Marrow still sluggish, need to find out why, and a new wrinkle in my travails

I got my first of 4 monthly planned maintenance Arzerra infusions earlier this week but the week before was crazy. I woke up middle of night Thursday with severe left upper arm pain, and wondered if this was heart attack. But no chest pain and pulse normal so decided to wait it out, it disappeared mostly in several hours, but when awoke in AM had what I thought was bone pain in both upper arms and right leg. Discussed with onco fellow and they thought it was my leukemia acting up, I of course along with a fellow employee/doc also a pediatrician had hopes it bespoke of marrow recovery, similar to how those getting Neupogen for stem cell harvest get bone pain. Pain got worse not responding that well to Tylenol and Tramadol but I went to upstate NY with wife to wedding and to see our granddaughters.  Next day needed a cane to walk as right leg pain was worse and more localized to my knee (which had acted up after treatments before).  I stared my pretreatment steroids (before Arzerra) a bit early to see if helped the knee pain, and there was some effect. Pain in upper arms seemed to be more in the joint also..Had to use platelet-poisoning naproxen or ibuprofen as well to touch the pain, rated as high as 8/10 at times, both drugs which of course could exacerbate bleeding with my usual low platelet count. Very frustrating as the weather was beautiful and I have so many many leaves to rake up around our property but no way I could use a rake or even the tractor pulled lawn sweeper with my pains and aches. Forced to watch college and NFL football in family room on couch all weekend, don't ask how my teams did ;-(

Saw my onco team the Monday AM and with the even higher dose of Decadron the night and morning prior I had no pain in arms or legs or findings on exam...they ran a few tests for arthritis, and had me use oxycodone/acetaminophen rather than an NSAID (to protect my platelets). I had continued pain off and on and decided to keep on Decadron until tests back.  Will talk with them again tomorrow. Is it some kind of inlammatory process in my joints due to disease or treatment? Time will tell I guess.

Saw Dr Porter at U Penn yesterday. I have, after all, been needing both red cells and platelets weekly and he is still thinking my marrow may be bothered by treatment effect (even a myelodysplasia almost) as much as a stubbon to respond leukemia. At least my spleen is down and nodes no bigger and WBC counts were running low until the pretreatment Decadron may have pushed them up (and or the crazy inflammatory thing in my joints).  Porter wants to do another bone marrow test so we scheduled for next month and we will start looking for unrelated donor. If marrow seems unable to recover as leukemic cells continue to be controlled by maintenance Arzerra. I will need a transplant but Porter would rather I get into to the CAR CD19 trial as a preferrence but not if I have a sick marrow.....

Dare I hope that my marrow is recovering?

I ended up needing several platelet and one packed RBC transfusions in the last several weeks, but my counts this week were good enough to skip both until the coming Monday, yay!  My total WBC remains low, only 6K this week, but I did not see the differential. My hemoglobin was good as it usually gets at day 6 after last red cell transfusion - 8.7.   The bottom line here is that I may be experiencing some recovery of my bone marrow, but probably I am jumping the gun. My count early next week will probably show the need for platelets but maybe not RBC.  At any rate I have not seen a platelet count over 20K since May this year, about the time of my last Treanda-Rituxan treatment. If only my marrow would start doing its job, then I could be enrolled in a clinical trial somewhere.....

Of note is that despite getting a unit of platelets the day before the Mohs surgery on my scalp, I bled badly and did not stop until almost an hour of intermittent direct pressure the evening of the surgery. I had to go to a local hospital where they used Surgicel (absorbable plant-derived cellulose pledgets that are hemostatic, learn more) to help stop the bleeding and rechecked my platelet count. It was 14k so I got another unit of platelets. My wife the RN and I were both annoyed that the dermatologists were not more concerned about my bleeding risk and should have aimed to get my plt count higher before the surgery. This is what the US and UK guidelines recommend. I suspect though that the fact I had Mohs surgery near my ear on my face a few months before with a similar starting platelet count (and a day after transfusion) the docs and I were lulled into a false sense of security. Another aspect of this is that once again there is this tendency for docs to allow a doc patient to make his own choices and be on top of all the medical issues, which is clearly not optimal.

Continued hints of progress and one more weekly Arzerra infusion

My last blood count, 2 days ago, showed a total WBC of 3.0K and again platelets of only 14K so got some platelets to hold me over the weekend. My onco decided to go for that last weekly Arzerra so would get the whole course of 7 full doses. I hope the low WBC represents continuing death of bad lymphocytes but of course no doubt also includes significant neutropenia.....

On another note the biopsy of the skin lesion on my scalp showed basal cell cancer so now I have to have my third Mohs surgery in 5 years (see this explanation on MayoClinic.com). One squamous and two basal cell skin cancers. I guess I should have worn hats more when younger...but of course CLL is a risk factor for skin cancer and then my mother suffered horribly from multiple skin cancers. Oh well the CLL in relapse is the real beast I have to deal with.

Going to try to reach out to my brother again re: possible stem cell transplant.

Maybe some progress

So its a quiet sunny warm Saturday morning and as I sit at our kitchen island eating a mid-morning snack after a walk in the Wharton State Forest behind our house with our 4 dogs and Cynthia,  I decided to go online and update this blog.

My total WBC count was up a bit this week, around 10 but this week I only needed platelets as my hemoglobin stayed above 8. On Monday I got my 6th dose of ofatumumab as an outpatient without any reaction and so this coming Monday (Columbus Day, an actual holiday at work!) I get my last (#7) of weekly doses of ofa.  I did bring up the fact I had a two week hiatus due to the leg infection and only about a quarter of the first (because of wheezing and shakes during attempted outpatient infusion)  full 2000 mg of ofa so if my onco thinks it is worth it and the insurance company approves perhaps I could get an 8th weekly infusion of ofa; we shall see. ...

I see Porter again in mid November, after I get my first of monthly ofa, most likely.  One can hope that by that time there will be some evidence of marrow recovery.

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: