Monday, November 5, 2012

3 YEARS, 5 MONTHS, 4 DAYS: Goin' Pretty Good

Top Line: Chronic GVHD persists, but MAC is vanquished, meds are beginning their downward adjustment, and Susan feels mostly decent  most of the time.

It was two weeks ago (10/22) that Susan made her most recent Boston pilgrimage. Life (no excuse) and Hurricane Sandy (subject and blogger both without power) conspired to delay this posting, but now, here it is. Had there been truly urgent news, I would have found a way. Fortunately, the ship of recovery continues to sail on an even keel.

Susan and Bob actually stayed over in Boston that Sunday night, given a 10:30 start of appointments and a very packed day.  The rounds began for her at MEEI (Mass Eye & Ear Infirmary, but she only needed the “eye” part), where she had blood drawn to centrifuge into the serum base for her designer eye drops.  These are the ones that have to be kept refrigerated, so some attention to logistics is required, but they really do provide relief. One of the minor impacts among so many horrendous ones attributable to Sandy, is that the drops, although ready, are being held frozen up in Boston until the Siegels are confident that UPS is again delivering normally without risk of delay (and spoiling of the frozen drops).

Then it was over to Dana Farber and phlebotomy for more blood. She wasn’t able to make it there in time for her 11:30 slot, so she lost her place in the queue, had to wait some, and the domino effect scrunched her subsequent appointments. She was late for her 12:30 with Dr. Soiffer, bumping up against his 1PM commitment, with blood work results just beginning to trickle in (wordplay – blood/trickle – intended, as always).

Soiffer was pleased with how Susan looked upon examination, but their meeting was abbreviated and the information available to Soiffer was incomplete. From what he could see, the numbers were decent except for some anomaly on kidney function, which will have to be monitored. Susan’s to check it again in NYC in a month (now, two weeks).

The good news outcome here was a net reduction in medications: based on  good liver function levels, one liver med was eliminated altogether (although another was increased some), and her prednisone dosage was reduced from 10 to 7.5 mg. And in the good news vein, note, it had been 4 months since her last DFCI visit, and her next visit will be scheduled for about 3 months out. Remember when she was going up every week, and then every 2 weeks, and so on. This is goodness.

Next, it was over to Brigham & Women’s Hospital to see Dr. Triester, the oral oncologist. If you remember, in the previous blog posting, we mentioned that Susan was afflicted with a verruciform xanthoma, an uncommon, but not unheard of, fellow traveler with GVHD. This visit Dr. Triester removed it. The biopsy results have come back negative. Good. Susan is now decidedly more comfortable in the oral region, tolerating a wider variety of foods, and eating with a better appetitie. Also good.

By the way, and to round out the day, she also received her flu shot while she was in Boston.  Remember George Burns, who famously said (to paraphrase): At my age, when I bend down to tie my shoes, I look around to see if there’s anything else I can do while I’m down there.

Finally, and unrelated to Boston or Susan’s recovery, she has developed a squamous cell carcinoma on her face. Unlike a melanoma, a squamous cell carcinoma is usually not a cause for concern if it’s caught and attended to early. She’s been planning to have it removed and biopsied here in NYC. However, in yet another instance of Sandy’s reach, the NYU Medical Center Hospital, out of which her dermatologist works, has been shut down temporarily, postponing Susan’s attention to this matter. Of course, she’ll reschedule for the earliest possible opportunity.

Check back in about 3 months, folks for the next status update.

Wednesday, July 11, 2012

Happy Anniversary 3.1.09

Top Line: with the MAC brought under control, meds levels readjustment led to a rocky GVHD patch, but the protocol has finally been tuned to where Susan is feeling decent.

First, two Dana Farber visits and a big anniversary have slipped by without having been blogged. Mea culpa. Mea maxima culpa. If I were my sister, I’d dock my pay and put me on notice.  I’ll try to be even more wordy than usual in this posting to compensate for the shortfall.

So, what did you miss while the blogmeister was asleep at the switch? Disregarding chronological order, let’s celebrate (a day late, a dollar short, and after the fact) the third anniversary of T-Day. Don your party hats and grab your noisemakers. Now, look silly and make noise in recognition of this milestone. The further in time Susan is removed from the date of her transplant procedure, the more auspicious it is for her long-term health, chronic GVHD notwithstanding.

Now speaking of GVHD, you may remember that Susan had developed MAC (mycobacterium avium complex – say it fast five times) a tuberculosis-like disease, for which she was being treated with a drug protocol that interacted in somewhat unpredictable ways with her usual meds regimen, requiring a bit of trial and error to get all the factors tuned properly.

More specifically, doses of her two major GVHD medications – prednisone and tacrolimus – had to be roughly doubled during her treatment for the MAC attack. When she was pronounced ready to discontinue the MAC stuff, her docs reduced her other meds back to more or less pre-MAC levels, with the intention to reduce dosages further over time as her condition allowed.  For those concerned with the timeline, this was the first unblogged DFCI visit and took place a couple/few months back.

Then came the anniversary. But even before the anniversary, Susan was not doing well. Resurgent GVHD, manifested primarily in the mouth, eyes, and skin, was making her most uncomfortable. Jump forward to about 3 weeks ago when Susan next went up to Dana Farber, and the decision was made to double the dosages for prednisone and tacrolimus. This has brought her back to higher levels than Dr. Soiffer would like, since the goal is to be gradually weaning her off this stuff, but it has also brought significant improvement in how she feels.

The current thinking is that as her body acclimates to all the changes in medication protocols she’s been through, she will be able to resume the path of medication reduction. The GVHD will, we hope, quiesce, even as the number and dosage levels of the drugs she takes are reduced.  Do keep in mind that it is “chronic” GVHD, so she will continue to be subject to flareups. However, these generally diminish in frequency and severity as time passes (no guarantees, of course), and that’s why the Third Anniversary is a big deal.

One more thing: Part of Susan’s travails with the state of her mouth have to do, not with GVHD per se, but with the growth of a lesion called verruciform xanthoma. This is an uncommon, but not unheard of, fellow traveler with GVHD and is usually benign, though it can become quite uncomfortable. Dr. Treister (remember him, the guy who handles oral issues for transplant patients?) has decided to excise the lesion (and, of course, biopsy it) in an upcoming visit that Susan is working on scheduling.

More to follow when there’s more to say.

P.S. In case you haven’t figured it out (I know I wouldn’t have), the perhaps obscure 3.1.09 in this blog entry’s heading -- “Happy Anniversary 3.1.09” – indicates that it is 3 years, 1 month and 9 days after the June 2, 2009 transplant procedure.

Sunday, January 15, 2012

TWO YEARS + 217 DAYS: Looking Better

Top Line: Susan's docs all feel she is making good progress

The most recent Dana Farber visit took place on Wednesday, January 11th. Susan saw Dr. Soiffer, her transplant case lead, as well as Drs. Marty and Dana for her MAC and eye condition respectively.

Let's keep it short and simple this time. All three felt Susan is coming along nicely. The main issue is when Susan can be weaned off of the MAC medications. Dr. Marty thinks this can happen in about 3 months. It is important because those medications have an uncertain interplay with Susan's other drug regimens (esp. the anti-rejection and GVHD meds), which themselves may now be candidates for reduction, but not until the MAC issues are removed from the equation so that her underlying, MAC-free status can be assessed.

It would certainly be nice to go from 30 to 3 pills a day. Those are made-up numbers, but you get the point: as her medication protocol can be reduced it is (1) indicative of real progress, and (2) makes daily living simpler and less difficult.

So, objectively, the measures that the doctors look at and their physical examination of Susan all indicate an improving condition, and subjectively, Susan is feeling somewhat better and less tired than she had been. Don't mistake this for normalcy yet, but we'll take it. Check back in a month for the next update.