Since there has not been many changes to my health status lately, I have not been posting as often. This is a good thing! Hopefully I will only post a few times in 2013. Let’s just review where I am at health wise as we close out 2012.
I was diagnosed with a blood cancer, myelodysplastic syndrome (MDS) in August 2010. MDS is just one of many kinds of blood cancers, the most well known being leukemia. Untreated, MDS will definitely turn into leukemia (and sometimes even if it is treated). It is generally treated two ways based on your age and health outside of the blood cancer.
The first treatment is chemotherapy and drugs with the goal of putting the cancer into remission. This works for a lot of people as you can be in remission for years. The downside for this method is eventually the maintenance drugs will no longer be effective and you will not be able to stay in remission. Again, this time frame may be many years, so if you are older this is probably an effective treatment. But some forms of disease are relatively mild and it is possible for these people to go 10, 20, even 30+ years on drugs alone with maybe plasma and chemo every now and then.
The second treatment is a bone marrow/stem cell transplant. This is the only way to “cure” the disease – there are no drugs right now to cure blood disorders. A transplant works by replacing your defective stem cells with stem cells from a donor and “rebooting” your bone marrow so it stops making bad cells and starts making good ones. In order to replace the stem cells, you have to kill off as many of the bad cells as you can with chemotherapy. The chemotherapy also keeps knocks out your immune system to keep it from attacking donor cells. Once you get the transplant (basically an IV in your arm), your donor cells have to graft with your bone marrow in the next 15 days or so. If this doesn’t happen, you are in a heap of trouble. After the initial graft there is a time period where the donor cells grow and expand and your immune system comes back online.
In my case, after about three months and a couple bone marrow biopsy’s the doctor could tell me I was 100% donor cells and all my blood counts were stable and rising. So I am in remission for my blood cancer (cancer doctors never want to say “cured”, but like all cancers if I stay in remission five years then they can officially say I am cured).
So all good right? Unfortunately, in treating the blood cancer I acquired a new disease called Graft-versus-host disease (GVHD) of the liver, a very common byproduct of the treatment. There are three big GVHD diseases that can effect people – skin, liver, and lungs. I had no skin or lung problems, but about 4 months after transplant my liver numbers skyrocketed. This was a sure sign of liver GVHD. Using steroids to treat GVHD in turn gave me a case of steroid induced diabetes for several months in 2011. Luckily the diabetes is gone, but after two years I still have liver GVHD as the chart shows below.
To the far right are my numbers before the transplant (all three enzymes were below 50). I have not had a normal liver panel since August 2010. Right now I have the liver numbers of an extreme alcoholic. But there is no pain and the only way I know there is an issue is the monthly lab work I am still doing.
The good news is GVHD can be treated with drugs. Prednisone is particularly effective and when I was on a high dose of that my liver numbers were almost normal. However, that is a nasty drug to take in high doses and causes a lot of other problems.
So this is where I am now as we close 2012. The doctor does not seem too concerned about the ongoing high liver numbers as he has seen this hundreds of times. He keeps saying eventually I will be off all drugs. I made it all the way through 2012 without having to be admitted to hospital and now I have all of my booster shots. Hopefully 2013 is another lucky year!
Jim December 2012