No Surrender

Another eventful morning for us - Phil woke up nauseated and had dry heaves which has been the norm for over a week now. I suggested we shower together because he was vey unsteady and that way I could make sure he wouldn't fall.  By the end he was totally exhausted and had to go back to bed for awhile.  He was nauseated again and we ran late to the appt.

Dr. Kossman took a good look at him and reexamined all his nodes and systems.  The supraclavicular node measured 2 cm still but the axillary one is 3 cm at it's longest.  His liver span is 1 cm down from it's maximum of 4 cm when he was hospitalized for the out of control blood sugar.  His spleen is tender but not enlarged.  His wt today is 190, up from 185 last week but is falsely elevated - that 5 lb difference represents water weight since he is hardly eating and has 3+ pitting edema in his feet and ankles, extending just to above his knees.

Of major significance, his platelets were only 22K today after being transfused on Friday.  They were 20k on Friday before transfusion so are rapidly being destroyed.  Also, it's been 4 days since his last thorocentesis when almost 2 liters of fluid were removed from around his left lung and he's now got about 3 inches difference in dullness to percussion again.  This is the shortest interval yet in which his pleural effusion has developed.

The low platelets are Kossman's biggest concern today. It's hard to tell whether they are low from the Campath or from lymphoma in the marrow without doing a bone biopsy.  But if there is active disease elsewhere it is very likely to be in the marrow as well.  So, we're at a philosophical junction again. Do more Campath and risk a further plummet in platelets? Or stop Campath and watch platelets for a few days then restart treatment (risking further time with unopposed disease)?  And how do we best judge the overall effectiveness of Campath?

Dr. Kossman also spoke the words "we're running out of bullets" and mentioned the drug Romidepsin as the real last resort.  It is for cutaneous T cell lymphoma and maybe an orphan drug (approved for only one diagnosis) for that matter and not to be approved by insurance.  It's in the $10k range per dose which, without approval or well documented studies regarding efficacy, presents a whole additional set of philosophical questions.  Anyway, he told Phil he thought the disease had reduced by about 50% on Campath but was still very active and he still has significant issues with the effusions, edema, platelets, continued marrow involvement and nodes in chest, neck, axilla that aren't fully responding.  He says most patients have full response by 12 weeks but that after 12 DOSES it is usual to reevaluate.

Phil chose to go on with treatment today.  It is going to be a Herculean effort on his part.  Tomorrow will be Ambisone.   Then Dr. Kossman will see him on Wed. and recheck the CBC.  Otherwise, Kossman wants to give the last 2 doses he has here in the office (IV) then re-evaluate where Phil is and where to go at that point.  

And that's the update for today. I'm tired but managing. The kids are struggling and crying more often. They are sensing what is going on and are very aware of Phil's diminishing capacities. We all are and it gets more difficult to watch as the days pass. We love him and see him fighting and hope he will get better. Those of us who know him well can imagine a scenario wherein he'll never say quit. Can see the circumstances dictating the outcome for him rather than him ever crying "Uncle". Such is the way of my warrior. No surrender.



Sent from my iPad

Sent from my iPad