Transplant update Tuesday

Well, I skipped the update for Monday. We had no doctor visits so there wasn't any new news.

Today we met with the transplant nurse coordinator for about 2 hours and the transplant doctor for about 30 minutes. Here is what we know...

Everything is in place for a transplant on April 11th. The insurance company still hasn't officially approved the process but we expect to have this by tomorrow. The pre-transplant work will begin on May 30th. That's when the chemo will begin.

The donor is a 29 year old male. That's all we know. His is a molecular match on a 10 of 10 scale! This is very good news indeed! There are a couple of minor mismatches, but this is about as good as it gets. In many ways this match is better than a sibling match. It provides a better graft versus leukemia effect (ie. less of a chance for serious complications and relapse). The fact the donor is male presents a few problems but also provides a few benefits. All-in-all the good probably outweighs the bad.

Jackie will be undergoing a slightly different protocol than has been used in the past by the Mayo for her chemo regime. She will receive a couple of doses of Rituxan in addition to the usual dose of chemo treatment. She has taken Rituxan on each of her past chemo treatments so it is nothing new. The protocol they are using is the latest "improvement" to the program.

Unless she sees a rapid increase in lymph node size or some unforeseen increase in her CLL counts she will undergo a mini-transplant. She will receive about 1/6th - 1/7th the normal dose of radiation and a reduced amount of chemo. As I mentioned before, the stem cells will do the "heavy lifting" to fight off any remaining traces of CLL. A mini-transplant is the latest trend in CLL stem cell transplants. The long term side effects are greatly reduced. Even with the mini-transplant they have promised she will lose her hair - post-transplant on day 7. It is kind of amazing they can pinpoint this with such amazing certainty!

From the time the transplant takes place we will be in Rochester a minimum of 100 days. The 100 days is a milestone date. It is usually at the 100 day mark that the chemo "port" is removed. This is a device that will be implanted a few days before the chemo begins. It is a surgically implanted catheter that is attached to the superior vena cava leading to the heart. It sounds like a serious surgery, but is done in a matter of minutes under local anesthesia. One hundred days also marks the point at which many patients are allowed to return home for short durations. We are told we can expect to be allowed to return home for 2 to 3 weeks at a time once past the 100 day period. The duration spent at home is increased as the patient makes progress at recovery. Checkups will be quite frequent for the first 2 years.

I learned today that there are 11 transplant doctors at the transplant center. I asked if what sort of transplants they covered; heart, lungs, kidneys, etc. I was told the had ELEVEN doctors who specialized in leukemia and blood related cancer transplants only! I truly believe if you came to the Mayo Clinic with a disease that only caused bad breath on Thursdays they could come up with a specialist to treat THAT disease!

We have appointments with the doctors again on Wednesday. After Wednesday we don't have any other appointments until March 30th. Therefore, we will probably drive back to Pryor on Thursday for a short stay.

From Rochester,

Bruce and Jackie
Oakwood Broadway Plaza
15 1st St. SE
Apt. 707
Rochester, MN 55904