Four days in hospital for culture-negative febrile neutropenia

My onco and the infectious disease specialist who saw me in hospital think the migratory bone and or muscle pain was part of the illness that reached to a new height last week with fever to 102 and general malaise necessitating hospitalization for the routine IV antibiotics to cover the usual suspects.  Had chest CT again as cough got a bit worse and was productive; it didn't show much different from the last - some nodular peribronchial thickening not pathognomonic (I love this typically high brow med word which means characteristic of ...) of any cause of lung disease or pneumonia.

The fever vanished after the first few hours, the cough got more prominent but not really any different than my usual and my arm pain gradually decreased. Blood cultures were negative, the docs presumed virus (not the flu though as they checked for that) and so went home yesterday.

Have today to rest up, help my wife clean and cook for T-day (her daughter, son-in-law and grandkids coming from upstate NY) maybe even attack the leaves if my pain stays under control ...it is a beautiful day outside....of course it could be miserable weather and still better than being in hospital ...

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.