Next treatment planned

So, I saw Dr Porter at U Penn this past Friday and found out my marrow was still 95% lymphs, so still in relapse (enlarging nodes also confirm this). Porter was worried that there were few if any normal cell precursors so I may also have drug- induced (from prior chemo) myelodysplasia which would explain my now year-long transfusion dependence. I may indeed be better off with transplant than CAR T-cell therapy since doing CAR with a lousy marrow makes no sense. I do have 2 matches tentatively from unrelated donor search, hooray!

The next treatment to try and clear the leukemia is to be high-dose methylprednisolone, HDMP, (a corticosteroid, NOT compounded in NE, that's for sure ;-) ) along with Rituxan, to start Jan 7, since it's 5 days of HDMP with Rituxan the first day also....should that not clear up CLL in marrow, the next step would be Campath, which may be needed anyway as preliminary consolidation before transplant.

here is link to study on my next treatment, reasonable results if only 30+ % complete remission, perhaps I'll get some good luck in 2013!

Here is a portrait of the blogger's huge nodes in neck (note trying to grow full beard since with low platelets I should keep away from razor.,,)

Not going in the preferred direction, but trying for a positive attitude

So this past weekend I had no energy, and left the residual fallen leaves alone. I just lounged around watching college and pro football, and eating. Found out Monday my Hemoglobin was only 5.7 so got 2 units of packed cells and felt somewhat better. Still with arm pain and am beginning to thnk it may be related to a recent increase (sadly not a decrease....) in the lymph nodes in both axillae (under-arms). I also have a newly enlarged node in my neck on the right. All of these changes have come in about a week, here when I was supposedly improving and on the maintenance phase of my second treatment course in a year. Although my total white blood cell count is still normal these nodes suggest yet another relapse.

Am to get a bone marrow biopsy next week and to see my new oncologist at Penn, Dr Porter the week after. He had mentioned trying another treatment since clearly not completely cleared of leukemia/lymphoma with the ofatumumab course, with high dose steroids and Campath (alemtuzumab) being high on the list. Campth is yet another story that makes pharma look bad, taking it off the market so can sell smaller quantities to patients with MS, but leaving it available for CLL patients on a free, compassionate basis. Hope the U Penn oncos can get the drug for me, even though it has major immunosuppression and is better for marrow disease than nodes, hopefully with high dose steroids I can get some response. I did another search for small molecule TKI clinical trials but they all want a functional marrow which clearly I don't have, being transfusion dependent now for almost a year.....We shall see...

I will be finding out soon I hope if I have a match on the unrelated donor search, for a stem cell transplant. Thing is have to be somewhat clear of disease to even contemplate a transplant.. I tried one last time to reach out to my brother (who matches me) but have had no response, giving up on him....see envelope screen shot below, tried to make it obvious I REALLY needed his help.

 

 



 

It may be getting time for me to get going on a living will and health care proxy stuff....

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.

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.