Monday, July 30, 2012

Back to Columbus while listening for Zebras

It has been wonderful not to get on a plane for a full 28 days, not that I don't love OSU or Columbus, Ohio.


Not that I have been free from medical care for the last month. Back at home, I did manage to stretch out my IVIG to 40 grams every 4 weeks and still have enough gamma-globulin aboard to keep my platelets coated and protected. I remain grateful to all those unknown donors that gave their blood to produce that precious pooled blood product. It was not that long ago I was in the infusion lab every two weeks to prevent a recurrence of my dreaded ITP. There are good reasons to believe that the ibrutinib may help to calm down some of my auto-immune dysfunction. 

I also saw my rheumatologists about my arthritic knees and muscle pains. He wants me to try PT and wearing my unloader brace. I'm down with that. My arthritis is much more of a day to day problem for me than my leukemia.

Dr. Sharma, my local hematologist and medical oncologist was consulted about my progress and what if any changes I should be considering. None. He was supportive from the get go of my going to OSU and is happy that the results have been so positive.

I had an appointment with my transplant doc, Steve Forman at City of Hope to bring him up date to date, and to get him thinking about, when, if ever, I might need a second transplant.  No commitment from Dr. Forman on that subject yet. He too is pleased with my response from the trial at OSU, but recognizes we are very early in the ibrutinib story. I also had him look at my slightly clogged left ear, now bugging me into its second week. One big disadvantage of being a doctor is that I can imagine all the possible terrible diagnoses that can cause unilateral congestion in someone immune suppressed such as me. Odds are it is nothing but minor congestion from a virus. Dr. Forman recommended Afrin and Sudafed for the flight so I can equalize. No antibiotics, no steroids, not dramatics. I want it to be gone so I can stop worrying about all the zebras (famous advice given to all medical students: When you hear hoof beats, you think of horses, not  zebras). All of with cancer walk the tight rope between being over vigilant and falsely blaming everything mundane on some nasty business related to our internal enemy and being nonchalant and thus missing the early warning of a possible storm brewing. 

Really for my local doctors, it more about me talking to them about the good news happening in Columbus, Ohio.

Tomorrow, I am on a plane again to pick up three more bottles of ibrutinib 140mg to last another 28 days and to be infused with 2,000 mg. of ofatumumab. I will be staying with new friends that I met when my wife and I met when were living in Ohio. The mid-west is like that - friendly. I am very lucky indeed.

I am not thrilled with all the packing, the long flights and the waits at the airports, not happy about another infusion of ofa that probably does little for my tumor burden, but certainly lowers my immunity and always raises the risk of an allergic or other adverse reaction. More blood draws and waiting around at the clinic. Less homey raw organic vegan food and sleeping in my own bed.

But it is all it is all worth it for my dose of my magic BTK inhibitor, ibrutinib.

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2 Comments:

Blogger Dragon Slayer said...

Good news for you and your Drs. Brian.looks like thoughts of transplant are in the greater distance. We always hope and pray for you and your continued success.

Wanda and Robert

July 31, 2012 at 8:00 AM  
Blogger oh dad said...

Give my regards to all those wonderful nurses in OP Chemo - James 2.
Wally

August 1, 2012 at 5:43 PM  

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