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.

Sunday, April 12, 2009

Three Year Anniversary (Easter Sunday +1095)

Today is Easter Sunday and it has been exactly three years since Jackie Sue's transplant.  Three short years ago the doctors at the Mayo Clinic hung a small bag of red cells on a stainless steel pole and our transplant journey began.  Jackie's blood counts were at ZERO and her life hung in the balance! 

I haven't updated the blog in a long time as I didn't know how many (if any) were still reading about her progress.  Somehow I couldn't not update at such an important time and date.

There have been a lot of ups and downs in the last few years.  The first year after transplant was probably the best.  She was weak but continued to see steady progress.  She didn't have any significant GvHD issues and life seemed to be good.  She lost 100 pounds through the transplant process and looked and felt like a different person. 

Shortly after the first year anniversary she began to have issues with graft-versus-host disease.  At first the GvHD was an annoyance.  Over time it has become as big a problem as the original disease.  As you may have read in previous posts she has experienced severe scleroderma-type effects.  Over the last six months these have subsided but she has some damage and scaring from the process.  The progression was stopped by high dose steroids (prednisone) and ECP (extra corporal photopheresis) treatments.  She is on a 50-10 schedule of prednisone and and a two-treatments-once-per-month ECP schedule.  

As part of the GvHD she has experienced skin lesions that are matched by lesions in her stomach and gut.  As a result of the GI involvement she has experienced leakage of bacteria into her bloodstream.  In the first case it was identified as e coli.  In the current instance (just last week) the cause was not identified.  Both required hospital stays and IV antibiotics followed by oral antibiotics.  Recently we have spent a great deal of time at the Mayo Clinic dealing with these issues.  The good news is the ECP treatments seem to be helping.  Her skin and stomach lesions have improved and have allowed her to decrease steroid dosages from 50 mg/day to the current 50-10 dosage level.   As a result of the steroids she has experienced a significant level of steroid side effects.   She has puffiness of face, the classic "buffalo hump" at the top of her spine, and a redistribution of fat from hips and thighs along with weight gain.

In addition she has faced a number of small skin cancer problems.  In one case it required a skin graft and Moh's surgery to eliminate a cancer that grew on the top of her hand.  She has had a number of small cancers burned off.  Each month there is always new biopsy or cancer to be dealt with by her docs at the Mayo.  Naturally these open wounds are sources of infection and a constant source of worry for an immunosuppressed patient.

The good news is that she is completely free of the original CLL.  There are no hints that it will ever return.  In almost all respects her blood counts are entirely normal.  A standard CBC never shows anything "out of range".  This, of course, is a relief.  The docs also tell us that given her level of GvHD it would be highly unlikely to see a relapse.

Finally the docs tell us that GvHD tends to get better with time.  The "magic" time period seems to be 5 years.  For whatever reason most people tend to improve with time.  Their bodies learn to deal with the new, foreign stem cell invaders.   In many cases the immunosuppression can be reduced to much lower levels and life becomes more normal.  So...I hope to update this blog on the 5 year anniversary and report that things are dramatically improved and the GvHD we deal with is under control.

So, that's it for now.  Have a Happy Easter!

Bruce & Jackie
From Pryor


Blogger John Wagner said...

And a very Happy Easter to both of you, too. I have followed Jackie Sue's journey on this blog almost from the beginning. I know it has been a very rough journey. I am happy to read there is no sign of the CLL but sad to see she is still dealing with such terrible problems with GVHD. I certainly hope this problem fades long before two more years pass. Thanks so much for updating and please do continue to keep us informed.

11:18 PM

Blogger David Arenson said...

Thank you for sharing your journey. Rough as it has been at times, it is a true, honest picture that shines light on the path many of us will tread. I am glad to hear the GVHD is improving and hope, with you, that it can one day be reported here as a thing of the past. All the best to both of you!

2:18 PM

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11:10 PM


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