Well, it has been two years since the transplant. It seems like it was a thousand years ago. We have had a lot of ups and downs along the way. Initially we dealt with the fear of the disease and then the fear of the treatment and the cure. In the beginning it seems we dealt with nothing but fear. From the beginning I've covered the good as well as the bad parts of the ordeal. That is still the case today.
We still deal with some fear. Jackie is still having problems with GvHD. The fear is that it will become worse. She has progressed from a simple irritating skin rash to Stage II GvHD with painful lesions on her arms and legs. The increase in GvHD has taken place over the preceding six months; most in the past three months. We thought we had escaped any major transplant problems but it seems there are still some challenges before us.
To keep the disease at bay she is on a 20 - 25 mg of Prednisone regimen. One day she takes 25 mg and the next day she takes 20 mg. This is supplemented by a 100 (temporarily 200) mg per day intake of Cyclosporine. Over the last few days we have increased this to 200 mg to try and get the disease further under control. It is too early to say how effective the doubling of the Cyclosporine will be. One year ago she was taking only 5 mg of Prednisone every other day and 50 mg of Cyclosporine. As her new immune system kicks into high gear problems with GvHD pop up. The good news is that even with the compromised immune system she has been able to fight off (rather quickly) several bouts of common colds and a minor case of flu. I'll bet if she gets back to a minimal amount of suppression her new immune system will stomp out any germ or bug that comes along in record time.
Finally she is taking PUVA light treatments. This consists of taking Psoralen which makes the body more receptive to UV long-wave ultraviolet radiation. A pill is taken and then you spend a few minutes in a special tanning booth. The treatment is often used to treat psoriasis. It has been used with some effectiveness against GvHD. It is difficult to tell if the PUVA treatment is helping. Her skin is very raw and seems to be sunburned. All-in-all it is a fairly painful experience. The Cyclosporine causes her feet to be numb and she experiences muscle spasms. The Prednisone has caused weight gain and she is experiencing the "moon" face that is often seen with steroid usage. Through the initial transplant she lost 100 pounds. She has regained about half that weight. All this in spite of the fact she doesn't eat a great deal and gets a lot of exercise. Again, the Prednisone is the culprit.
The doctors tell us the GvHD should improve. They warn it will take a lot of time. They talk about years. We return to the Mayo in about a week. We will see what, if any, changes will be made in the treatment plan.
In spite of the somewhat negative report Jackie has no signs of CLL. I believe it is a thing of the past. In spite of the pain she is living a more or less normal life. She isn't able to do as many things as she would like and she does have a lot of frequent pain that is controlled by use of standard pain medications. She is able to work part time. I know this is a contradiction; living in pain - but living a fairly normal life; but this is the best way I can describe her situation. Post transplant life certainly beats pre transplant life. I remind her the GvHD is also providing GvL effect.
So how normal is life? What can you expect if you decide on the mini BMT? Tonight she is in the kitchen making Cakelettes
for an upcoming food show next weekend. That is NOT something she would have been doing 3 months prior to transplant! So...as bad as things sometimes seem it beats the alternative. This is just another bump in a very long road.
Bruce and Jackie