Monday, May 31, 2010

The back story

Because my IVIG is no longer keeping my platelets in safe territory, I needed to make a next move real quick.

There may be time in the future to figure out why, but it was now time to outrun the lions, and then later start building the fence.

Good that I had my old fall back, cyclosporin and rituximab to help me get my life and platelets back in control. The platelet data on my spreadsheet from 2007 was like a salve to my weary eyes, a steady healthy climb when I started on both drugs from the red single digit dances with death to the healthy smooth sailing of numbers that were above normal for most, but what is expected post splenectomy.

My platelets were strong and stable for over 3 years until the last few weeks, so I decided to revisit the magic of how I got there.

Remember too that the combo also knocked the feet out from under my CLL, cleaning up my bone marrow and shrinking my nodes.

I had seen this decision coming and had sent out a "what if" email.

Drs. Forman and Miklos and Byrd (whom I have never met, but was kind enough to suggest the combination in a life changing, dare I say, life saving, phone call three years ago) and Sharma (who would be trigger man on any move and who would need to carry the bulk of the burden of all the fast decisions) were all aboard and in agreement. How rare is that in the world of CLL? No word from Kipps, and Furman was not so sure. Treatment by consensus or vote. That is patently crazy.

Truth is that using those two meds was the approach I had noodled out and I asked my gurus if it made sense. Even crazier you say.

I also needed to schedule a CT scan to see the tumor load before the rituximab infusion melts the nodes.

Blessed trouble is I think the cyclosporine is already shrinking the nodes. That is the kind of trouble I like.

Then the unanticipated.

I broke out in a bright red rash yesterday morning that could to all the world be a STOP sign for taking more cyclosporin.

I ignored prudence, risked a severe reaction (don't try this at home, but I did after briefing my wife in the signs of shock) and took more and survived. Later a first class allergist and a dermatologist both informed me the rash culprit was probably the IVig, so I won my gamble.

Much more on that later. I need to sleep before my CT tomorrow, but I promised this update.

Tomorrow is huge. Results of the CT and my flow cytometry.



Blogger Dragon Slayer said...

Thoughts are with you today Brian! Make sure to keep your arms and legs inside the ride at all times!
Warm thoughts your way and a few prayers.

June 1, 2010 at 7:47 AM  
Blogger George Lee said...

my father has been drinking herbal drink that is curing his cll. i created a blog about it at

maybe its useful to you or others. tq.

June 1, 2010 at 10:11 AM  
Blogger Judy Cleri said...

Yikes.........sure wish I know what all this lingo was talking about....but know one are never far frommy thoughts and prayers.

Judy C

June 1, 2010 at 10:38 AM  
Anonymous Haim Beliak said...

Much love and admiration for your courage, brains, and Yiddishe kopf.
Many psalms and prayers in your direction.

June 1, 2010 at 2:43 PM  

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