Greetings all! Seems like a lot of health changes have been going on for me, mostly for the better, as I have now gone through days 100-120 since my stem cell transplant. Let’s take a quick review.
Around Christmas week, which was about day 80, I first noticed significant fatigue issues that I had been warned about on release from hospital. That is also when I slowly started to develop symptoms of which the doctor now considers chronic Graft Versus Host Disease (GVHD) of the liver. During this time I also started to see a lot of hair growth again. This 100 day milestone just marks a point where my body is starting to manufacture it’s own cells again more aggressively. You might say they are the children of my donor cells as many cells in the body start to die and regenerate around 100-120 days. So these latest changes of hair and increasing cell growth, as I said in my last post, are good news since my bone marrow biopsy 1/3/2011 showed everything is normal in the marrow.
Now the not so good changes are that my donor cells are attacking my liver as foreign. This is a very common complication of a transplant. Other common GVHD issues that other people have had are skin, GI tract, and eye problems. The GVHD is classified as acute or chronic. Acute traditionally means it happens prior to 100 days after transplant but doctors now are using clinical diagnosis more than a strict time cutoff. The doctor also had an ultrasound of the liver to confirm diagnosis. So chronic in this case means they feel this is something I will deal with for awhile instead of an acute condition which may last a few weeks and go away.
So you may be thinking, chronic, that doesn’t sound good. Well, they have a lot of drugs to fight the condition and put it in permanent remission. The GVHD is like bringing home another cat when you already have an older cat. They may not get along and fight pretty viciously but after awhile they will learn to accept each other. The drugs to fight GVHD are like the cat owners of the infection fighting world. They tell my donor cells to back off from my liver by weakening their infection fighting agents. The hope is the donor cells slowly learn that my liver is not that bad and they give up their fight. As the attacks calm down and my liver enzymes return to normal, the doctor starts tapering off the drugs. The good thing is the liver is an amazing organ that has the ability to regenerate so it will heal itself with no problems. Eventually, you should be off the drugs completely, but it’s not uncommon for the attacks to flare up again and you repeat the process. Over the course of months and maybe years this process continues until you no longer have any reactions. Everybody is different and you can’t really predict how each persons body will react so even though I had a perfect donor match, my liver is still not exactly the same a my brothers liver. And there is also the possibility of flareups in other organs. For example, the skin may become a factor once I start spending more time out in sun again.
The chronic can be manage but the drugs to manage them are not tame. They are steroids that can cause serious issues in long term use. I will continue to have weekly blood draws so we can quickly taper down the drugs once the liver enzymes go down. I am taking daily 120mg of Prednisone and 2000mg of Mycophenolate which are both extremely high doses. The Mycophenolate is retail $950 for 30 day supply, but thanks to insurance I only pay $7 🙂
Now in spite of all these liver issues, I have actually felt the best in the past two weeks. The liver issues only show up in lab work, I do not have any physical outward signs from that. The past two weeks my hemoglobin and hematocrit numbers, which measure oxygen and red blood cells in your body, are now higher than my very first blood test in July 2010 which first pointed to signs of problems. In fact they are just a shade below normal.
So we reviewed all this at my last doctor visit and I now have the OK to return to work Feb 1! I still have to be very careful about infections by staying away from obvious unhealthy environments and washing hands many times a day. In addition, these steroid drugs I am taking have knocked down my ability to fight viral infections. So I am asking my friends and coworkers to keep that in mind when you see me and don’t be offended if I back off or not shake your hands 😉 Also, be aware even if you aren’t sick you may have kids who have gotten a viral infection or something you should be careful being near me. Another reminder from a previous post is that I have lost all my childhood immunizations and I can’t get vaccinated again for another year. Getting measles or chickenpox as an adult would be a very bad thing indeed 😦
Time for some pictures. The doctor and nurses only see me about once a month now so they were very excited about my hair growth. Still not exactly sure yet what color it will come in or the texture..what do you think?!
Now that I have made it past 100 days, a few glitches in recovery have started to show up.
First, I have had an issue with liver enzymes slowly rising since Christmas week. The initial thought was anti-fungal medication I have been taking for several months to prevent infections was becoming toxic to my liver, so they doctor took me off that medication. After waiting a week and rechecking labs, there was no improvement, and in fact the enzymes continued to rise. So now signs point to Graft-versus-host disease (GVHD), which is a common complication with stem cell transplants. Basically, my cells are being attacked by my donor cells as foreign, and this war is going on in my liver and gut. The weapon of choice to fight this is the drug Prednisone, which I am now taking daily in 40mg dose (now 120mg/day as of January 21). The Siteman MASH unit will recheck my labs in about a week and we should see the liver enzymes going down. If that happens, and the General expects this to be the case, that would pretty much conclude that I am suffering from GVHD.
The second glitch is, because of the problem with liver enzymes, I have been kicked out of the clinical trial I was going to start last week. I had to be symptom free to proceed with the trial. The only real effect is I am back on the “Standard Treatment” plan which most people follow, and miss out on some additional “free” follow up. On the other hand, the clinical trial could have introduced problems on its own (that’s why it is a clinical trial) so in the end I won’t know if it would have helped me any more in the long run.
The last potential glitch is how I react to Prednisone and if that changes my plans for returning to work Feb 1. This is a powerful drug…so potent that I have to be weened off it once it can be discontinued. The drug actually causes adrenal suppression, which means your body stops synthesizing natural corticosteroids and is totally dependent on the oral medication. So you can’t stop suddenly taking it. By weening off the drug, your body naturally will start making it’s own corticosteroids again. So far, I have been on drug since Friday, Jan 14 and have not experienced any issues. I take it in morning so that should prevent insomnia problems. I may experience weight gain and rounding of face. The most unusual side effect, which would be jarring for people who know me well, is agitation and change in personality – things like getting short tempered or being unable to concentrate. I am not taking that great a dose as compared to some people who are on it for years. Hopefully, I will just be on it long enough to get the liver problems back in check. My next doctor visit is Jan 28 and by then I should have a pretty good idea how things are going and if this would delay a return to work.
Now the good news. On Monday January 17 I will finally get this central line removed from my chest 🙂 It has been in since mid September and there is really no medical reason to keep it anymore. My exercise has been going very well as I am riding on bike everyday and sometime supplementing that with walk around the park. Once the central line is out, I can start doing some things with my arms. Will probably look into getting some of those rubber bands for exercises.
My hair growth on head has really taken off. I am about at Larry Conners hair at moment. I definitely have more than Matt Holliday or Albert Pujols! My goal is to get to Anderson Cooper hair, but I might have to go Pee Wee Herman before then.
Final thought on GVHD. This is a very common problem and should not be a significant issue in recovery. Some doctors think a little GVHD is good as it promotes a Graft versus Leukemia effect. That process encourages your body to fight any stray diseased cells that still may be lurking in your body in much the same way a flu vaccine fights future flu infections.
That’s all for now, should have another post after Jan 28 doctor visit.
Happy New Year!
I started the year getting my second post-transplant biopsy on January 3. The results have come back normal with no sign of disease. The bone marrow still shows that it is recovering and that will go on for many months.
The next bit of good news is this doctors office finally got insurance approval of the clinical trial for being on a maintenance treatment. Initially, insurance denied the claim because it was a Phase I Clinical Trial but they did their magic and got it approved. There is no additional cost to me but I get the additional follow up care and a potential health benefit to me, or someone in the future based on trial results. I could get up to 8 weekly treatments at 6 week intervals which would cover weeks 1/10, 2/21, 4/4, 5/16, 6/27, 8/8, 9/19, and 10/31.
I will get my central line out the week of Jan 17. This will be good to eliminate another potential source of infection. At this point, the benefit of the line for administering medication and drawing blood is outweighed by the line itself causing problems the longer it is in.
The last bit of good news is all signs point to being able to go back to work Feb 1. How many days I work at home verse actually going into work will probably not be known until I know how tired I get. I have vacation to use up anyway and work is always very good about allowing us to work from home.
There have been some minor problems. My liver enzymes have been going up, so the doctor took me off of some anti-fungal medication. I do not notice when these numbers are off, the doctor just sees that in lab reports. The high liver enzymes will also delay start of first week of trial till Friday Jan 14 to give it time to come down. The other problem I do notice lately is much greater fatigue. The doctor is not too concerned and just emphasizes that I keep exercising. Since I have been getting out more, that may be one source of fatigue also.
Looks like the weather is going to turn colder again, so I guess I should enjoy being able to stay at home and not deal with elements driving to and from work!
Just a reminder if you comment on the blog, I get an email that someone has posted a reply and your comment is visible to everyone. You can always just send an email to me directly or a Facebook post if you don’t want everybody to see your comments.
The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:
The Blog-Health-o-Meter™ reads Wow.
A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 6,600 times in 2010. That’s about 16 full 747s.
In 2010, there were 40 new posts, not bad for the first year! There were 36 pictures uploaded, taking up a total of 5mb. That’s about 3 pictures per month.
The busiest day of the year was August 11th with 290 views. The most popular post that day was In The Beginning…..
Where did they come from?
The top referring sites in 2010 were facebook.com, forums.marrowforums.org, fenux503.maritz.com, mail.yahoo.com, and mymaritz.com.
Some visitors came searching, mostly for stem cell transplant, flamingo jim, //jimschmitz.wordpress.com/, pink bird productions, and pink bird production.
Attractions in 2010
These are the posts and pages that got the most views in 2010.
In The Beginning…. August 2010
Day 24 – Stem Cell Transplant Day +15 – Discharged! October 2010
Another Care Package October 2010
Day 17 – Stem Cell Transplant Day +8 October 2010
Getting Closer September 2010