Maybe some progress, but still don't know about marrow

Some good news, maybe. I saw Dr Porter at U Penn 10 days ago (have been remiss with timely posting).  He thought my spleen was smaller, in fact hard to palpate and that some of my nodes were smaller. These findings along with a total WBC count of 7.3 led him to believe I was responding to ofatumumab. 

On the other hand, my ongoing transfusion requirement (including the need for both platelets and red cells the next day after visit) are concerning. Dr Porter (and I) are worried about marrow dysplasia as a consequence of the fludarabine X3 and bendamustine. Copy of my records given to the Penn team showed my last bone marrow cytogenetics to be a bit screwy - a 13q- deletion (which is said to be good prognostic sign if present early and by itself but sadly I had other abnormalities including several cell lines with an extra X chromosome!  Porter thought this was evidence for possible marrow damage and that he would like to do another marrow exam once off weekly ofatumumab to see how the marrow looks with some (hopefully!) control of leukemia. We shall see.

I continue to need weekly RBC transfusions and often biweekly platelets. My total WBC count was down to 5.4 three days ago, so my leukemia seems to continue to respond. Since I had two in-hospital ofatumumab infusions without reaction, my onco group is going to try to do the last two weekly infusions as an outpatient, with the next treatment in two days....crossing fingers, etc.

Finally got through an Arzerra infusion without reaction! And some musings on medical rationing...

So last Friday I was once again admitted for my ofatumumab infusion but fortunately this time around I had no reaction, and left the hospital about 8:30 PM for home.  I did not need any platelets or RBCs either since I had been transfused on last admission with RBC a week ago and platelets 2 days prior. But total WBC was 33.4K and I had only 3% neutrophils. It should be noted that my WBC count a week ago, also after whopping loading dose of dexamethasone (known to increase WBC) was 79.9K so maybe my marrow is starting to respond. Next count is tomorrow so we'll see. Am to visit Dr Porter at Penn for followup in 2 days. 

The cellulitis on left leg is finally healing so looks like I won't need a skin graft. What we thought was dead tissue was probably just a lot of blood under the skin because of my low platelets.

Anyway, onward and upward.....I posted a link to an interesting NYT editorial Beyond Obamacare on Facebook and will share here as well. It is all about the need to ration limited resources in the Medicare age group. I believe it is true but at the same time the need to control costs may directly affect those of us with CLL lucky to get to Medicare age. 

Here is what I wrote on FB about this:

Rationing is inevitable, we should do it rationally, taking a page from UK NICE, and using QALY of around $50K as yardstick - I may be shooting myself in the foot with this,as my leukemia may require quite expensive treatment in the years to come....I am currently in the middle of a 12-infusion course of a second generation monoclonal Ab, which reportedly costs $9K for each infusion....If I can get 2 years remission with this, would meet the NICE criteria....

Wishful thinking re a long remission? Perhaps, since I got very little long-term response from Bendamustine-Rituximab....time will tell. I know that a clinical trial somewhere is in my future.... 

Home from hospital. long road ahead....

I went home 2 days ago (in August) as the infectious disease docs thought with negative cultures including fungal that I had had enough IV antibiotics but with my alterred immune system would need another 10 days of oral antibiotics. Still with much pain when standing or walking, but no significant spread of inflammation at least of the skin area involved.Only a bit of redness at the edges. The central necrotic (dead) area has not increased and I noted a bit of discharge after a shower yesterday.

Two days before going home I finally understood why my leg hurts so much, an MRI showed "Inflammation and fluid collection in the subcutaneous tissues and posterior muscles in lower leg consistent with clinically suspected cellulits and myositis."  That was the first time the involvelment of calf muscles ie myositis was used. Not sure if my treatment team had suspected.that but they did note calf pain, previously having ruled out a deep vein thrombosis with an ultrasound.

I am to see my onco in 2 more days, and infectious disease in 1-2 weeks.  They held my Arzerra treatment again because, I think, I had continued neutropenia and the lesion basically blossomed after my last Arzerra treatment. I had my laptop in hosptial so did a PubMed search for necrotic cellulits and myositis due to Arzerra or Rituxan, and found nothing. So final working diagnosiss is cellulitis/myosits probably bacterial and secondary to inital trauma of unknown etiology.along with neutropenia.

I was distressed to hear from one of the nurses in casual conversaton that my primary onco, Dr T, is not at Hahnemann except rarely and is instead at a Cancer Treatment Center of America hospital in North Philly. I was never told this and along with not knowing I had neutropenai the week before admission I have decided to transfer all my onco care to U Penn even in the middle of this damn leg infection and the courses of Arzerra. I sent an email to the intake nurse asking to be plugged in there. We shall see.

Warning: I am going to show how bad my leg is but to spare those who don't want to bring up a recent meal, I'll start with a few silly photos....


Me on third day in hospital and whopping steroid dose in anticipation of gettng Arzerra (later canceled though) - corticosteroid euphoria:

 

A little help with the small bit of work I did while in hospital (note the Phanatuc was gift from one of the teams I work with...and the laptop was "kindly" brought to me by my fellow editors, so I could finish a project

 

 

 

 

 

AND NOW MY VERY DISGUSTING LOOKING LEG: