January 5, 2000 -- Our First Trip to Boston
Hi everyone!
Wanted to share our latest adventure with you. I apologize if I repeat stuff I've already told you.
We went to Boston yesterday (Wed.) to meet with the doctor who will do Dave's bone marrow transplant (BMT). Dana Farber is a really nice hospital. The people were all very nice. We checked in, and a guy took us into a little room to go over all our insurance stuff and to sign papers (the first of many, I'm sure!). Then we met with the doctor. He was a nice guy. He did some background, explaining what CML is (Chronic Myelogenous Leukemia, the leukemia Dave has), and the different treatment options. There are medications (Hydrea and Interferon) which will keep his white counts down, but won't cure the disease. Interferon also has some unpleasant side effects. He mentioned STI-571, the drug that was recently in the news. It normalized the counts in all the patients who took it, and it even cured a few of the patients, but it's still very new. They don't know what the long term effects of it are, so the doctor didn't think we should pursue that avenue. If we were to try it, and it didn't work, Dave would probably be a lot sicker a few years down the road when we would want to do a BMT, and it probably wouldn't be as successful. So we'll rule that out!
The other option is the bone marrow transplant. He told us about 2 ways of doing it. The first is the traditional way. He gets his brother's marrow and then stays in the hospital for 4 or 5 weeks until his blood counts get high enough so they'll let him go home. They expect that he'll be pretty sick -- nausea, vomiting, diarrhea, fever -- and they know how to treat those things. He will also likely develop Graft vs. Host Disease (GVH). This is where the bone marrow that he receives sees his body as a foreign object and starts to attack it (the way a heart-transplant patient's body will reject a new heart). GVH can range from mild to severe. People who get it usually develop a rash, and in the severe cases, the liver and other organs are affected. It can be treated with medications, but it's pretty nasty stuff. The good part about it is that the cells that are attacking his body also attack any remaining leukemic cells that are left in Dave's body. This is called Graft vs. Leukemia, and is a good thing.
The second transplant option works pretty much the same as the first, except before the marrow is transfused into Dave, the cells that cause GVH are removed (they're called T-cells. This type of transplant is referred to as a "T-deplete" transplant). This means that Dave won't be as sick after the transplant because GVH doesn't happen. Since this doesn't happen, he won't have to take as many medications, so his body will recover faster. The hospital stay is shortened to 3-4 weeks. Six months later, his brother comes back up and they do a regular blood transfusion of his blood into Dave, and Dave gets the T-cells he needs to kill off the leukemic cells.
The T-deplete transplant is relatively new, but the survival rate is the same as with a traditional transplant. This was new information for us, so we're going to talk to Dave's doctor here and see what his thoughts are about it. I'll also do some research and see what I can find out. It sounds like a better way to go, tho.
After we met with the doctor, a nurse came in to talk to us. She will be our nurse throughout the procedure. She was wonderful. She spent two hours with us telling us what to expect and answering all of our questions. Everyone else left at 4:00, but she stayed with us until 5:30, and never made us feel like she wanted to leave.
Dave will be admitted on a Friday (sometime around the end of February), will have chemotherapy on Saturday and Sunday, then radiation Monday thru Thursday. On Thursday morning they harvest Jon's marrow (doesn't that sound gross??) and transfuse it into Dave. By all accounts, it's a pretty anticlimactic day for Dave. Jon doesn't even need to stay over night. He'll be sore for a few days, but should recover pretty quickly. Dave's brother Donnie has already volunteered to come up with Jon (he volunteered to come up with whoever was the match!), so he'll be able to help Jon out.
Then the fun begins. It will take Dave's body 2 to 3 weeks to start producing it's own marrow, and they'll monitor him pretty closely to keep an eye on his blood counts. It's during this time he'll be taking all kinds of medications. If he develops a fever (which they expect he will), they'll give him antibiotics, and if necessary, antiviral medications. He'll be taking immunosuppressants, drugs for nausea, drugs for pain.
When he's released, he'll have to check in at the hospital pretty frequently for the first couple of weeks, then once a week, then every couple weeks. Eventually he'll be able to go back to his doctor here for the check ups. He'll need to wear a mask whenever he goes out, at least for the first few months. It will take his body about a year to fully recover, but he'll be able to start working some after 4 or 5 months.
The next step for us is another visit to Boston. We'll go down a couple of weeks before he's admitted for more tests. We'll also meet with the doctor and nurse again. The nurse will give us a tour of the transplant area. She said it's good for patients to go to the transplant center and then leave, because the next time they enter it, they won't be leaving for a while.
Jon will also need to come up for a physical and some tests. They'll check his blood, and Dave's, for compatibility again, and look for any viruses or other germs that may be lurking unnoticed.
While this is still a very scary thing, we feel a lot better since we talked to the doctor and the nurse. They were very comforting, and instilled a lot of confidence in us. These people know their stuff! It also helps to know that all of you are thinking good thoughts for us. It means a lot to us. We'll let you know how things go.
Sorry if this got a little long winded. I wanted you to know as much as we know. If you have any other questions, let us know. I'll talk to you again soon.
Allison