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.

Friday, June 13, 2008

More Chemo (Day +791)

Jackie's scleroderma continues to progress.  It is still very painful.  Fortunately her local doc is very understanding with regard to her pain meds and she is now getting enough to help make her comfortable.

After consulting with the Mayo docs it was decided to try a course of Rituxamab (Rituxan) chemotherapy.  Some of you may recall Jackie received about 10-12 doses of Rituxan to help get her platelets back under control prior to transplant and to help condition her for the transplant.  Now we will try to reverse the process; but only partially.

She took her first course of treatment on Thursday of this week.  As some of you may recall Rituxan is created using cells from mice.  It is often referred to as "mouse juice" around the hospital.  As a result of the way it is created it often causes a severe antibody reaction when first administered.  It is a  peanut allergy type of reaction.  This was the case when Jackie received her first treatment.  Her blood pressure dropped, heart rate went through the roof, etc.  In some cases the people die from shock.  It is a very dangerous thing to do the first time.  One the body begins to recognize the mouse cells it learns to get along with them and subsequent transfusions are usually a non-event.  That was the case with Jackie.

In this case nobody could tell me if the antibodies still existed in her body.  Did the stem cell transplant kill them?  It should have!  She has a completely new immune system. didn't!  The transfusion was a non-event.  Not even a blip on the blood pressure gauge.  So for anybody who would ever happen to follow us on this crazy journey you now have the answer.  Rituxan antibodies survive the transplant.

Jackie will get four transfusions over four weeks.  As best I can tell there is one clinical study in existence for this situation.  It consisted of three people.  All three saw improvement.  One person saw minor improvement, one fair improvement, and one dramatic improvement.  This was over the course of one year.  

The disease has progressed very rapidly.  In the course of a few months it has affected most of the skin on her body.  Her arms, legs, thighs, back, are all involved.  It is beginning to show on her face and scalp.  She may also have some organ involvement as she seems to have some nausea.  She will have to be "scoped" to see if there is any GI involvement.  She is beginning to have problems with stiffening joints and walking.   We can only hope the Rituxan begins to reverse the process soon.

Should the Rituxan not work she could try long-wave ECP (extracorporeal photopheresis).  ECP would require a 6 week (minimum) stay at the Mayo Clinic as they are only one of 5 sites in the world that can conduct the therapy.   We will know much more when we return to the Mayo on July 7th.  For more info on regular ECP click HERE

I should take the time to once again remind EVERYONE that Jackie is highly immunosuppressed.  The Rituxan will make things much worse in this regard.  She is highly susceptible to disease and infection and will have no way to fight this off when the Rituxan kicks in.  DO NOT come around if you are sick or if you've been around anyone that has been sick!  Do not be offended if I ask to leave our presence, refuse to shake your hand, or give you a hug while this takes place.  We simply cannot take any chances while she is so suppressed!

Hopefully the next post will be more positive.  

Bruce and Jackie
From Nantucket


Anonymous Anonymous said...

It is good that you are reminding everyone how extremely careful they will need to be around Jackie right now. And if someone with a "bug" should come around, don't worry about offending them by asking them to leave. Your first concern has to be Jackie, and anybody who is a friend will understand and not be offended.

9:06 PM

Blogger David Arenson said...

I hope the Rituxan works its wonders here and that Jackie gets "dramatic" improvement. Keeping my fingers crossed and wishing you all the best.

4:53 PM

Anonymous Anonymous said...

How is Jackie doing? Came across your blog while googling my 5-year-old's GVHD issues. Sending luv and prayers your way.

3:25 PM


Post a Comment

<< Home