A curveball just out of reach...or delayed treatment due to bizarre leg infection

So now I am here in hospital, day 8 to  be exact.  A few days before Arzerra infusion #3 I had noted a a non-tender area of redness and thickened skin with a dark scab in center about dime sized on my left ankle. Walking about my property or in the woods, in shorts and sometimes with no socks, I figured it was a bug bite or a scratch from a thorn from the brambles that abound. I did not show my onco because it did not hurt or itch and I figured it was slow to heal...a day after Arzerra #3 the area got bigger, redder and began to hurt. I waited until 2 days later to show to onco since was there for follow-up CBC. Since I had no fever it was decided to try to treat this presumed cellulitis with amoxicillin-clav (Augmentin). I did not realize at the time that I was neutropenic (but my oncol did, thankfully) but in retrospect I guess a trial of oral meds still would have made sense Note that since I live in deer tick area and have had acute Lyme twice, this was one of the reasons for using amox-clav which would cover Lyme. My doc was worried about whether I should get my next Arzerra and scheduled an infectious disease consult for 2 days later. The sore area increased with more pain, particularly while walking and when I saw the ID doc he recommended admission for IV antibiotics.

Over the last week I have received antibiotics to cover MRSA, Pseudomonas and even Lyme (titers pending). The area of redness spread and the central dark area (necrotic tissue) enlarged. A skin biopsy was done and fungal cultures, nothing found yet. I have had packed RBC twuce and platelets 3 times. Needless to say the Arzerra was held.

Today for the first time the redness seems less and I can walk flat footed as opposed to on my toes. Still with pain but less, I think. Some studies still pending including Lyme titer and specail stains of fhe skin biopsy for weird bacteria like atypical mycobacteria. Going to get an MRI of the area to rule out bone involveent and or abcess underlying, hopefully today (maybe should hav done sooner but I am second guessing my docs here...)

So the best scenario for me is if continutes to improve and can get my Arzerra in a few days. My spleen is much smaller as are nodes in underarm area and total WBC is less than 5K.... so may have started to respond.

"Well now life throws us curve balls we never can reach" -- Jimmy Buffett

Third Arzerra infusion went OK, sort of..and other concerns

I was admitted to hospital last Friday so could get the whole 2,000 mg of ofatumumab if rate had to be slowed due to reaction.  My onco had me take the equivalent of 20 mg of dexamethasone (~130 mg of prednisone) the night before, which along with another loading dose of same and Benadryl we had hoped to avoid another infusion reaction. Unfortunately I did have a cough and wheeze reaction at 100 cc/hr (half the max rate) so we dialed the rate back and slowly worked up again to 100 cc/hr, but no higher as I was resigned to staying overnight. So, at 3:30 AM the infusion was complete. I got a unit of platelets as my count was 5K again, but my hemoglobin on admission was 9.5 (3 days past transfusion). My total WBC was in the 80K range which was disappointing but I was reassured that may have been due to the steroid load....

So far no lymph node decrease that I can tell but am trying to tell myself my spleen seems less palpable. Three days after the hospital stay my counts were as follows total WBC 20K, Hgb 7.5 and plts 7K. Only got platelets yesterday.

Two new issues, of concern:

• What I thought was an insect bite on my ankle slow to heal has gotten necrotic looking with some surrounding redness and increasing pain. My onco was alarmed, started me on amoxicillin-clavulinate and am to see an infectioius disease specailist tomorrow as it could be something more exotic - atypical Lyme perhaps? Have had before with a necrotic looking skin lesion rather than the typical halo appearance. Many deer ticks in the woods where and I walked the dogs in the woods almost daily this past week. Having had Lyme X 2-3 and anaplasmosis, I am very careful to check for ticks. Since one sees far fewer in the heat and humidity of July and August, I may have let my guard down. ..so far 24 hours on the antibiotic there has been no spread but it sure is painful. If something exotic or worrisome, my onco may hold my Arzerra this week, again to be given in hosptial...
• Yesterday in the onco office my weight was only 159 lb, which is the lowest its been.. I weighed myself clothed only in birthday suit  this AM and was only 153, which is about right - shoes and clothes usually weigh about 6 lb....I guess I really do have signiificant muscle wasting - cancer cachexia, as it were - and don't know if increasing calories may help. I may try the Ensure Muscle Health shakes and if I can get feeling just a bit better, ie less need for RBC transfusion may do some light weight lifitng (dumb-bells no more than 20 ob apiece)

Oh well the games go on...I am not going to feel too sorry for myself especially since I just heard a friend with lung cancer has brain mets.....

A glimmer of progress, and more on U Penn-Novartis partnership

So today I came in for a scheduled RBC transufusion, as my Hgb was 7.7 last Friday when got my second ofatumumab dose. I expected to also need platelets again especially since have had an ongoing bloody nose...got both and was delighted to hear my total WBC was down to 18.7, presumably due to the partial dose of Arzerra I recieved last week.

There was an expanded story on the U Penn partnership with Novartis in the Daily Pennsylvanian, the college newspaper.

Some excerpts thereof:

The first steps in the Penn-Novartis collaboration involve a focus on developing cell production facilities, bringing to Penn the first Center for Advanced Cellular Therapies. This new building will allow researchers to develop and manufacture chimeric antigen receptor technology for the treatment of cancer, according to Novartis’ press release. Research collaborations will also begin during the first year

The construction of new cancer research facilities at Penn will allow for the expansion of the number of patients who can be treated. “Because the clinical results were so striking, Penn had more than 5,000 patients or families contacting us wanting to enroll on clinical trials,” said Bruce Levine, a professor of pathology and laboratory medicine at the medical school

Not hard to believe since CLL is most common  adult leukemia, and justifies my prior skepticism about getting into that trial, even though the patient profiled in New England Journal article sounds a lot like me (except for the 17p deletion part, so far not applicable to me)

The patient received a diagnosis of stage I CLL in 1996. He first required treatment after 6 years of observation for progressive leukocytosis and adenopathy. In 2002, he was treated with two cycles of rituximab plus fludarabine; this treatment resulted in normalization of blood counts and partial resolution of adenopathy. In 2006, he received four cycles of rituximab and fludarabine for disease progression, again with normalization of blood counts and partial regression of adenopathy. This response was followed by a 20-month progression-free interval and a 2-year treatment-free interval. In February 2009, he had rapidly progressive leukocytosis and recurrent adenopathy. His bone marrow was extensively infiltrated with CLL. Cytogenetic analysis showed that 3 of 15 cells contained a deletion of chromosome 17p, and fluorescence in situ hybridization (FISH) testing showed that 170 of 200 cells had a deletion involving TP53 on chromosome 17p. He received rituximab with bendamustine for one cycle and three additional cycles of bendamustine without rituximab (because of a severe allergic reaction). This treatment resulted in only transient improvement in lymphocytosis. Progressive adenopathy was documented by means of computed tomography (CT) after therapy.

 Now however with this new push, many more patients could be studied, hopefully to include moi!

 

Second ofatumumab treatment

So this past Friday I had my second infusion of ofatumumab (Arzerra), this time a total dose of 2000 mg was to be given by the same slowly increasing rates, this time in the onco office. I had gotten through the 300 mg dose last week without reaction but was not so lucky this time,  about 3-4 hours into the protocol I got feeling weird with some shivering, after I had sweated profusely. The infusion was stopped, I was given more Decadron. My doc elected to send me downstairs to get platelets as once again the count was only 7K. (no RBC since did not have much time and Hgb 7.7) The only good news on my counts was that the WBC fell to 40K from 80K the week prior, presumably in response to the first albeit low dose of ofatumumab.  After getting the platelets I went back upstaris for an attemtpt to get more of the infusion, but had a sweating reaction again and they had to stop again. I probably did not get even a third of the total dose so the plans for next week are do the infusion in the hospital so can get even if takes all night...and if I need blood cells can also get. As much as I hate the idea of staying in hospital I need to get the full dose of Arzerra to get any benefit.....

Novartis to partner with Penn in development of chimeric antibody T-cell program

Exciting news yesterday:
Novartis and Penn enter into multi-year collaboration to study chimeric antigen receptor (CAR) technology for the treatment of cancer!

Here is one of the news stories from NJ newspaper.And another from a pharma news site.

See my prior post on my own visit to Penn to see if I may benefit from this therapy.

What is exciting here, as Dr Sharman points out in his new CLL and Lymphoma Blog, is that this partnership may increase access to this potentially curative therapy, not only in terms of clinical trials, as the 10 patients or so who have undergone this therapy were in a privately funded pilot study, but also to mainstream if the technique continues to be useful and is licensed by the FDA.

We can only hope this approach pans out. Some potential drawbacks are noted by Sharman and also in a post on CLLTopics, highly recommended because this therapy is not without its downside...

Started Arzerra!

To update my situation up to yesterday:

• Bone marrow: packed with small lymphocytes, no sign of Richter's
• PET scan many lymph nodes, no sign of activity suggestive of Richter's
• quite enlarged spleen, easily palpable by even myself, as well as increasing axillary nodes
• whew!
• ongoing need for platelet transfusion once weekly, at least made it 2 weeks between RBC

So from the 2 or 3 options  for treatment my onco team picked Arzerra (ofatumumab) in part because I have already had rituximab 3 times and Campath not so good for nodal disease and has significant immune suppression...

Got the first dose, in slowly increasing amounts by infusion, to total 300 mg, in hospital yesterday. Because of a high rate of infusion reactions, my oncos wanted to do as inpatient. It went well, no reaction, since they load you with steroids, antihistamines and acetaminophen. The problem was the inherent inefficiency in hospital, I arrived at direct admission office at 9, got to the floor, IV in place at 10 AM but did not get premeds until about 1:30 and Arzerra started about 2:30, and finally done at 10PM. Felt good though and elected to go home by my usual train/bus combo, enjoying the exuberance of youth, first the disgruntled Phils fans on the train (another story there, they are having a sucky year), and about 40 teenagers coming from a concert in Camden jammed on the bus. I knew where to stand so got the first seat up front, so could get off easily, home by 12:30, slept like a baby.

Next week dose of Arzerra is 2000mg and I will bend over backward to arrange as outpatient, which since I had no reaction, should be able to convince my oncologists.

Although I had blood work on admission, I forgot to ask for results -- I had profuse bleeding from IV site on removal last night requiring a pressure dressing but no problems today. Since have been requiring platelets once weekly, I will go on Monday and get another count.