Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Thursday, June 29, 2006

Thursday +78 (10:30 PM) Update2.

It appears we will be seeing the fireworks in Rochester this year. They conducted another complete series of blood tests this morning. This included another CMV test and a new one to determine if we can return to the old method of flushing Jackie's central line with heparin instead of sodium citrate. We won't have the CMV test until tomorrow. It will be the third test in about a week and we hope it will again be negative. We received the results of the latest chimerism test and once again it is showing her to be 100% engrafted. This, of course, is good news.

They allowed Jackie to make the decision as to whether to return home until the +100 day tests. They said she could return home if she felt she could get follow-up care in Tulsa. She elected to stay here for a bit longer. Her platelets have taken a recent turn for the worse. Nobody knows why they have declined. They have held steady with levels above 120 most of the time. As most of you know, they have hovered in the 140-150 range for a long time. This morning's tests showed them to be at 76. This could be a fluke. As longtime readers know, we have seen this before with record high numbers and record low numbers that "fixed" themselves on the next day's tests. The problem is that platelets are a good indication if something else is going wrong. If there were an infection, if some GvHD were beginning to take place, if the CMV were to become active the platelets could all be negatively impacted. Therefore, she made the decision to wait and see what a few more days would bring with regard to blood counts.

Her white blood cell count has not recovered to the extent the doctors would like. It currently stands at 1.5 with ANC at .75. This is after 3 courses of growth factor that should have caused this count to increase. The decision was made to change to a different type of growth factor. She will receive 5 courses over the next 5 days. The only problem is the new growth factor can cause fevers. If a fever does develop they will need to treat it as if there is an infection. This means IV antibiotics, blood cultures, etc.

If the counts are good on next Monday she can make another decision as to whether to go home. At this point it almost seems pointless. Her +100 day graduation tests will take place about July 20th. At that point they will do another complete set of tests. This will include a PET scan, MRIs, and a bone marrow biopsy. They will be able to determine if any CLL remains. If so, they will make a determination about how best to proceed. This could involve inducing more GvHD or even infusing more donor leukocytes. Hopefully none of this will be required. As I've mentioned before this entire process will take at least one year to complete. The nurse we met with this afternoon reiterated that she always tells patients to expect a one year disruption in their lives.

Of course things could be much worse. In the waiting room lobby I met the husband of the lady I've discussed before that required two transplants. As readers know I've reported she was doing well. As it turns out she has problems with her second transplant. She is at day +90 and still requires two platelet and two red blood cell transfusions per week. They are now looking at performing a third transplant. They conducted some new, sophisticated tests that show she has a very unusual mixed chimerism. Her killer T-cells are hers, rather than the donor. She received a 9 of 10 match from a sister. They now wish they had done a matched, unrelated donor (MUD) transplant - the type Jackie underwent. If they do a third MUD transplant it would require her to undergo a full chemo/radiation treatment. She is so weak they don't know if she can take any more. You really have to feel sorry for them as she is only about 40 with young children at home.

For the most part Jackie had a good day. It started a little rocky this morning but after some pain meds she did well. She had some nausea this evening, but for the most part the day went well. She is still having difficulty with eating. Most things still don't taste good and the nausea is ever present.

So it appears we will watch the fireworks in Rochester. I hear they have a nice show!

Until Later...

Bruce and Jackie
From Rochester, MN


Anonymous Anonymous said...

I think Jackie made the right choice- better to be in Rochester with the experts! I know you are both dissapointed as well as friends and family back home-
We will pray for that young family.
Have a Happy 4th!
Sandra and Dean

4:58 AM

Anonymous Anonymous said...

We are also disapointed but think the right decision was made. But I'm sure we will be seeing you guys in a about 21 days.

Pryor Smoke Shop

9:24 AM

Anonymous Anonymous said...

Altough you are both disappointed, you have choosen the right course. We know where you get the best treatment stay there and get it all sorted out. you will be home before long. Bruce it is a struggle but I have been able to keep Racheal from flying. I`ll keep up the guard. Our prayer also go up for the young Mother as well as both of you. Hugs NAN

10:54 AM

Anonymous Anonymous said...

Girl, you have made the right choice to stay where you are. Things will continue to improve, for you are a tough bird!! LOL! Your family and friends want you "Complete". And you are almost there. Have a wonderful Fourth.
God Bless you Both!!


1:38 PM

Anonymous Anonymous said...

Sounds like a good idea to stay in Rochester and enjoy the fireworks there. You will have plenty of time to celebrate back in OK when you get home. Miss you terribly. Nantucket says hello! Missed you last weekend when I was back.
Lots of Love!

6:04 PM


Post a Comment

<< Home