Thursday, January 28, 2010

5 Month Anniversary of Mini Bone Marrow Transplant

So the transplant is behind us and it was indeed a journey to be sure. My husband was in the hospital for a total of 39 days. Admission was one week before the transplant which was done using bone marrow not peripheral blood - more common as we came to find out. The chemo given pre-transplant consisted of fludarabine and melphalan.

The time spent in the hospital was one of the most intense and hardest things we had ever endured, but it went amazingly well, all things considered. I met so many incredible people - nurses, aides, doctors, other BMT patients and all their family members. On the same floor were other leukemia patients some of whom did not leave the hospital and I felt the pain and agony of their wives and children as they prepared to take them home to say good bye.

As far as complications and side effects, of course the usual happened. His counts were very slow to come back up and at times this was very discouraging. We were told this was due to the usage of marrow and also his age (65.) But with the help of growth factors and a few bags of blood and platelets, they did finally get up to a point where he could come home. That was one happy day, but at the same time, the day I joined a profession I had no interest in - Nursing! Administering IV magnesium, flushing of 3 central lines, changing a dressing under 'sterile' conditions, taking vitals and just watching him like a hawk was a challenge like no other I had ever experienced.

Some way, some how, God gave me and my husband the strength to endure the days to come as we counted down to the first milestone - Day 100! He was taken off immuno-suppressant drugs earlier than usual because once again his counts were slow to come back up.

Fast forward to today - 5 months later and 5 bone marrow biopsies and mixed chimerism tests later - all news is good! Last tests showed no abnormal blast cells (no evidence of CD52 on the Flow Cytometry) and donor cells on the increase in the immune system. GVHD has been limited to a few episodes which included a slight skin rash, minor eye irritation (did not last long), a period where his liver function tests went off the charts and his Eosinophil count was above normal. We are now praying that was what they want to see - a little but yet enough to cause the GVL effect. He had his central line removed this week and that was another day to celebrate!

For anyone contemplating this procedure upon recommendation from your medical team, I would suggest you get second opinions, make sure you have a solid support team ready to be there for you during and after you come home, and most of all have a positive attitude and solid faith to get you through the roller coaster ride.

We know we are far from done with the recovery, but feel we are on the road to what is called our 'new normal' and can resume our so called former lives when the springtime rolls around!

Feel free to contact me if you want more details as I am more than willing to share my insights with you.

Looking for Mark Vancura?

Mark Vancura was recently diagnosed with T-PLL and is, as I write, in ICU as a result of this disease. head over to his blog, CURING VANCURA which Leslie and he started, and show your support! Mark promised the doc that T-PLL was going to get an a**-kicking, and he's the one to do it. Even if things seem dire now, this shall pass, but there is a long road ahead.

Monday, January 25, 2010

In the numbers - for Leslie

I'm posting these charts as examples of the response to Campath treatment.

In this first chart, you can see that Gwen's WBC was about 160,000 when she started. It continued to rise to about 200,000 before she reached full dosage, and then began a continuous decline to the normal range. It took less than 3 weeks to reach the normal range, and treatment was discontinued after only 4 weeks.

(In this first chart, the light blue (cyan) line is Campath dosage and infusion points. Click image for larger picture)

When Gwen relapsed in July of 2003, she waited until her WBC counts were about the same as when treatment started the first time. The response this time was immediate, and her counts went down even under the initial reduced dosage. They sort of plateaued for a week or so, then plunged to 0. We thought we had it beat again, but within days it had rocketed back up to 200,000, and Campath was discontinued and fludarabine was started. Now the counts really rocketed up, reaching almost 500,000 - that is, 50% of the blood being white cells. You can see how it drops off, goes up, and drops, and goes up - this reflects leukopharasis, not the fludarabine. Leukopheresis is filtering the blood to remove white cells, much like dialysis.

(In this second Campath is in blue, Fludarabine is the magenta "x" and the brown dots are "CHOP." Click image for larger picture)

It took one treatment of "CHOP" to take Gwen's WBC to normal and she walked out only days after I'd been told to make funeral arrangements. CHOP, however, is a "salvage therapy," only effective for a short time and resulting in destruction of the spleen.

Leukopheresis machine:

We had expected that a second treatment in the case of a relapse would be as effective as the first. It had been learned that the leukemia cells sometimes change from a CD52 to something else, and that makes Campath ineffective. Now, I can't tell you what that means, only that if you are reading this today in regard to a patient with T-PLL, you have options for transplant that were not available to us, and for this I am very happy for you.