My Latest Lab- All Good
I still am a patient. I still get IVs. The nurses still blow the occasional vein. I still get enough blood drawn to decorate the set of a slasher movie. I still sit in the infusion chairs for hours every 4-5 weeks to get my IVIG. I still fly to Ohio every 3-4 weeks to pick up my ibrutinib, and when I get there I still get poked and prodded. I still get CT scans every 90 days, and bone marrow biopsies at least one a year.
I still need to protect my veins and my kidneys and liver from all the various medical ministrations that I receive so often.
I still worry about what the tests will show, despite my best efforts to do the Zen thing and detach. It's because I have just seen too many CLL friends on cruise control, get kicked in the teeth by a surprise finding. MDS, Richter's, a secondary cancer, a heart tissue, a sudden massive drop in hemoglobin or their platelets or neutrophils, or huge bump up in their lymphocyte count.
Today I talked to a long time friend who was in remission for six healthy happy years after minimal therapy (very little chemo which was quickly stopped due to side effects, mostly rituximab), and after a wonderful and vigorous vacation that including surfing and scuba on the other side of the world, came back feeling just fine, only to pass out at home, wake up to big bruises, single digit platelets, missing in action neutrophils, and a hemoglobin in the sevens.
CLL can do that. The Grateful Dead in the lyrics of Uncle John's Band nailed it: "'cause when life looks like Easy Street, there's danger at your door."
Maybe the story will be different with ibrutinib, GS1101, and ABT-199. Their mechanism of action is so different from traditional cytotoxic chemo-immunotherapy, there is good reason to believe that they will alter the national history of the disease and how it might relapse. Maybe in the future, we won't get blindsided by an out of nowhere cancer coming back to get us, like some psychopath seeking revenge.
But that is a tale yet to be told.
I would prefer to just be an objective reporter, bringing from ASH and beyond, the news, good and bad on CLL and its cousins and complications, but I have skin in the game.
That is the tap root of this blog. For me, CLL is personal. I am involved and passionate about CLL because I have CLL.
Right now, the general news from ASH is good, but the personal news from my infusion chair is even better.
WBC 8.6
Hgb 14.0
Platelets 390
ANC 5.8
ALC 1.2
That's pretty darn normal. Hasn't looked this good in years.
And I pretty darn happy.
A good way to start to the new year.
I still need to protect my veins and my kidneys and liver from all the various medical ministrations that I receive so often.
I still worry about what the tests will show, despite my best efforts to do the Zen thing and detach. It's because I have just seen too many CLL friends on cruise control, get kicked in the teeth by a surprise finding. MDS, Richter's, a secondary cancer, a heart tissue, a sudden massive drop in hemoglobin or their platelets or neutrophils, or huge bump up in their lymphocyte count.
Today I talked to a long time friend who was in remission for six healthy happy years after minimal therapy (very little chemo which was quickly stopped due to side effects, mostly rituximab), and after a wonderful and vigorous vacation that including surfing and scuba on the other side of the world, came back feeling just fine, only to pass out at home, wake up to big bruises, single digit platelets, missing in action neutrophils, and a hemoglobin in the sevens.
CLL can do that. The Grateful Dead in the lyrics of Uncle John's Band nailed it: "'cause when life looks like Easy Street, there's danger at your door."
Maybe the story will be different with ibrutinib, GS1101, and ABT-199. Their mechanism of action is so different from traditional cytotoxic chemo-immunotherapy, there is good reason to believe that they will alter the national history of the disease and how it might relapse. Maybe in the future, we won't get blindsided by an out of nowhere cancer coming back to get us, like some psychopath seeking revenge.
But that is a tale yet to be told.
I would prefer to just be an objective reporter, bringing from ASH and beyond, the news, good and bad on CLL and its cousins and complications, but I have skin in the game.
That is the tap root of this blog. For me, CLL is personal. I am involved and passionate about CLL because I have CLL.
Right now, the general news from ASH is good, but the personal news from my infusion chair is even better.
WBC 8.6
Hgb 14.0
Platelets 390
ANC 5.8
ALC 1.2
That's pretty darn normal. Hasn't looked this good in years.
And I pretty darn happy.
A good way to start to the new year.
Labels: good news, ibrutinib, IVIG infusion, lab results, surprise
posted by Brian Koffman at
2:12 PM
13 Comments
