Sunday, July 2, 2017
The Transplant Went Great. Why Do I Feel So Sick?
Dave’s Great Adventure
Transmogrifying From Leukemia to Stem Cell Adventures
July 2, 2017
The last time you got a synopsis…this time you get a DGA “War and Peace.” (Has anyone ever really read that whole tome?)
I have to admit, again, that I completely underestimated what this stem cell transplant would take out of me and what I’d feel like afterwards. For the longest time I feared the transplant, was almost panicked at the thought of going through it, but as I approached the actual procedure, I thought that things ought to go pretty well. I had few other illnesses to complicate the procedure, I had a great, ten out of ten, donor, had achieved Minimal Residual Disease (MRD) state (very little disease left in my marrow for the transplanted cells to have to deal with) with the use of the wonder drug, venetoclax, I was in one of the very best transplant centers in the country and had, as my doc, Dr. Issa Khouri, one of the pioneers in this business. He was doing this stuff back in 2002 when I first got sick. He knows his stuff. I actually thought (or fantasized, actually) that after a possibly rough month in the hospital, I’d be up and around seeing the sights of Houston for the rest of our putative, predicted 100 day stay!
And then the transplant went so amazingly well. The infusion of the cells didn’t cause any problems at all and in the first thirty days, they completely took over my marrow, eliminating the residual leukemia cells, changing my blood type to hers, and building up my weakened immunity (actually, she replaced it with hers.). And, other than feeling weak, I was doing very well indeed.
Yeah, I hit a few bumps along the way. I wrote up a quick synopsis a couple months ago highlighting the most exciting features of these bumps, but I’ve got to say now, and I’ll say it again later, my problems, GVHD rash notwithstanding, are trivial for a transplant patient. I’ll touch on this again shortly. Back then, everything was exciting to me because I'd never had a stem cell transplant before!
I’ve been keeping mental notes about what has been going on here, with all the good intentions that pave the road to Hell, intending to write them down. But the story keeps getting ahead of me and I haven’t caught up. So, I’ll put another bit of a synopsis together (can a synopsis be way, way too long?), stitching together various communications I’ve sent out to various folks in the interim.
My communications in recent weeks have been in the form of scattered emails, Facebook updates, texts and more, none of which went to my DGA community, which in any case, has probably gotten bored with the whole thing waiting for updates that never come. But, I’ll try to catch you up with snippets of stories I’ve managed to send out in recent weeks. These are collected below in journal form, in easy-to-read (or completely ignore) “chapter-lettes.”
After my outbreak of the GVHD rash, which was absolutely the most miserable, itchy rash I’ve had in my life, things began to be getting better rapidly on the huge doses of steroids I was taking. Remember, I was taking 160 mgs/day of prednisone, which is probably eight to ten times as many steroids as I’ve ever had in my life to treat an acute bronchitis, backache or anything else. Heck, with that many steroids, anything would feel better…for a while. My appetite came back enormously and I began easting furiously. I went to a local ice cream shop named “Hank’s” and had daily 16oz malts. Life was good. I even sent out a joke Facebook update saying I’d applied for and gotten a job there. (If you’re ever in Houston, and love homemade ice cream, try Hanks’s, a little family run shop down on South Main. Sixteen varying flavors, all great, and wonderful folks. Try their “custom” Dr. Eckberg chocolate malt!). Anyway, this real Facebook update followed;
DAY 59 UPDATE (May 5th) (All updates are counted from transplant day, Day Zero, which was March 7th). So, no, I'm not really working at Hank's, but I support them a lot. I wouldn't be allowed to work there or any public place anyway because of all the folks who wander in and out, exposing me to whatever infections they might have. Plus, I'm much too weak to stand behind the counter. If you see me in pictures, I look great, hearty and... healthy. When folks come to see us they invariably tell me I look wonderful. And I can fool you, too, if I'm standing still or sitting on a chair with my hands hidden.
But I'm not well. I'm very weak, I can't walk so much as hobble, and my hands shake most of the day. I cannot write anymore. I owe a lot of Thank You cards for folks who donated to my TNT (Team In Training) fund that Megan set up for me (DGA story to follow at some point) and when I can again write, I'll get them out. The problem is the GVHD rash and the steroids we have to use to keep it under control. Steroids are great meds but with lots of side effects. When I first got my GVHD rash, I started on huge doses of prednisone and then we tapered the dose rapidly. But after having reduced the dose from 160 mgs/day to 60 mgs/day, the rash returned.
When I started on the steroids, knowing they were going to weaken me, I started an exercise program of walking around the neighborhood, climbing stairs and such. But instead of maintaining my strength, I was getting slower and slower. And weaker. Finally, about ten days ago, as I was climbing the stairs in the apartment complex, my legs gave out. I collapsed on the stairs and I could not, absolutely could not- could not- get my legs to lift me up. Fortunately our friend Lou was with me to help get me upright so I could get back to the apartment. So, now I'm enrolled in a PT program which is just kicking my butt, so weak are my muscles. And despite the prolonged use of the steroids orally and the three times daily smearing on of full body steroid creams, the rash persists.
So, we're changing plans. My doc is getting me into a treatment called photophoresis. This is a procedure friend Stacey Campbell mentioned to me weeks ago, wherein they remove portions of my blood through a large bore catheter in my chest (inserted today!) and treat it with a chemical. Then it is zapped with UV lights to weaken the T cells which are mostly responsible for the GVHD reactions. We start this on next Monday. If this works, I should hopefully be able to get off the steroids somewhat sooner. The treatments can last six months or more. Meanwhile we continue our daily infusions of anti-fungal meds, which will also go on for six months or so, and continue to take about 35 pills a day of various sorts. And I think that's all that's of importance for now. More later.
--So, at a point in my recovery at which I had fantasized about visiting museums and taking in the sights of Houston, I was weakened, hobbled, shaking, slow and very immunocompromised. Not what I had expected. I have yet to visit a single museum, even though they're less than a mile from where we live. I don’t feel at all well. But then, I did okay for a while. I was going to PT three times weekly trying to regain my muscular strength, even as I was taking steroids which were tearing down my muscles at the same time. Then this update;
Day 76 (May 22nd) I am so tired. So very, very tired. And weak. I think I feel the weakest today that I've felt since shortly after we started the steroids weeks ago. I even collapsed in PT today...just couldn't make my legs support me again, like they failed me on the stairs a few weeks ago. And I suppose that's going to have to generate lots of official paperwork for my therapist since I fell to the floor. No blood, no foul, in my opinion, but I guess they have to report it up the chain of command. I'd been feeling poorly since last weekend when it felt like I was coming down with a sinus infection. My muscles had been quivering and shaking since I got out of bed this morning, and when we went to the hospital, I couldn't make it to our elevator without resting on a bench before we got there. That's a first. It was really hard for me to navigate the hospital, so weak did my legs feel. Man, this whole thing has been a lot harder than I expected. I should have known. I was given fair warning by a lot of folks. "It'll take 18-24 months before you feel normal again." I just didn't believe it could be so long. I didn’t want to believe it. I’m an impatient man.
We got the photophoresis procedures going a couple of weeks ago, to try to ease the symptoms of GVHD, but to do so they pulled my "small" central venous catheter (which looked plenty big to me) and immediately jammed a bigger one into the track in my chest which led to my right subclavian vein, which runs just under the collar bone. The photophoresis procedure, which I mentioned in the last update, collects some of my T-cells, which are donor white cells and are primarily responsible for the Graft Versus Host Disease (GVHD), and these are treated with a drug called Uvelox to sensitize them to UV light. Then they are given a little suntan and put back in my veins. We're doing this three times a week so far but eventually will taper down to twice, then once weekly when things start to improve. Hope that's soon. The machine randomly collects about a third of my T-cells with each treatment so it will never "catch" all of them but gets most over time.
But even as we were doing all this, other problems were simmering in the background. Despite using the whole body steroid cream daily (neck to ankles!), and taking oral steroids continuously, the rash persisted. No itching, fortunately, but its very presence showed that GVHD was still around. Then, slowly but on a daily basis, my liver tests were becoming abnormal, going up a bit with every twice-weekly blood count, This suggested GVHD might be invading the liver. It was looking like Grace's T-cells were upset with my liver cells too. The liver is another organ, after the skin, that GVHD likes to go after. But it's more ominous to have your liver damaged by the disease. My doc has done tests to look for other causes of this hepatitis, like viruses and such, but nothing has shown up so far. We'll keep watching these for a while longer but if they don't start trending downward, I'll probably need a liver biopsy. Not looking forward to something like that.
And now I'm just getting weaker and weaker; probably a combination of the whole stem cell process, the steroids, the hepatitis/liver inflammation (?), and, oh yeah, the fluids I'm carrying around because of the steroids. I'm on occasional Lasix ("water pills"), as well, to unload extra water which has been showing up in my ankles and my chest. And my hands still shake, thanks to the steroids and the anti-rejection drug, the tacrolimus, which makes eating an adventure and writing still next to impossible. But, you know, I'm still around to write these little updates, so I still have much to be grateful for.
I want to sincerely thank so many of you out there who have been praying for my health and survival during this process and, in many cases, praying for me long before we even began this procedure. Despite my many trivial complaints, I am doing, overall, very well. Hopefully this trend will continue and I'll get over these little roadblocks.
I also want to give an enormous "Thanks" and "GO TEAM" to so many members of TEAM ECKS FACTOR [please Google this if you’ve not heard of our team] who volunteered many, many hours at the Byron Nelson Golf Tournament last week. They raised money for the team, to be able to name a $100,000 grant to be donated specifically for research into finding a cure and/or better treatments for CLL (Chronic Lymphocytic Leukemia) which is what I had until Grace (my donor) wiped it out! That's all for now. Thanks everyone.
--But after feeling poorly for a while a few days, I began to gain strength back again and I thought I’d weathered the storm, and sending out this optimistic update;
A Day 86 (June 1st) Last week, just a few days after I sent out my "Woe is me" message, about how tired I was, I was getting ready to send a follow-up message that told you that things were much better already. But then things went south again....
But, before I get to that, let me first tell you how much better things really are for me in so many ways. First, in a major turn-around, my liver functions, which had been a major worry for me as they had been going up week after week and becoming more and more abnormal, since mid-April, have started to normalize. They have dropped with every blood test in the last 2-3 weeks. My liver is healing from whatever was hurting it. My doc thinks it was the green tea which I drank daily in the afternoon just to keep my fluid intake up to par. I wasn’t taking anything exotic, not an extract or anything weird, just Lipton's Green tea (decaf, to boot). He told me to stop drinking it and, ta da, the liver functions have started to return to normal that week. In any case, my liver seems not to be a problem now.
And my doc, in the face of normalizing liver functions has been able to further reduce my dose of steroids. I had been kinda stuck at 20mgs a day for several weeks, but now I'm at 10mgs a day and likely will drop to 5mgs tomorrow. And with that reduction, I have been regaining strength and am doing better in PT with most of my exercises and routines. I walk much better now and don't need to stop for breaks any more.
And, also in conjunction with the reduced steroid doses, I have lost about ten pounds and am getting close to being able to get back into my regular jeans. And I don't eat so much. My family can attest to the fact that when I was on high dose steroids, I ate everything in sight, even when I wasn't hungry, even when I felt stuffed...I would eat more. I'm happily past that now.
I'm still doing the photophoresis treatments, but they are down to twice a week now. They aren't at all painful or anything, but they consume time, about two or more hours at a time; more if they combine them with the infusion of my antifungal meds. But it is a cool procedure, watching them take out three units of blood and pull off the white cells, put them through what is essentially a "white cell tanning bed," and then put them back. The process weakens them somewhat so they're less likely to cause "graft vs. host disease." Seems to be working well.
But, last week, about the time I was going to send an update, I got a headache. Now, I get headaches all the time, all kinds of headaches. But over the course of the evening and into the night it got worse and worse such that I ended up in the ER at 3AM. It was the worst headache of my life. When I was an intern, working in the emergency room, if someone told you they were having the worst headache of their life, I was told that they might have a brain bleed…so after waiting five hours to think about this possibility, I went in to the MDA Emergency Room!) They found that my blood pressure was 187/114, a blood pressure I've never had in my life. In any case, they gave me meds to lower my BP and the headache went away. But that event sent me to cardiology, who now wants to do a cardiac catheterization because of a minor abnormality found on a previous stress test done weeks before! I've put that off for now but we'll talk about it again in the near future when I'm past a few other of my pending procedures, like another bone marrow biopsy, PET scan, post-transplant eye eval, derm checkup and such.
The bottom line is that the transplant is, overall, doing real well. All these complaints I have are, really, trivial compared to the issues so many other folks out there who have had this procedure are having. I am indeed fortunate.
We are at Day 86 of our 100 Day post-transplant stay. But, now it looks like it's going to be a bit longer. We may be here into July dealing with residual GVHD issues, photophoresis and such. We'll just take it as it comes. But, I have to say, having spent 86 straight days in the hospital is getting to be a grind, spending every single day here, weekends, holidays, Mothers' Day and such is getting old. However, I'm fortunate to be where I am and to be doing as well as I'm doing.
Then, more problems. Update from our daughter.
Day 90 (June 5th) After a fairly optimistic Day 86 update, the past few days have not been great for Pops/Mascot Dave. He's made three trips to the ER since then and is currently in the process of being admitted/incarcerated once again. Over the weekend he had to visit the ER twice for his blood pressure skyrocketing once again (measured as high as 202/128 or so). I don't think we have a root cause yet for that. One doc speculated that it could be the meds that he takes for his frequent migraines. We're expecting another visit to the cardiologist in the near future.
Yesterday Pops started developing a "chest cold." The folks he normally sees for his daily infusions told him that if his cough progresses he needs to go to the ER, so that's what he did this morning. He's since been diagnosed with the flu (technically, parainfluenza virus) and a CT scan shows some pneumonia on the right side. Alas, it's time for another incarceration. He's been isolated in the ER while they find a room to get set up for him. Let's hope that all of the medications and photophoresis haven't zapped so many of Grace's t-cells that he's not able to fight off this virus! This is yet another reminder that the stem cell transplant process is not an easy road. Thanks to everyone who has continued to keep him in your thoughts and prayers. It looks like it's time for another round of support.
Day 91 (June 6th) Pops is hanging in there. His GVHD rash has returned with a vengeance and made it very difficult for him to sleep last night. It's still bothering him today, but not quite as badly as last night. Interestingly, the flu and pneumonia symptoms aren't making him terribly miserable. Hopefully that's a good sign. Earlier today the cardiologist changed his heart meds to something that will hopefully control his arrhythmia without the blood pressure issues. Tonight he'll be getting IVIG all night to help boost his antibodies. Later he’ll be getting a blood transfusion. And he'll get his vitals checked hourly, so it's likely to be another night without a lot of sleep. But we know he's in great hands, and that's what's most important!
--Hospitals are lousy places to try to get some rest. There is always something going on; vital signs, meds being administered on the computer’s schedule, not yours, beepers going off, labs to be drawn. Plus, during my week in the hospital, testing went on as usual. I had another PET scan (which was read as stable and no malignancies seen) and a bedside bone marrow biopsy ( a first for me) which eventually came back, again, as showing negative residual disease…no leukemia! And all the cells found are donor cells now. Mine have disappeared. Plus there were drug levels drawn throughout the night, weights being done in the early AM…I hate being an inpatient. I am always so very tired when I’m released that all I can do is sleep, yet I have to go right back to my clinic, lab and PT schedules.
Day 97 (June 12th) He's been sprung! After another fun-filled day at MD Anderson, which included a ride in a pink wheelchair down to get photophoresis, Pops/ Dave managed to get released from his incarceration. He's very happy to be out and looks forward to a night of sleep without nurses knocking on the door all night. Another important note is that his heart meds have been changed, and the new one doesn't have the drug interactions with the oral anti-fungal, so he's able to take that now instead of the daily infusions. So... one of these days, hopefully very soon... they should have a day without a trip to MDA (the first day “off” since late February). We thought it was going to be tomorrow, but his doc wants to see him tomorrow. And Wednesday he has photophoresis again. So maybe Thursday. I don't think my parents will know what to do with themselves whenever it finally happens.
Day 110 (June 25th) update--ROLLER COASTER GOING DOWN!
Yep, that what it says; Day One Hundred and Ten Update. When I signed up for this transplant it was strongly suggested that I'd be finished and on my way out of town by about Day 100. But stuff happens. That 100 days is a very flexible number. I've recently talked to another transplant patient who was at about Day 134 or something. We're all different and getting different stem cells under different circumstances and undergoing different transplant protocols. And encountering different complications along the way. Lots of us have some form of GVHD. It's not predictable so you can't really plan for it so much as watch out for its signs and deal with it.
Actually, we were on a great glide path to exiting Houston in about 100 days when I ran into the little parainfluenza ("paraflu") episode. That disrupted so many things. I was doing quite well, gaining back my strength, walking better, eating less, the GVHD rash was virtually gone and I was generally feeling much better. We had been able to taper my steroid doses down from the max of 160 mgs/day to just 10 mgs/day, and were primed to drop to just 5mgs in a day or two. But now I'm back to feeling just about as weak, tired and miserable as I have been since I got here. This is what happened.
A few weeks ago I woke up with a bit of a cough, no fever or anything, but my transplant team has trained me well into knowing infections can run rampant in folks like me within hours. Doc Khouri was out of town but I called in and the team advised me to go to the ER for testing. There they found I was infected with the parainfluenza virus, and a chest CT showed what appeared to be an early pneumonia. I was immediately started on a couple of powerful antibiotics (to help prevent a secondary bacterial infection) and admitted for what would be a week's stay.
Now, there's no treatment for the paraflu, you just ride out the symptoms as best you can. It causes croup in babies and can do serious harm to older, immunocompromised folks like me, but I was getting excellent supportive care to prevent problems. The real "problem" was what your immune system does in response to an invasion by the flu virus. It ramps up to fight off the invaders.
So, in my case, when the paraflu hit me, my donor, "Grace's" white blood cells also ramped up to fight off the infection. Just what we really didn't want just at the moment since we were still fighting off the residual rash from my GVHD attack of weeks previously by trying to suppress her cells' ability to mount an immune response, which were causing the rash. But she's got really strong cells, and despite the steroids and the tacrolimus doses she's subjected to daily, her cells came to life.
Within a day of admission the rash reappeared on my chest and belly. Then a day later it started crawling down my arms and legs. Then the itching started up all over again! Everywhere. So how do you treat GVHD? More steroids. My steroids went from 10mgs a day to 20 a day and then to 30 a day. And, with the steroids come swelling, weight gain, blood pressure problems, abdominal swelling and more. And, more importantly to me, a delay in getting off the drugs entirely and going home.
Meanwhile, in a separate but parallel story, cardiology came by my ward and changed my heart meds a bit to some that would allow me to take oral antifungals instead of having to get the daily infusions which we've been doing daily for three months. Great news, but the oral antifungal I was put on apparently interacts strongly with tacrolimus in high concentrations and before I knew anything about it, my tacrolimus levels were supra-therapeutic and four times what my doc wanted them to be (I should mention that he was out of town for this entire adventure). That can result in kidney problems and damage, reduced urine flow, headaches, blood pressure elevations and a lot more. Indeed, my kidney functions are now reduced but slowly seemingly heading back toward normal. My blood pressure is still out of whack, however and runs all over the map. I take a couple of meds now to try to keep my pressures below 160/100! I am loathe to say anything bad about my care at MDA, because I LOVE the place, but someone didn't do their homework when they made this change. Didn't read the package insert, apparently. My doc is a bit upset about the changes made in his absence, so I've heard. But there is probably a lot more to this story than I’ll ever hear.
But the paraflu, with all the immediate care I received, turned out not to be a big deal at all. It was pretty much completely resolved within a week. Now we're dealing with all the residual problems resulting from my medication changes.
So, I'm about back to where I was a month ago. I'm now back to hobbling through the hospital on weakened legs, taking rest stops at benches along the way, feeling constantly and deeply fatigued and exhausted, so exhausted at the end of a day of appointments that I've had to pass on opportunities to go to Hank's, if you can believe that. And my hands still shake, my legs quiver, we're back to full-body coatings of steroid creams again, three times daily. And, of course, I'm again on elevated doses of the double-edged drugs, the steroids. We won't be able to taper off these for another three weeks or more, I'm guessing. Hope we can see some fireworks from the apartment.
However, having said all that, my problems, for a transplant patient are really trivial. I can still soldier on through the day, though slowly, do the things I really need to do, and I don't have any of the so-very-common symptoms of more serious GVHD, involving the liver, gut, lungs, pancreas, eyes and so much more. I've never had intractable nausea, vomiting or diarrhea. I am absolutely exhausted at the end of a day of appointments, but I'm here and moving. I still have a great deal to be grateful for, despite some setbacks. I sometimes compare myself to the poor souls I see in the Transplant Clinics; bald, emaciated transplant patients huddled under blankets in their wheelchairs. I feel badly for them since they're having so many apparent problems yet I’m doing so well. It's sobering to walk through the transplant ward and see the chart of the progress of the nursing staff with their Bereavement Committee program. It's a grim reminder that not everyone does as well as I'm doing.
Thanks again for all your support and well wishes. And thanks yet again for all you who have been supporting the Team ECKS Factor fundraising. You guys are just amazing! I hope to be able to see you at some event or another when they reduce my restrictions on being around crowds, but that may well be far into the future.
--So, here’s where I stand at the moment, on Day 116. The transplant has gone extremely well. I’m totally engrafted, my blood is now Grace’s blood, her immune system is now managing my body, I have assumed her blood type (having morphed from A negative to A positive) and most importantly, the transplant has apparently (per two bone marrow biopsies) eliminated the leukemia from my marrow. I am now like so many transplant patients, dealing with the side effects and complications of the transplant rather than the graft itself.
And these complications can and have included high blood pressure, headaches, GVHD full-body rashes, collecting fluid in our lungs and bellies, swelling of the feet and ankles, ongoing fatigue and weakness, muscle wasting from the steroids, significant tremors of the hands and extremities, memory issues, sleeplessness, oral thrush, recurrent jock itch and so much more. But, this is very important to note; most/many of these side effects are relatively temporary and can be dealt with. And in my case, we're actively dealing with them and will overcome them with a bit more time.
But now my hair is falling out. That's another story.
I was going to intersperse some humorous anecdotes and stuff into this DGA but my editor tells me that it's already way too long. So, maybe next time. Or maybe a special issue just with funny stuff. In any case, more later.
"When a person doesn't have gratitude something is missing in his or her humanity."--Elie Wiesel
“Some people call me a hero and tell me that I’m very brave to keep battling against all the problems that have come my way over the fifteen years I’ve been dealing with chronic lymphocytic leukemia (CLL) and now the transplant problems. And I truly appreciate these comments. But I’ve told my family and others that I’m just a stubborn old curmudgeon who doesn’t like to see problems get in the way of my progress. So I try to get around, over or through the obstacles. Problem is, recently the obstacles have been coming at me much faster and are bigger and more at a time than I’ve had to deal with in the past."--Dave