Clink Update (Day +747)

Jackie was discharged on Monday.  We are headed for home today (Tuesday).  I can tell she will be "down" on her non-Prednisone days.  They have changed her Prednisone dosage to a total of 30 mg every other day.  On her "off" days her body will attempt to make natural steroids.  At least this is the hope.  On the off days we will probably see her GvHD flare as well.  They tell us it will be at least a couple of weeks before the CelCept will kick in and begin to make a difference.  Until then she will continue with the moist (wet!) pajama wraps.  The warmer climate of OK will probably make this a little easier than MN.  

Until Later...

Bruce and Jackie

From Rochester (but for only about another 30 minutes!)

Clink Update (Day +745)

The full-body moisture wraps have dramatically improved the GvHD rash on Jackie's arms and legs.  They are still red, itchy, and somewhat inflamed, but they don't burn and cause constant pain.  She has gone from a 24 hour per day full wrap schedule to a 3-a-day schedule.  The newest routine consists of completely covering herself in hydrocortisone (Triam) cream and then getting into wet cotton pajamas.  She then puts on a sweatshirt and sweatpants.  She keeps this on for 90 minutes.  This routine will continue on a taper-off schedule over the next several weeks while the CelCept begins to kick in.

On our first day here at the Mayo they performed a skin biopsy  on her arm.  This biopsy turned out to be a small pre-cancerous spot.  We are still waiting for the full pathology report to see if it will be left alone or if a small area will need to be burned off.  The docs don't seem terribly concerned.

We hope to be sprung from the hospital tomorrow.  Since we don't know the exact time we plan to stay overnight on Monday for a departure home on Tuesday.  We'll both be glad to a warmer climate.  It snowed here on Friday night and during the day on Saturday.  While we got only a dusting in Rochester, over a foot of snow fell in northern MN.  And these people think it is Spring???

Until Later....

Bruce and Jackie

From Rochester

Back in the Clink

Jackie is back in the hospital.  Nothing serious!  Her graft versus host disease (GvHD) gradually became worse.   It finally got to the point it was very painful.  We flew up for our usual 3 month checkup and the docs felt the best course of action was to get her into a hospital environment to treat the painful skin rash.  The rash had gotten to the point of causing blistering.  Due to the inflammation Jackie was also running a low-grade fever much of the time.  

The good news is that her blood counts are normal in all respects and there is no sign of CLL.  This is likely a thing of the past.  After two years with no relapse she has a very good statistical chance of being cured of her original disease.  Of course the GvHD is no fun and needs to be taken seriously.  The docs tell us they see the average patient needing three years of immunosuppression after transplant.  They tell us that most patients with chronic GvHD tend to see gradual improvement.  We certainly hope this is the case with Jackie.  At this point there seems to be no involvement of GvHD with other organs.  They performed a pulmonary function test this morning.  We don't have results, but I don't think anything of concern will be found.  

They are changing Jackie's meds.  She will continue with Prednisone at a slightly reduced level.  She will alternate days on and days off.  One day she will take 30 mg the next day she will take nothing.  They hope to get her body to produce more natural steroids.  In addition they will be decreasing her Cyclosporine level to 50 mg per day and replacing this immunosuppressant with CellCept.  CellCept is newer and far more expensive.  They believe it will work better.  If this doesn't work there are several other treatments that are possible.  It is possible they can treat the GvHD with some of the same chemo agent they used prior to transplant (Rituxan and Pentostatin).  They also have a UV light treatment that is only available at the Mayo Clinic (UVA 1B).  Finally they have something called Extracorporeal Photochemotherapy (ECP).  This involves removing your blood and passing it through an apheresis machine and shinning a UV light on the cells as they pass by.  It somehow improves GvHD response.  I'll have to research the issue further if this becomes an option to better understand how it works.

In any case, Jackie is doing well.  Hot oil baths with full body wrap moisturizing treatments sounds like a spa treatment to me!  I asked the nurse when they had scheduled the Asian hot stone message:)

Until Later...

Bruce and Jackie

From The Mayo Clinic

Two Years And A Day (+731)

Well, it has been two years since the transplant.  It seems like it was a thousand years ago.  We have had a lot of ups and downs along the way.  Initially we dealt with the fear of the disease and then the fear of the treatment and the cure.  In the beginning it seems we dealt with nothing but fear.  From the beginning I've covered the good as well as the bad parts of the ordeal.  That is still the case today.

We still deal with some fear.  Jackie is still having problems with GvHD.  The fear is that it will become worse.  She has progressed from a simple irritating skin rash to Stage II GvHD with painful lesions on her arms and legs.  The increase in GvHD has taken place over the preceding six months; most in the past three months.  We thought we had escaped any major transplant problems but it seems there are still some challenges before us.  

To keep the disease at bay she is on a 20 - 25 mg of Prednisone regimen.   One day she takes 25 mg and the next day she takes 20 mg.  This is supplemented by a 100 (temporarily 200) mg per day intake of Cyclosporine.  Over the last few days we have increased this to 200 mg to try and get the disease further under control.  It is too early to say how effective the doubling of the Cyclosporine will be.  One year ago she was taking only 5 mg of Prednisone every other day and 50 mg of Cyclosporine.  As her new immune system kicks into high gear problems with GvHD pop up.  The good news is that even with the compromised immune system she has been able to fight off (rather quickly) several bouts of common colds and a minor case of flu.  I'll bet if she gets back to a minimal amount of suppression her new immune system will stomp out any germ or bug that comes along in record time.

Finally she is taking PUVA light treatments.  This consists of taking Psoralen which makes the body more receptive to UV long-wave ultraviolet radiation.  A pill is taken and then you spend a few minutes in a special tanning booth.  The treatment is often used to treat psoriasis.  It has been used with some effectiveness against GvHD.  It is difficult to tell if the PUVA treatment is helping.  Her skin is very raw and seems to be sunburned.  All-in-all it is a fairly painful experience.  The Cyclosporine causes her feet to be numb and she experiences muscle spasms.  The Prednisone has caused weight gain and she is experiencing the "moon" face that is often seen with steroid usage.  Through the initial transplant she lost 100 pounds.  She has regained about half that weight.  All this in spite of the fact she doesn't eat a great deal and gets a lot of exercise.  Again, the Prednisone is the culprit.  

The doctors tell us the GvHD should improve.  They warn it will take a lot of time.  They talk about years.   We return to the Mayo in about a week.  We will see what, if any, changes will be made in the treatment plan.

In spite of the somewhat negative report Jackie has no signs of CLL.  I believe it is a thing of the past.  In spite of the pain she is living a more or less normal life.  She isn't able to do as many things as she would like and she does have a lot of frequent pain that is controlled by use of standard pain medications.   She is able to work part time.  I know this is a contradiction; living in pain - but living a fairly normal life; but this is the best way I can describe her situation.  Post transplant life certainly beats pre transplant life.  I remind her the GvHD is also providing GvL effect.

So how normal is life?  What can you expect if you decide on the mini BMT?  Tonight she is in the kitchen making Cakelettes for an upcoming food show next weekend.  That is NOT something she would have been doing 3 months prior to transplant!  So...as bad as things sometimes seem it beats the alternative.  This is just another bump in a very long road.

Until Later...

Bruce and Jackie

From Pryor