. (I'm aware that comment was obnoxious, too.)
He said he would consider Fludarabine, but he thinks I'm too young for that. I know it kicks the heck out of the immune system, and has some long-term side effects that might not be an issue for someone who's 65 years old. (I just wrote about all of this a couple of weeks ago.) I wasn't crazy about the Fludarabine option anyway, so I'm glad I didn't have to fight him on it. He thinks R-CHOP is too aggressive at this point -- also something I agree with.
That leaves R-CVP, a less aggressive version of CHOP. If and when the Rituxin stops working, we'll try CVP. That's just what I wanted to hear.
So that's where we are. I start Rituxin on the 15th, and I'll go for four weeks. We'll deal with all of that for now, and worry about the next step when we have to.
In the meantime, I still feel good, and look damn good. I ran 3 miles this morning. I don't plan on my 3-times-a-week runs changing anytime soon.
It's funny -- I've been stepping up the posts in the last couple of weeks because I wanted the January 15th post to be a reflection on my two years of watching and waiting, but also wanted that post to be my 300th Lympho Bob blog entry. I'm very close to that number -- about 6 away, I think. I've been planning out the blog entries for the next couple of weeks. I'm probably going to scrap those plans.
In the next day or two, I'll get more into what i know about Rituxin. I've written about it a bunch of times already, but now is a good time for a refresher. Dr. R and I talked about what to expect from the treatment sessions; I'll get into that a little bit, too.
I'll probably do this again on the 15th, but I want to thank you all again for your support. The blog has been a wonderful thing for me. Writing gives me an incentive to keep reading and learning, and the comments I get from people have been very inspiring. It's great to know that family and friends are reading, and great in a different way to know that complete strangers are getting something out of it, too. I hope reading about these next steps in my journey keep helping you all out.
Tune in again soon......
Sunday, January 3, 2010
It's probably fitting that we were busy for most of the day, working around the house, running kid-related errands. That's the kind of life we have, and we think it's worth celebrating.
But we did have some time together when all of that busy-ness was done. The kids were fed, so we had a nice dinner together at home: filet mignon with mushrooms, roasted parmesan potatoes, and broccoli with garlic. Some red wine (which is good for me -- the medical journals say so). Chocolate cake to finish it off.
What was especially nice was that the kids made the cake themselves. They've helped us out enough times before to know how to make a cake. Peter was in charge, and John and Catherine only stormed out of the room a couple of times during the process. John lit the candles on the cake. Catherine was our waitress for dinner, setting the table and discreetly refilling our water glasses. (I tipped her a dollar.)
But maybe the most memorable part came as Peter was decorating the cake. The kids took turns covering the cake with chocolate frosting, but they wanted to write "HAPPY 17th," but had run out of frosting. They whipped up a quick frosting to write those few letters, basically out of powdered sugar and a little milk with some food coloring. Unfortunately, the consistency was a little thin, and the letters kind of ran together a bit. Peter realized there was a problem as he made the letter A in HAPPY -- the three lines that make up the "A" sort of spread together, closing that triangle-shaped gap in the middle. He cried out in frustration. We called into the kitchen to ask if he was OK, and, trying to explain that the triangular gap in the "A" was closing up, he said, "I'm having problems with the 'A' hole."
Isabel and I couldn't remember laughing that hard on our anniversary before. Would have made a great little Reader's Digest story except for that punch line.....
Friday, January 1, 2010
Happy New Year, everyone.
But why look back? I think I was about 9 when I read Satchel Paige's quote, "Don't ever look back -- something might be gaining on you." Good advice, then and now.
All things considered, 2009 was better for me than 2008. I hope all of our 2010s are better for us than last year was.
Now go eat your black eyed peas.