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A Rash Decision

Posted by Frederick Wasti
Oct 23 2012

In my last blog entry ("Scales of Injustice", from yesterday), I described the seborrheic dermatitis rash that I'd been fighting over the past few weeks, fortunately with apparent eventual success. However, starting last week, as the seb-derm finally seemed to be coming under control, I have developed a different sort of rash over much of my body (fortunately not including my face and neck, so at least it isn't very obvious to the outside world because of the blessed miracle of clothing).

As I recall, this new rash started showing up on late Wednesday. At first it appeared as a splotchy red rash slowly developing on my upper chest and upper back, which I at first attributed to an "extension" of the seb-derm rash. However, by Thursday afternoon, I started noticing the splotchy red rash also on my arms, and then on more of my torso and on my upper legs, and I finally decided that this was certainly not the same rash as caused by the seb-derm (for one thing, there did not seem to be any scaliness involved). I then began to think it might be what I then called "incipient hives", in that it looked more and more like the hives that I developed on Melnea Cass Blvd while driving to Dana-Farber back on the Wednesday morning of my second week of Part B, although it did not (yet?) have the yellowish "blisters" that appeared in that instance.

If you are unfamiliar with hives (also known as urticaria), there is a pretty good introduction to the condition in a Wikipedia article.

Since I was given Benadryl right away when we got to D-F that morning, and I was told to begin taking Benadryl, Zyrtec, and Tylenol every night ever since to hopefully prevent a recurrence of hives, I took a couple of (generic) Benadryl tablets (50 mg total) on Thursday afternoon, hopefully to head off any further development of the "incipient hives". Since the Benadryl did not seem to have much of an effect, though, I emailed my primary nurse practitioner (Michele Walsh) and my doctor (David Fisher) about the situation on Thursday evening, so that they would have had a chance to think about this new development before I arrived at D-F on Friday morning for my regular injection of Alemtuzumab.

Upon examination on Friday morning, Michele and Dr. Fisher thought that it might possibly be hives or possibly an infection, and Dr. Fisher did also suggest that one possibility might be a long-delayed reaction to the Bactrim (Sulfamethoxazole/Trimethoprim) antibacterial that I've been taking every day since the start of Part A last March - he explained that Bactrim is sometimes tolerated well for a fairly long period of time but does sometimes bring about a surprise delayed reaction. However, probably since I had just been treating another likely immune-suppressed fungal infection on my head (the seb-derm), my new rash might also be a fungal infection, and so I was given a "chance" to try a different topical antifungal cream called Ketoconazole (trade name Nizoral) on the rash.

So, Diane had the "lucky" task of spreading rather large quantities of Ketoconazole, morning and night, starting on Friday and continuing through the weekend. Unfortunately, the rash did not seem to respond to the treatment, and it continued to worsen (it had spread to more areas, it had "filled in" some of the areas between the "original" areas, so that affected areas had become more "dense", and the itching from the rash has become a bit more annoying, especially at night, when it sometimes did keep me awake). So, I sent another "heads up, FYI" email to Michele and Dr. Fisher on Sunday night, so that they'd be up to speed on my condition first thing on Monday morning, even before I arrived at D-F. (Michele informed me later on that my situation had been, in fact, the #1 topic of discussion among the entire group of clinical trial team members that morning.)

So, when I arrived at the infusion area on Yawkey 8 (after having my usual blood test samples extracted on Yawkey 2), my regular infusion nurse, Melissa Houston, let me know that we (Diane and I, because Diane is gracious enough to helpfully accompany me to all of my appointment nowadays) should head up to Yawkey 11 to meet with Marianne Tawa (the nurse practitioner dermatologist that earlier had prescribed the Desonide topical steroid for my seb-derm) about my new rash.

Marianne took a good look at my new rash, and suggested that it might possibly be a fungal (or other) infection, but that it also could easily be a hives-like allergic reaction to one of my drugs. While she was examining me and discussing all of this with me, Michele Walsh (my regular nurse practitioner) called on the phone and asked if it would be OK for her two students to come up to see what was going on during the exam, and (especially since I have spent time with these two young ladies previously, as they often followed Michele around on her rounds) I agreed (it's for education, right?). Marianne then asked if I would mind if she performed a "cookie-cutter" biopsy on an area on the side of my torso, and of course I agreed. (She said it would possibly help in determining the cause of the rash, which certainly made a lot of sense.) So, we all got to watch Marianne take a disk of skin tissue out of my side, closing up the round hole with a single stitch (to be removed later). At least I still had a "johnny" covering much of my body while stretched out on the examining table, so there was at least a pretense towards modesty at the time.

Next, Marianne asked if I would mind if one of her assistants joined us to take some photographs of my rash, since it could be an important addition to the clinical trial data, and of course I agreed (it's for the good of research, right?). OK, so another young lady entered the room (which I was becoming more and more aware was not really all that large), and I got to stand and "pose" in my "skivvies" (oh, and my socks, too - <grin>) in a room full of women, while one of them carefully took nine photographs (one of my wrist ID band, two of the front of my body, two of each side, and two of the back) - any pretense to modesty at this point had been left on the exam table along with my discarded "johnny". (Marianne would have the photos emailed to all of my medical team - I just hope they don't make it to Facebook or YouTube - <grin>.) Let's just say that, primarily because of the rash now covering most of my torso and arms and much of my legs, I did not present much of a pretty picture. But, I think I was a pretty good sport about it all, and, if there were any tears shed over this impromptu exposition yesterday morning, they were not mine (but maybe they should have been) - <grin>.

Anyhoo, getting back to the serious medicine: Going on the assumption that the rash might be caused (perhaps hopefully so, because something could be done about it) by an allergic reaction to the Bactrim, Marianne had me stop my daily Bactrim dose, and she prescribed a 16-day Prednisone "taper" (60 mg for the first three days, 50 mg for the next three days, etc., ending with one day of 10 mg, all as oral pills), so that this steroid would help calm the rash down while we tested the Bactrim hypothesis. Otherwise, the plan was to continue the trial protocol, and so it was back to the infusion area on Yawkey 8 once again.

However, when I arrived at Yawkey 8, Melissa Houston informed me that there might be a change for the day - since the rash might possibly be caused by Alemtuzumab, it might be necessary to not administer the drug on that day. So, I was put on a brief hold until a decision was finally made. I learned later that the problem was that the rash was classified by Dr. Fisher (working from those emailed photos of it) as a "grade 3" rash (that is on, I guess, the rash Richter Scale), and the trial protocol does call for stopping therapy for grade 3 side effects. However, Dr. Fisher did apply, I assume to Dr. Jennifer Brown (the clinical trial's primary investigator) for approval to continue treatment, at least for the day, because the rash might be caused by Bactrim and not by the actual CLL treatment. So, I was finally given my premeds and my injection of Alemtuzumab without further ado.

However, I was then informed by my protocol nurse, Karen Francoeur, that, since the results from my bone marrow biopsy from a couple of weeks previous (that I'll talk about in an upcoming blog entry - I promise) were really pretty good, perhaps the best thing for me would be to end the intense therapy of Part B and to be graduated into the two-year-long Part C, starting next Monday, or so Dr. Fisher then had been thinking. Or, I could start Part C with the intent to transition as soon as possible (probably this winter) to undergoing a stem cell transplant (a.k.a. SCT - a.k.a. a bone marrow transplant, a.k.a. BMT). This news, along with all the other events, and all the other decisions and "re-decisions" of the morning, had by then caused an overwhelming case of the "mixed feelings" - Whew!

On the one hand, it was, I guess, Great News to be told that I had been graduated from Part B ahead of time (since Part B was supposed to last until late-December, shortly before Christmas), and, since Part C requires my presence at D-F only one day every other week, that would certainly be much easier to take than the three-days-per-week protocol for Part B. However, there are some factors that come into play due to such an early graduation to Part C (which I will cover further in another upcoming post - yes, I promise). However, do let me point out a couple of misgivings right here: First, while my most recent bone marrow biopsy results (obtained at only the halfway point of Part B) were very good (and, in fact, "the best yet"), they were not quite as good as I had hoped for, especially if they were used to help decide that I could stop Part B and to start Part C. Second, by moving to Part C now, it would force me into having to decide whether to use that graduation to transition to a stem cell transplant (or not) sooner than I had been assuming all along that I might have to make such a serious (!) decision. Unsettling? Yes indeed.

But, as we headed home after such an unnerving morning, the story for the day was still not yet over. Just as we stopped at the drug store near home to pick up my Prednisone prescription, we received a cell phone call from Karen Francoeur saying that Dr. Brown had also felt that, while my biopsy result numbers from a couple weeks previous, while quite good, they were not quite as good as she would like to see for concluding Part B, and, therefore, Part B ought to continue for at least a few more weeks, whereupon another biopsy could be performed to see if I could then be properly be graduated to Part C. So, I'm back on track in Part B again, at least for now.

"Whew"? How about "Whew-Squared !!!"?

Please stay tuned - The saga continues...

Categories: Leukemia