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Monday, March 24, 2008

Day +75 Xplant Just in Time, Go Reds & Big Red

Go Reds!
Only positive changes to report this last week. My hemoglobin counts are ticking upwards instead of in wild fluctuations. It's up to 12.1 today which is approx 86% of the lower end of the normal range and 81% of my last normal reading in a 1999 blood test. It was 6 years after 1999 that I got my next blood test and got the Myelodysplastic Syndrome (MDS) diagnosis. My hemoglobin at that time was 6.1 and I was very, very tired.
Last December my white blood cell and platelet counts were in the normal range and the Hgb count was terrible. At this time I've have the reverse problem. Hgb is gaining but the WBCs are stuck in the mud. Today my doctor told me not to worry about the WBCs in the mud. He said the white cells are the hardest cell line for the stem cells to get re-established. So, apparently they will rise more slowly that the other 2 cell lines and I'll just have to keep avoiding opportunistic infections. I can deal with doing that; compared to where I could be right now. In 25 days I will reach another milestone, passing the 'Acute GVHD' stage. The word Acute in medical lingo refers to "coming speedily to a crisis". The upcoming phase 3 of the transplant experience is known as the 'Chronic GVHD' phase. Chronic in medical lingo refers to symptoms that "progresses slowly". If you had to choose acute or chronic, chronic is definitely the way to go. It's beginning to look like I'll pass the Acute GVHD phase without a hiccup! That's me talking not the doctors. They will NOT venture a sentiment such as that at this time because they've seen it all. But I cant resist thinking that going this long without the slightest sign of GVHD must be a good thing. My end of phase 2, 100 day milestone celebration will be tempered by having to get another bone marrow biopsy.
I want to mention that I'm on a clinical trial with a new drug meant to prevent the establishment of a normally dormant virus called Cytomegalovirus. The drug is called Maribavir. There is actually a 33% chance I'm taking a placebo instead of the study drug. But so far I havent contracted CMV from my donor who tested positive, so maybe the drug is working. Around 70% of everyone carries CMV. With a compromised immune system CMV can cause all kinds of bad things to happen. Normal immune systems keep CMV in a mostly dormant state. I have around 4 weeks left on the Maribavir trial.

Xplant Just in Time
I was looking at my bone marrow report from Feb 7 and just noticed it talked about my previous bone marrow biopsy from December 21, 2007. What I just learned is that the December test results placed me in a different categorization of MDS. My MDS categorization prior to December was RCMD which basically means that all 3 of my stem cell lines were messed up. The December report, of which I now have a copy, states that I am now re-categorized as CMML. This stands for Chronic Myelomonocytic Leukemia. The reason for this change is that my old stem cells were starting to crank out too many Monocytes, a behavior indicative of Leukemia. CMML is more serious than the RCMD classification. For me it meant that my MDS was evolving to dangerous forms. Acute Myeloid Leukemia (AML) may not have been far off on my horizon. The good news is that my old MDS classification doesnt matter anymore. My Feb 7 bone marrow biopsy report says "...there are no morphologic indications of persistent CMML." As a matter of fact there are no indications of MDS at all!

So what does one do when one is confined to ones house for days at a time? Well, this one counts his blessings. Highest amongst them is my appreciation for all the prayers, support, and inspirations from all of you. I totally credit my ability to survive the horrendous month in the hospital to your help, starting with the wonderful hands-on help from Cathie, Grandpa, Grandma, Maddie and Dylan. We are all one family when we care about each other and take the time to reach out. This experience has been and continues to be a lesson for me in how powerful we can be when we direct our inspirations and love towards others.
What else does one do when house-ridden? Well, last weekend there was a lot of watching the NCAA basketball playoffs. This is especially exciting when ones wife attended UW Madison, where the Badgers (Big Red) play. They are in the sweet sixteen! We also had a good run here in San Diego with the mens and womens teams from University of San Diego. The mens team lost in the 2nd round. Other than the above I spend my time reading, walking (with mask), and puttering. My pre-transplant levels of energy are still illusive but I understand the energy will eventually return. And I mean return all the way to my pre-MDS days!


K&L said...

What a wonderful Easter message! We couldn't be happier for you and for Cathie and the kids. "Red" is definately the way to go!
Keep it up,
Katy & Larry

Pat H said...

Hey Jim,

Your news is so awesome ! Thanks for keeping us up-to-date. Reading your posts continues to give me a
renewed appreciation of life.
Oh yes......& GO BIG RED !!!!!!!!!!

Pat H.

Anonymous said...

We are so glad to hear the good news!! Thank you for keeping us posted. Take care and we love you lots!!
Derek, Shelli and little Parker :)

Mike B said...


Looks like the good news keeps a coming. Glad all is going well and such a significant milestone is close at hand. My thoughts and prayers continue to be with you and the family. Keep up the good work.

Mike B

Pallavi said...

Hey Jim!

I was away for a little while, so I didn't get to catch up on the past few postings until now. Great news!! I agree with you - doctors are cautious in what they say. Go with what your heart beleives - that the next milestone isn't far off!

Your progress is wonderful news. Thank you for sharing.

Anonymous said...

Hgb of 12.1! That is awesome! My dad is so envious of that number! And to be rid of MDS altogether, that is just another blessing. I can't believe that your MDS evolved to CMML. It is very scary how the disease can just transform.

You are my inspiration! Thanks for sharing your posts with all of us!

Duane said...

Go Big Red!!

BTW, how did you get that green sticker on the top that highlight your post-transplant days? It's very cool!

MNladyslipper said...

This is fabulous news! You are an inspiration to many. We keep you in our thoughts and prayers!

SoftwareEngineer said...

Glad to see things are still looking good for you! You've been in our prayers.