A journal of one person's experience with Autologous Stem Cell Transplantation for multiple sclerosis
Though I've lived on the Texas gulf coast for the last 23 years, I was raised in Kansas. I am of northern European ancestry. I drank milk by the gallon. And, my grandfather had MS. In other words, I had all the risk factors stacked against me. (I didn't know it though, because my grandfather was never diagnosed. All they knew was that he had a lot of neurological problems.) I started RR with my first symptoms in 1982. I was diagnosed in 1989, and went SP in 1997.
The first symptom I remember, I was 25 in 1982 when one day after repairing one of the instruments in our lab I found it more difficult than expected getting up off the floor. I recall commenting that I had been taught you weren't over the hill until 30.
Subsequently, I had many episodes of lost feeling that would last hours or days. I would just ignore them. Once I started having l'Hermittes's sign, I thought I knew the source of the problems, spinal compression from playing basketball. So, I went to a chiropractor. These visits did help, so I continued without a diagnosis.
When it got to the point I could no longer catch the basketball, I knew it was something worse. My GP sent me to the neuro the same day, and she scheduled the MRI for the next Monday. Once the MRI was evaluated, she told me MS, but wanted to be sure. She scheduled me for two weeks in the hospital under the care of an MS specialist. Spinal tap and evoked potentials confirmed the diagnosis as definite MS. This was January of 1989.
At this point, my left arm was so weak, it was almost useless, and I fatigued within a few minutes of starting to exert myself. So the third day in the hospital, they started treatment with 1000 mg/day of IV prednisone. After 3 days, I started bugging them to let me go. After 6 days, they agreed. No taper after and they didn't warn me, so I went to work the next day. After just three hours, I crashed; fortunately, no damage was done to my recovery.
Subsequent to the hospital visit, I had relapses two to four months apart. They were treated with oral prednisone or methyl-prednisolone. I had to give up basketball and football, but I continued to golf.
By 1994, an entire round of golf was getting to be a little too much for me due to fatigue. Fortunately, I was one of the lottery picks when Betaseron was first given to the public (they had a lottery because demand far exceeded supply). Improvement in fatigue and reduction of relapse frequency was immediate (and welcomed). Relapse frequency was about once a year, and seemed to coincide with the transition of fall to winter. I went back to 18 holes of golf with no problem (continued to have to ride in cart though).
Unfortunately, B is not a cure. I went SP in 1997. By 1999, I could only play 9 holes (played every other hole, resting between). Then, 6 holes became a stretch. I developed other symptoms; blotches in my vision that started white, over time they changed to blue, then spent a long time as lime green, and finally just faded away, ear thumping, and a whole body jerk on relaxation. I went on disability in August of 1999.
I went off B (reluctantly) in June 2001 to prepare for the bone marrow transplant. I immediately noticed I fatigued more easily. However, there was a benefit; a problem I'd been having with itchy white patches on my skin almost disappeared. Very likely my immune system was better able to fight whatever it was without the suppression provided by B.
Unfortunately, tropical storm Allison flooded the hospital's total body irradiation chamber and pushed back my bone marrow transplant to the end of November. I couldn't tell if the progression during the time I was off B was any faster than when I was on B.
November 17th, 2001
Perhaps this treatment will become a standard procedure for MS, so I will try to give you a step by step through it. First, a little background, then where I am now, and finally when you might expect to hear from me again.
I am participating in a Phase I trial testing the use of autologous stem cell
transplantation to cure MS. Results in Europe have been very promising, though
not perfect. You can review them in this abstract:
S-19 EFFICACY OF STEM CELL TRANSPLANTATION IN TREATMENT OF MULTIPLE SCLEROSIS IN EUROPE
from Cowboy's post of 9/24 titled ECTRIMS/Speaker's Abstracts.
You can find the trial recruitment at:
I am number 4 into the trial. The 3 previous are doing well. They have 5 spots remaining.
I am SPMS with an EDSS of 6.0. The neurologist in the study is using the newer performance scale which combines a 25 foot walk, a peg board coordination test, and a memory/math test to evaluate clinical effects. He did not tell me my score on the test. MRI and spinal tap are being used to evaluate CNS changes.
At this point, I have already had my stem cell's harvested. This was done on an out-patient basis. I was treated with Neupogen for four days, then hooked to an apheresis machine for five hours. The Neupogen only had minor short term side effects for me, though a leukemia patient I talked to complained of intense joint pain. However, the long term side effects of Neupogen/apheresis/stress were an exacerbation.
Schedule for transplant
I am being admitted to the hospital on 11/24. Here's the schedule:
Nov. 24 - surgery to install a central line; begin chemo
Nov. 25 & 26 - chemo
Nov. 27, 28 & 29 - total body irradiation
Nov. 30 - infuse stem cells
Dec. - wait & watch
The "central line" is a tube into a major vein which they will use to put in drugs and blood. The description of the treatment was high dose chemo & low dose radiation. They will keep me in semi-isolation until my white blood cell count returns to a reasonable level. Then, I go home and stay indoors for a month. Then, I get to go outside, but must avoid crowds.
The reason for the gradual reintroduction to the world is I will have lost all my immunity. My immune system must relearn just like a baby's does. Eventually, I'll receive my childhood vaccinations again.
I'll try to give updates from the hospital. However, they say I will be very sick for at least two weeks.
December 19th, 2001 - What happened in the hospital
I was admitted to The Methodist Hospital, Houston, Texas on Nov. 24. I'm back home after 21 days in the hospital. I'm worse for the wear, but that was expected. There was really only one day of hell; unfortunately, every MSer will be forced to experience it by the protocol. Here is a day by day breakdown; the day of hell is day 17.
Day 1 - Install a central line in my chest and begin chemo. I also start penicillin.
Day 2 - Chemo. I don't have any problems with the chemo other than the hiccups. Still they are both annoying and tiring. They give me an antihiccup med which works for a while. At some point, they start me on other antibiotics/fungals/virals, including Levaquin. More on that later.
Day 3 - Last of chemo. Begin radiation.
Day 4 - Second day of radiation brought out the full effects, sun-burn all over, diarrhea, fatigue, and nausea. I start breaking out in a rash on my back; this is Levaquin, but we thought it was radiation.
Day 5 - Last day of radiation.
Day 6 - Stem cell infusion. They prepared my hospital room for surgery before the infusion. I could never get anyone to explicitly say why, but I'll guess that if I had an allergic reaction, there were going to be some invasive counter measures. As it was, the only thing that happened was they gave me IV Benadryl in one quick shot and slammed my brain against a wall.
Day 7 - First day of daily Neupogen shots. Neupogen promotes proliferation of stem cells.
Day 8 - The rash is getting very uncomfortable and spreading. Where it started on my back, the pustules are rupturing. I can only sleep on my right side. (Left side is central line and I never sleep on my stomach)
Day 9 -
Day 10 - White blood cell count (WBC) undetectable
Day 11 -I had a platelet transfusion either this day or the next. It is not uncommon to need platelets or red blood cells during recovery.
Day 12 -
Day 13 -Somewhere in here we figure out that the Levaquin is the source of the rash which has now spread to my neck and scalp. Something different is substituted for Levaquin.
Day 14 -
Day 15 - WBC detectable, but insufficient for release from hospital. Last day of daily Neupogen shots.
Day 16 - WBC detectable, and sufficient for release from hospital, must happen three days in a row for release.
Day 17 - WBC detectable and sufficient, but this day, hell comes in the afternoon.
Of course, the primary concern in a bone marrow transplant (BMT) is post-op infection. So, the protocol requires that fevers be allowed to run their course so that it can be seen whether the antibiotics are working on the presumed infection. On day 17, I had a platelet transfusion in the morning, which part of the pretreatment for is Benadryl. This of course, sent me loopy for at least three hours. When I became semiconscious, I had a low grade fever, 98.5, which is 1.0 degrees over my normal body temperature of 97.5. I was thirsty, so I started drinking water and gatorade. Unfortunately my output volume was small and falling, and I didn't notice. 8 hrs. after the Benadryl, I became fully lucid, and realized my fever was rising. I asked the nurse to measure my temperature, 99.5. At some point around this time, they started treating me with IV antibiotics, but my primary concern is "I want to urinate, and all I get is a little dribble". By 9:00 pm, my temperature is 101.5, and I can not urinate. The doctor on call must be contacted before they can catheterize me; I'm in pain and the antibiotics aren't doing anything to bring down the fever. It seems as though an hour passes before they are allowed to catheterize me and treat the fever with steroids. I return 1100 ml of urine. After the catheritization, I am able to urinate small amounts for a while, but I have to be catheterized again at midnight. I must sleep sitting up; if I lay down, the stretching taut of the skin over the bladder makes me want to urinate. Finally, at 3:00 am, I am able to empty my bladder without aid. Then, I got some good sleep.
The hell of this episode and why it will torture all MSers is I did not have an infection. The source of the fever was engraftment syndrome, which is rare in autologous BMT, but has occurred in all the MSers done so far in Houston. After this my urinary output volumes were ~100 ml, so urination was twice as frequent as normal. Over time, the volume has come back up to its usual 200 ml, but the stream has remained thin even to today.
Day 18 - WBC detectable and sufficient. That's three days, but they are now treating me with Medrol to control the fever, and the cultures from the blood samples collected on Day 17 won't be back until Day 20. However, there is now widespread agreement among the doctors that it is engraftment syndrome.
Day 19 -
Day 20 - Everything is under control. They're ready to release me tomorrow, but I might need a blood transfusion before they do.
Day 21 - Dramatic jump up in platelet count. Small positive move in hemoglobin. I'm out.
I was released on Friday; on Monday, my first out-patient check up showed all my blood counts are normal; WBC - 12.4, Hgb - 10.9, Plt - 179. That's the best news in a month. Now, I just need to avoid getting sick for about a year. I am avoiding all dairy just in case butyrophilin really is the cause of MS.
December 22nd, 2001
Good news. I had my second out-patient exam yesterday, and I got the unique experience of seeing a look of surprise in the hematologist's face when he set aside his stethoscope. I have fully recovered from the radiation/chemo, evidently much sooner than expected (I've always been an extremely health individual, other than MS). The Dr. cleared me to start exposing myself to some of the things which were previously off limits. For example, I may have a beer (yes, just a beer). I may venture out without a mask. He said not to just jump into everything, but to add things slowly.
So, I'll use this sign of good health as the starting point to measure neurological recovery. Unfortunately, I did suffer neurological setbacks in the hospital, mostly from the day of hell which included a 101 degree fever. As of now, I use two canes most of the time, and have two urination problems, when I have to go, there's no stopping it, and when I do go, I can only generate a thin stream. Going into the hospital, I was one cane all the time, and Detrol controlled my only urination problem.
I'll update you when more than incremental progress is made in the neurological recovery.
January 9th, 2002 - First post-op infection
Well, it had to happen ... I have had my first infection. My immune system was more than willing to fight it. It sent my temperature soaring when given the opportunity. I'll try to report in chronological order, so I'll give the infection details second, and the improvements I had made prior to that first.
I made small, and to most unnoticeable, neurological improvements from 12/22 to 1/2 (date of the first fever). On 12/27, I used one cane until late afternoon. Unfortunately, that's been the only day I used just one cane for any length of time. On 12/31, my urinary stream switched from thin and weak to medium power (I'd like to call it strong, but I don't think I'll ever see that again). I touch typed an email on 1/1; I haven't touch typed in over two years. These are all improvements, some of which I never dreamed of making so quickly.
Then, on 1/2 I developed a fever late in the day. I used Tylenol to keep my temperature down, and went to the hospital the next day for a regular appointment. The sadists at Methodist wanted to know whether it was a major or minor infection, and told me not to take Tylenol until my temp had peaked or it had reached 101. They also took extra blood to test for cytomegalovirus (CMV), which I was known to be carrying (I had chicken pox around age 8).
On the night of 1/3 at 11:30, I determined my temp had peaked at 100.1, then took Tylenol. This meant I spent 4 hrs. at elevated temp that I never would have normally. It gave me a headache and upset stomach that night, and left me with a low pitched hum in my left ear, a tremor in my right leg, and a weakened urinary stream.
I called Methodist on 1/4; they wanted to know if I was getting better so forbade me to take Tylenol until my temperature peaked or reached 100. It peaked that night at 99.7. I didn't call Methodist the next day. Thank God, the night of 1/4 was the last temp above 99. (BTW, my normal temp is 97.3.)
I went to Methodist for a regular appointment on 1/8. They saved the "bad news" until they could do a face to face. The source of the fever was CMV. With my new immune system, I was no longer resistant to it. Fortunately, this was a very mild flare up, but they will now start keeping a closer eye on it. If it gets too bad, they will have to treat me with an IV drug, gancyclovir, everyday for three weeks.
Neurologically, this CMV episode has set me back. This message was produced by hunt and peck, I am two canes 24/7, and I fatigue more easily than I ever have. Fortunately, my urinary problems are a little better than when I came out of the hospital.
I do envision further neurological improvements now that I know it can happen. Hopefully, I'll be ready for intense physical therapy in a few months.
January 28th, 2002 - My new immune system defeats CMV
After three weeks of off and on fevers, I've been fever free for more than a week. Even a few days before I was fever free, the cytomegalovirus (CMV) test came back none detected. The further fevers proved none detected is not the same as none. The hematologist said it is a very good sign that my immune system was able to control the CMV without help. (The only other patient to get CMV in this trial had to be treated with gancyclovir.)
On the neurological front, the fevers set me back, especially in terms of fatigue, but I am getting better. Today was the first day a trip to the bathroom was not tiring. My strength is improving too. Today was one cane all day long (first time since before the chemo/radiation treatments).
On a different recovery front, my facial and nose hair are starting to grow again. In fact, the nose hair is kind of annoying. It seems to be growing faster than before the chemo/radiation.
March 26th, 2002 - Three month check-up
As part of the trial, I will be tested every three months, alternating spinal taps and MRIs. The first test was a spinal tap, which I had about ten days ago. I got the results today; there was no change from the baseline tap done before the transplant. The nuerologist said there was no reason to expect there would be a difference. Good news would have been if the oligoclonal banding had dropped from >4 to 3, but even that wouldn't have translated to observable physical improvement.
So, we wait three months for the MRI. Then, results will be more conclusive.
My physical progress is slower than I expected. My strength is near pretransplant levels, but my stamina is nowhere close. I become very fatigued after walking around for only a brief period. The hematologist said this is common in bone marrow transplant patients, and that it usually takes 6 to 8 months for the fatigue to disappear.
I have had a change in bladder function, but don't know for sure to what to assign the change. I was retaining too much urine, so my urologist took me off Detrol. That put me back to normal retention, but the urgency issue when my bladder is near full is now a problem again. My urologist said there wasn't a solution for this problem which wouldn't cause retention. An additional benefit to not having the retention problem is the disappearance of some transient abdominal pains I had been having for several months. My best guess for the source of the problem is the fever I had while still in the hospital. I have not been able to generate a strong stream of urine since that incident.
I know this last one will generate some envy, but I report it anyway since it is a side effect. I lost twenty pounds during the procedure, and I don't seem to be able to gain it back. My calorie intake is somewhat higher than before the tranplant, and my exercise is definetely less. The hematologist just says your body is going through a lot and seems unconcerned. Of course, I know the solution; just buy new clothes and the weight will come right back.
April 23rd, 2002 - Overdoing it is not Beneficial
In physical training, there is an often used phrase "no pain, no gain" which implies you must push yourself past limits in order to achieve improvement. I can now tell you that this doesn't work for an MSer recovering from a bone marrow transplant.
I've been doing much better recently; achieving small things I haven't done in a couple of years, such as using my leg muscles to swing my right leg out of a chair instead of picking the leg up with my right hand. Fatigue is now my biggest problem. So, Monday before last, I felt really good and started doing many, many minor things I'd been putting off, trying to stretch my endurance. By evening, I was very tired, too tired as it turns out. I had a variety of minor pains due to nerve/MS problems, not to physical problems, and Tylenol did not help. (After a transplant, the hematologists frown on the use of NSAIDs because they thin the blood. Pretty much the only pain relievers open to you are acetominophen and opiates.) So, I could not get to sleep until six hours after bedtime.
The sleep I did get that night did not replenish my energy reserves. Also, I lost many of the coordination improvements I had achieved over months of recovery. Now, eight days later, I'm back to where I was about three weeks ago. Going forward, I will try ... no guarantees .. to take it slow. (I did push it a little yesterday, no problem.)
May 28th, 2002
I had a couple of days of mild fevers shortly after my last post. Fortunately, there did not seem to be any recovery set back. I've also had and recovered from a rash on my left hand. When the rash first appeared, I thought by look and feel that it was poison ivy. However, it continued to slowly spread for 10 days after first appearing (poison ivy shouldn't). Also, as the rash cleared, dark blobs appeared in the centers of the upwellings (I've never seen that in poison ivy).
So, I'm healthy now, but still recovering. Recently, I've started doing more of my own shopping. Soon, I'll be doing all of the routine stuff, My strength is near pretransplant levels, but stamina continues to be my biggest problem.
In a couple of weeks, I'll be going in for my six month check up. There'll be an MRI, and that's when we'll have objective evidence as to whether the course of the disease was altered. I'll let you know as soon as I know.
June 16th, 2002 - Success with Objective Proof
I've had my six-month check-up and the essence of it can be boiled down to this quote from the radiologists report. "The overall disease burden is unchanged, although several plaques are slightly less prominent." OK, maybe that doesn't sound so profound, but it's sweet music to me. Summarizing all the MRI data, my MS is not active and I might be showing some signs of improvement.
In terms of physical symptoms, my fine motor skills in my hands are improving (evidenced by improvement at some computer games) and I'm getting back limited control of some leg muscles (evidenced by occasional ability to cross my legs). I feel like I'm just on the verge of being able to take a few of steps without a cane (and without falling down). Also, this message has been touch typed without errors (so far).
OK, the procedure was a success, but did the patient survive. My blood counts are still slightly below normal, and I still fatigue very quickly. A friend of mine pointed out that this shouldn't be a surprise since I meet the definition of anemia. I've been getting outside more recently, and it seems that every day --
<< this is where touch typing ability ends, fatique causes loss of ability to use ring and pinky fingers on left hand >>
I come back in with something new swelling up on my arms. My immune system is fighting these allergens, though I'm not sure it should. I somehow seem to have avoided the common cold, though I think that I have encountered several flu or flu like agents which manifested as some fevers and stomach problems. Overall, I think I'm doing well. (That is what the hospital tells me, though I don't think they'd say anything different unless I was really in trouble.)
I'll update again when I have news. My next MRI is in December.
July 7th, 2002 - CMV Wins a Round
I'm back from the hospital with a multi-colored left side of my trunk. In the end it turned out that my skin color matched the color scheme of the hospital room (and boy, was that ugly). I'll have to say CMV won this round, since I'm still in pain and the pain has potential to last for a long time.
What happened was that cytomegalovirus (CMV), which I had fought off in January, made a comeback as shingles. I want to make it clear that my central nervous system, and thus my recovery from MS is unaffected by this latest bout of illness. Also, my immune system is fine, though still slightly below normal efficiency. The doctors said there is no reason or cause and effect associated with the CMV outbreak; it was just time.
So, my body knows how to fight CMV; what happened? While the immune system works in peripheral nerves, it doesn't work quite as well as in the rest of the body. CMV established hideouts in my peripheral nervous system when I had chicken pox as a kid, and chose now to start replicating and attacking those nerves, and subsequently erupting to the skin in order to spread. In the hospital, they put me on intravenous acyclovir which prevents CMV from replicating. With virus production slowed down, my immune system will have a better chance of controlling the infection. When the skin eruptions went dormant, they sent me home from the hospital, but I will still take the oral form of acyclovir for two weeks.
So, right now I have some annoying nerve pain, but not the kind of debilitating flashes of intense pain I had when I went into the hospital. I am cleared to do anything I would normally do. (More to the point, the doctor said "Do all the good things you normally do". I asked about doing bad things, but he didn't want to know about that.) I am walking well, though slowly, and I touch typed this entire message.
July 10th, 2002 - Would I do it Again?
Would I do it again? This question is being asked frequently now. Though it's one I had not intended to answer until one year after the transplant, I'll give a proviosional answer now. But, before that answer can be fully understood, one has to look at the reasoning for the first attempt.
I first came across this potential treatment about 5 years ago when I read an article in which 4 leukemia sufferers had had their MS cured as a side effect of their treatment for leukemia. So, my hopes were inflated even before there ever was a true study on bone marrow transplant (XPLT) for autoimmune diseases. I watched as the abilities to perform autologous XPLT were refined, and mortality rates came down. More elevated hopes. Then, I read about this technique being trialed as a cure for lupus, and I knew it was just a matter of time.
At the same time, I was watching the vaccine research doing increasingly well. I knew there would be less near term risk with the vaccine, though long term was open to question. I remember that monoclonal antibodies were going to cure all diseases, including MS. Instead they worked for a while, until the body kept trying to produce more and more T cells to replace those tied up by the antibodies. I fear that the vaccine faces the same type of unforseen consequences as it revs up the immune system to fight ... the immune system. There is a level of complexity there that does not exist for the immune system reset by XPLT.
So, I am predisposed toward the XPLT when I see an advertisement for volunteers in a study being conducted only 45 min from my front door. At that point (March 2001), the success rate for people w/ SPMS is 92%; the mortality rate is 5%. Or the way I looked at it, the odds were 20 to 1 it wouldn't hurt me, and 10 to 1 that it would improve me. Combine those odds with the facts that I have no wife or kids and that I could easily pay for the XPLT, and it becomes a no brainer. DO IT.
Well, what do I know now. Even if the XPLT didn't kill me, it did hurt me. I went from one cane to two; I lost twenty pounds; and I fatigue so quickly, I can't even think about swinging a golf club. In the trials, the mortality rate has increased to 8%, and the success rate has dropped to around 80%. ... And the vaccine trials are going very well.
Seven months out, I'm back to one cane most of the time; I've put back on 4 pounds; and they say the fatigue will improve soon. I do have subjectively measurable improvements in eye-hand coordination, and at times, I feel like I'm just that far from being able to throw away the cane.
Would I do it again? The odds are 12 to 1 it won't kill me; 5 to 1 it will improve me. Yes, I'd probablly do it again, but I'd look harder at the vaccine. Ask me again in 5 months.
September 8th, 2002 - Nine months out
My nine month check-up produced a little good news, a little bad news, and was mostly a non-event.
My arms are stronger; I even noticed as the nuero was doing the tests that he was having to put in some effort to break down the shoulders and elbows. Unfortunately, my left hand and my eyes are worse. I'm touch typing this, but the errors in left hand keystrokes are numerous. My eyes are experiencing increased nystagmus, which I have noticed in numerous ways over the last month though I didn't know what was causing it until now.
My blood counts are still not back to normal, though they continue to assure me this is typical for transplant patients. I have put back on a little weight, but I'm still about 10 lbs. below pre-transplant levels.
Maybe the best news was that they were discontinuing the spinal taps as part of the follow ups. Perhaps, I've had my last spinal tap ever.
On the subjective side of the evaluation, I feel much better than I have in a while. I'm doing little things which I've been putting off for as much as a year. And, the remnants of the shingles are down to a minor annoyance.
November 15, 2002 - Back to Normal
At last, I feel as though I'm back to normal, i.e. pre-transplant condition. I have objective evidence that I am not, but at least when I stand up to do something, it seems as though it will get done.
I am taking longer strides when I walk, though I still can't get my legs to take steps of any size quickly. I am hitting golf balls again, though I'm at least ten yards shorter than before the transplant. I set out from my car in the parking lot to the store or restaurant expecting to get there without any problem, though I usually end up dragging my right foot by the time I'm there. I'm not back to normal, but I'm close enough to normal to try to be normal.
I haven't had a fever in weeks. I had a blood count 2 weeks ago, and my hemoglobin and platelets are back to normal. My white and red cell counts are still below normal, but they are still rising.
Hopefully, as I get into more activities, coordination and stamina will come back.
January 2, 2003 - One Year Out and it looks like SUCCESS
I got the results of my one year check-up on Dec. 20 and they were all good. The MRI continued to show no new or active lesions. The physical tests showed improvement in both hands and in my legs. My white blood cell count was back to normal. Only my red blood cell count was still slightly low.
Unfortunately, my own measuring stick, distance on my 5-iron, is 50 % below last year. Since the other tests prove there has been an improvement in control of the muscles, there seem to be two possibilities to explain the deficit. The one which seems most likely is that I am weaker now. I don't feel weaker, but I don't have a good measuring stick for this. The second possibility is that a year off has caused my muscle memory to forget something or mistime something in the swing.
Now, I have to consider the harder question, would I do it again? The answer is a qualified yes. I have seen the data on my physical tests (I won't publish it here since it is part of a study which has not yet undergone peer review), and they indicate a more or less continuous improvement over the last year. Providing that improvement continues, I look forward to putting my canes in storage. However, there have been some drawbacks associated with the transplant. One is illustrated with the 5-iron. I weigh 10 lbs. less now; is that lost muscle due to the long recovery? Another drawback is psychological. The way the world is portrayed to you once you go through the transplant is as though everything in the world is out to kill you. You spend the first month on antibacterial, antiviral, and antifungal medications (the antibacterial was continued for a year). Every little scratch and scrape requires immediate attention, disinfection, and protection from the environment. And now, I have to take all my childhood vaccinations again. I didn't have any reactions when I was a child, but I definitely remember my neighbor, one year younger than me, who got polio from the vaccine.
So, I certainly would like to see an alternate cure which was not quite so invasive, and more certain of success. In other words, check out the vaccine studies first.
I'm one year out now, but they will continue to monitor me with MRIs every six months for several years. So, my updates will be less frequent.
May 14, 2003 - Unlucky Post #13
It has been noticed that I haven't posted in a while. I had been intending to post every three months, but I also like to have every thing in a neat package before I do so. Things are not neat; in fact, they're a mess.
I have skin cancer. This cancer is the result of the transplant and I'll detail it as best I can at the end of this post. I am doing it that way to keep events in chronological order.
Since my last post, Methodist has started giving me my childhood vaccinations. Three times I have received injections of two or three vaccines on one day. Twice, that day was followed by a day of muscle aches, but no other problems. It will take approximately a year and a half to complete my vaccinations.
My physical health has progressed to the point that one day in February I twice hit my 5-iron 5 yards further than I had been hitting it before I went into the hospital. Now, my arms appear to be getting stronger faster than my legs causing such mistiming I haven't been able to rely on any of my irons for a month. I'm working on it though.
Sometime in the middle of March I noticed a red patch on my face. I thought it was an infection, and let it go for a while. Toward the beginning of April, it hadn't improved and had started to burn a little, so I went to my GP. He thought it was an infected cyst and put my on an antibiotic. I didn't improve, so he changed antibiotics. I didn't improve so he sent me to a dermatologist to have the cyst cut out.
The dermatologist cut, but there was no cyst. He changed antibiotics. I didn't improve, so he changed antiobiotics and took a biopsy. A week later, we learn it is a squamous cell carcinoma.
That probably sounded to most like a very poor display by the medical professionals, but the books do say that this type of cancer is frequently mistaken for an infection in the early stages. What happened next truly is a poor display by the medical professionals.
The biopsy report called the carcinoma moderately aggresive because it was invading my nerves. Considering my recent transplant, my dermatologist wanted to get me into surgery quickly, so he called a surgeon at M. D. Anderson Cancer Center (the "premier" cancer treatment center in the world). A week later, I spent two days getting poked and prodded and seeing specialists. It came down to the surgeon not wanting to cut it out becouse of its proximity to the lower eyelid and the radiation oncologist not wanting to treat it because I'd already had a lot of radiation associated with the transplant. Eventually, they decided to go with radiation and I was scheduled for a treatment planning meeting last Friday.
At that meeting, I was examined by three radiation oncologists who said nothing to me and asked me no questions, then went out of the room. One came back in and said that I was going to have surgery instead of radiation, and that I was through for the day. I went home expecting to get a call scheduling the surgery. Nothing. Mid-morning Monday, I called the surgeon. The secretary said he was gone to a conference this week, but the nurse would call. Nothing.
M. D. Anderson assigns each patient a Patient Advocate who is supposed to represent the patients in meetings and guide them through the treatment. I called mine late Monday. A little checking on the computer found I had an appointment for an exam with the surgeon on May 21. I explained why I thought M. D. Anderson had performed poorly so far in my treatment. I got this response from "my" advocate. "I'm sure you would have been informed at the appropriate time."
After that display, I called my dermatologist to cross check and make sure I wasn't about to be killed by negligence. He was disappointed in Anderson's performance, but said I could go a month without treatment with a low probability of complications. So, here I sit with a growth sticking out of my face that I can see in my peripheral vision. (There's no mistaking it for an infection now.)
Now, about squamous cell carcinoma and bone marrow transplant, squamous cell carcinoma is not the typical skin cancer that most people get from sun exposure; 85% of skin cancer cases are basal cell carcinoma. Squamous cell carcinoma is typically found in the aged and immunocompromised. Therefore, it is very likely, though not provable, that I got this cancer as a result of the transplant. Unfortunate, but this cancer is easily treatable and rarely metastasizes. So, if the transplant cures MS, a few skin cancers are an acceptable price to pay.
June 25, 2003 - 18 Month Update
Well, I have two things to talk about this time, cancer recovery and the 18-month check-up. Like last time, I'll go in chronological order which means cancer first.
Cancer Operation and Recovery
I had surgery at M.D. Anderson under general anesthetic on May 27. The surgery went well, and the cancer was completely removed. However, they had a problem with the air tube and the positioning of my head such that they extensively bruised my throat. I couldn't even swallow for a day and a half after the surgery. I'd just take in a little liquid and let it run down my throat.
My throat is mostly healed now; I just lose my voice after I've been talking for a while. After the surgery, the surgeon told me I could expect many more of these cancers because of my fair complexion and thin skin.
As an aside, having been through operations at both M.D. Anderson and Methodist hospitals, I would recommend Methodist over Anderson anytime. Anderson is assembly line medicine where you are a unit number to be processed and tracked while Methodist is personalized medicine.
18-month Progress Report
The 18-month check-up went well. The MRI showed my brain was stable., i.e., no new lesions, no active lesions. The timed physical trials showed that my legs improved again, and I can now walk twice as fast as when I went into the trial, but my hands were unchanged from six months ago. I had sensed that my rate of improvement was slowing, but it is still improvement. The more subjective trials like the finger to nose to finger test seemed to show some improvement. My guess is that means my brain has a better sense of where the unseen parts of me are than it did six months ago. Howwever, I will say that when I wake up in the middle of the night and need to scratch an itch on my nose, it is still trial and error before my finger finds my nose.
At the 18-month check-up, they also gave me more immunizations. As a consequence, I only got two hours sleep that night. Those aches passed away in a couple of days.
September 17, 2003 - 21 Month Update
I actually don't have anything objective to report this time. Exams are now on a six month basis, and as a minor miracle, I don't even have a doctor's appointment until November.
So, subjective measures will have to do. I am getting a little more range of motion in my right foot. I think my stamina is improved. And probably most important, I feel as though I can resist the urge to urinate a little longer. In any case, I'm definitely more confident about my ability to be a distance from a rest room.
One interesting feature of my new increase in stamina is an increased frequency of falling down. I don't know whether it's because I'm trying things that I'm not used to or that I just don't realize I'm getting too tired and losing muscle control. In any case, it's not a worry, because I've become very good at falling. No injuries other than some bruises.
I've also overcome most of the psychological problems of the immune system reset. I no longer worry that every germ I encounter is trying to kill me. I don't leave the vicinity when people are coughing. But, I haven't petted a dog yet.
© Craig Garisson, 2001-2003