David Meets Dr. #1

Wednesday, June 30th, I went back to Dr. Chowdhary (Dr. #1 at Florida Hospital) for a couple of reasons: First to follow up now that I have completed all my tests and second so David could meet him. Over-all it went fine and we would be ok continuing treatment with him at Florida Hospital but, we still want to meet with Dr. Nick at MD Anderson. What frustrated us the most about this appointment, we can't fault him for. He doesn't know us from a hole in the wall and has a small period of time to digest and assess what we have lived with for a long time. So, he asked both of us a lot of questions. Things like "What symptoms are the most bothersome day to day? Do you understand the toxicity risks with Chemo?" He asked David to describe how I am when something is wrong, do I complain a lot and right away or not? David's answer was, "Misty told you that she noticed her symptoms getting worse in the Fall of 2009 - she didn't tell me until January of 2010." He also showed some concern because these lesions haven't been biopsied but felt better when I reminded him that the tumor on my skull was biopsied. David also told him that Dr. McClain had looked at my medical history and recent MRI and was positive, without a doubt this is LCH-CNS - he has seen it several times before. In fact, my MRI reports have it in writing that this is a rare sequella of Histiocytosis now on the brain stem. We understand, he has to cover all the basics so he can write in his report that we discussed all of this but it just gets exhausting to do over and over. (Here is a screen shot of one of the lesions. The glowing spot is a lesion - they added the text box and arrow, not me)

Results from my Lumbar Puncture and MRI don't show anything new or alarming. My biopsy from my endoscopy showed "Numerous Esophagials that are consistent with Eosinophillic Esophagitis". I had already put out a call to Dr. McClain about this and his partner called me to clarify how it relates to me. It appears to be a secondary side-effect - not to worry and yes to do the treatment. This is how I understand it. The lesions are causing muscle problems with the esophagus which causes acid reflux problems. Chronic acid reflux problems lead to this - "Eosinophilic Esophagitis" which is a build up of white blood cells beneath the lining. If it goes untreated, it can lead to Esophageal Cancer. So, I will do the treatment for 6 weeks with the inhaler "Flovent" and for the acid reflux discomfort I can take Prevacid. By secondary side-effect, he means it is not directly caused by histiocytosis but the histiocytosis which has caused lesions on the brain stem are causing problems with the function of my esophagus which then caused other problems. Does that make sense. This is how this disease works: If the lesions interrupt functions of an organ, we have to treat that part of the body for the problem it has with a specialist in that field. You can see why it takes a team of doctors in some cases.

So, not much to report other than we are taking it 1 day at a time. They are setting up my surgery for the port within the next couple of weeks. Treatment will start soon after that. We are good for now.