Saturday, November 19, 2011

Two Years + 165 Days: On Balance -- So So

Top Line: Susan’s numbers are mostly decent, but the GVHD persists, and she’s anemic

This past Monday, Susan saw Dr. Soiffer at Dana Farber. For a change, he was the only MD on her dance card. Nice not to have had the usual hectic dashing about.

Based on the results of her lab work, Soiffer felt she was “doing good” overall. Of course, that’s his objective, numbers-driven view. Susan’s subjective, how-I-feel-driven view is less rosy (though by no means dismal), as the GVHD-inspired usual suspects (mouth, eyes, skin) continue to loiter in the vicinity. However, she’s certainly not too miserable to get out and about a bit and enjoy some of her customary pastimes (you don’t need to be told what those might be, do you?).

The one significant issue (aside from the GVHD) is that Susan is anemic, and thereon hangs a tale. Her hematocrit and hemoglobin numbers are flirting with the levels where a transfusion would be indicated. However, Dr. Soiffer believes the anemia can be ascribed in large measure to the medications she is taking for her MAC condition (mycobacterium avium complex – as you may remember from some blogs ago . . . the thing that masqueraded as tuberculosis). He’s therefore reluctant to go the transfusion route, preferring to wait and see if Susan can get off the MAC medications by, say, February (that will be Dr. Marty’s call), and if that resolves the problem.

In the meantime, the plan is to boost her blood with iron pills and diet. Chicken liver (which Susan loves in the form of chopped chicken liver, and it’s easy on her impaired eating apparatus) happens to be an especially good source of iron, and spinach is no slouch, so perhaps she can add these to the protein shakes and smoothies she’s consuming for easy-to-ingest nutrition -- think “chicken liver and spinach chocolate protein shake.” Sounds yummy.

On another front, she needs to go back to MEEI (Massuchusetts Eye and Ear Infirmary) the end of the month to provide more blood so they can make more of the special, genetically-tailored, private stock serum for her eyes. Her next regular DFCI visit is scheduled for December 19th.

Tuesday, October 18, 2011

Two Years + 134 Days: More Good than Bad

Top Line: MAC is improving, mouth is improving (a sign of diminishing GVHD?), but Susan's blood work shows she is anemic.

The most recent visit to Dana Farber was last Wednesday (Oct 12). Dr. Soiffer was not available but Nurse Amy, who is more than qualified, pinch hit for him. Susan also saw Dr. Marty (Mr. Infectious Disease) about her MAC and Dr. Triester about her mouth. Usually, this range of MDs would require dancing around schedules and locations with separate visits to each. In this case, however, the mountains came to Mohammed, with Marty and Triester visiting Dr. Soiffer's examination area where Susan would see Amy. Very convenient and a lot less wear and tear and stress. It's nice to be a VIP. As usual, though, first stop, de rigeur, was Phlebotomy, and then . . .

Regarding lungs: Susan had had a lung scan the week previous to her DFCI visit and the coughing she had been experiencing, now greatly diminished but not gone, turns out to be asthma related. That's a prior condition, and she is responding well to the measures to control it. As for the MAC, it is much improved and Dr. Marty is pleased with her progress. There's no need to adjust the medications, or to see her again until January (barring any unforeseen development).

Regarding mouth: Clinically, Susan's mouth has definitely improved, which Dr. Triester attributes to a likely improvement in her GVHD. However, the mouth doesn't feel better, and that continues to make eating, and therefore adequate nutrition, difficult. The biopsy she had of suspicious tissue on the inside lip/gumline on her previous visit showed no malignancy (good), but rather, an uncommon condition (I can't spell the name; it must be very uncommon) that is sometimes seen with GVHD. It doesn't require treatment at this point and will likely resolve with the diminishment of the GVHD.

Triester speculates that the continuing discomfort may be due in part to this unpronounceable condition, but also to the fact that Susan hasn't had a regular dental checkup/cleaning in two years - that had been put on hold due to the GVHD-inspired state of her mouth and specialized treatments for it - but the progress is such that she is now cleared for a regular checkup and cleaning by a regular dentist. The attention of conventional dentistry may be all she needs at this point to feel as good as she tests.

Regarding recovery: With Dr. Soiffer being unavailable, it fell to Nurse Amy to interpret the morning's blood work and provide the overall assessment. Susan's weight is down, which is not surprising given how uncomfortable it is for her to eat. This substandard intake may be responsible, at least in part, for the most significant reading from the blood work: anemia. Susan's hemoglobin and red count are at levels that would normally indicate a transfusion. However, the anemia may be GVHD driven and without more information, the most appropriate treatment is unclear. Susan is to have some specialized blood tests, which can be done in NYC and the results made available to the Boston team. Once they understand the cause, they will be able to proceed accordingly.

Regarding eyes: There was no need to see Dr. Dana at Massachusetts Eye and Ear. The serum continues to work. Susan's eyes are much improved although certainly not back to normal. Eyes will be added to her dance card for her next visit, scheduled for November 14th (as is the next posting to this blog, although we seem to be running some days late, of late).

Monday, September 19, 2011

Two Years + 105 Days: A Positive Turn

Top Line: Eyes improved, mouth improved (but there’s a but), skin no worse, MAC in check -- maybe GVHD is loosening its hold?

Susan and Bob made yet another pilgrimage last Wednesday to DFCI, the mecca of cancer cure, control, and care. First up (after the obligatory visit to Phlebotomy) was Dr. Villa, to address all things mouth. The good news here is that, based on comparative pictures, Susan’s mouth region looks better overall. This is important because it has been pain in this region that has made it very difficult for Susan to eat, and hence, to get adequate nutrition to promote recovery. The bad news is that there was one problem area – lesions on the gum – that needed exploring, via biopsy and stitches (big and continuing OUCH), to determine whether it is GVHD or something else. Results pending.

Next up was Dr. Soiffer, who pronounced himself satisfied with Susan’s overall condition. Her blood work results came back pretty much in acceptable range for all factors except bilirubin, which was somewhat elevated. Susan has had some swelling in the ankles, and Soiffer has put her on a water pill for this. He wants to see her again in 3 weeks.

Her final visit was with Dr. Dana at the Massachusetts Eye and Ear Infirmary for the usual battery of eye tests and an examination. Dr. Dana noticed, and Susan feels, improvement, such that he doesn’t need to see her again for 2 months, barring any unexpected developments. It seems that the tailored serum (ref. 8/15/11 post) is working – that, or her GVHD is improving, or both. You’ll know that her eyes are working because she actually drove to Hudson last week. Couldn’t have done that (at least not comfortably or safely) back when she couldn’t open her eyes.

She was not able to see Dr. Marty about her MAC condition, but here, she certainly continues to feel relief from the symptoms that led to her diagnosis. Some factors of the blood work done on Wednesday will enable Dr. Marty to determine whether the drug protocol he put her on needs any adjusting. Results there also still pending.

All in all, the improvements noted could mean that her GVHD is subsiding, but before proclaiming that a corner has been turned, let’s see what the story is after her next visit. Now, for a bit of trivia, to suggest how things might have improved: on the way back from Boston, Susan asked Bob to stop in Natick so she could check out a Container Store there – sounds like Susan of old. While in Natick, they happened upon a Jewish deli, where Susan ordered and consumed some kugel and soup (chicken, I presume), in spite of the sutures she’d received earlier in the day. That’s encouraging.

Monday, August 15, 2011

Two Years + 74 Days: Good News and Bad News

Top Line: The MAC is responding well to treatment, but GVHD continues, with skin and mouth about the same and eyes worse

The Siegels were in Boston this past Monday and Tuesday (Aug 8-9) for a round of tests and appointments. On Monday Susan saw Drs. Marty and Soiffer. The good news is that Dr. Marty pronounced himself pleased with Susan’s progress against the MAC attack. As you may remember from previous posts, MAC, or mycobacterium avium complex, an infectious pulmonary disease which in Susan initially masqueraded as tuberculosis, is a serious condition that requires a year-long treatment regimen. Getting the right selection and balance of the 3 (usually) antibiotics used in treatment is challenging to begin with, and generally requires some trial and error and periodic tuning thereafter. In Susan’s case the difficulty is compounded by her post-transplant status and GVHD, with the medications required for that. However, the protocol seems to be working at this point. Susan’s incessant cough is much improved. Even so, Dr. Marty is awaiting the results of certain blood tests to determine clinically whether more adjustment is advisable.

Dr. Soiffer continues to be concerned about the intransigence of the GVHD and the level of discomfort it is causing. Turns out, the MAC medications reduce the effectiveness of the main anti-rejection medication Susan is taking for GVHD, so Dr. Soiffer significantly increased its level. There’s been no noticeable improvement yet, but it’s not even quite a week. Let’s give it time. The good news is that Susan received a decent report card on her usual set of blood tests. It wasn’t “wellness” exactly, but there was nothing alarming.

Susan was also scheduled for an endoscopy late Monday afternoon, this to explore the reasons for difficulty she has swallowing. The procedure was scrubbed at the last moment because of concern about the pain involved, due to the GVHD-inspired condition of Susan’s throat. It may be rescheduled, but only with an anesthesiologist in attendance.

The main event Tuesday was a 5 hour stint at the Massachusetts Eye and Ear Infirmary involving a battery of tests preliminary to seeing Dr. Reza Dana, Director of Cornea and Refractive Surgery. Dr. Dana is the developer of a serum that can be effective in treating conditions like Susan’s. The treatment involves harvesting growth hormones from a patient’s blood as a basis for a serum, applied as eye drops, which can repair cornea damage and promote moister eyes. Susan’s eyes were so dry that she also received tear duct plugs to help keep what moisture she is producing in circulation around the eye. After Dr. Dana, she was sent to M.E.E.I.’s pharmacist for an explanation of how to manage the serum and what to expect. It’s kind of complicated. The serum, which requires frozen storage, should be ready sometime this week, but it can be several weeks after beginning the treatment before any relief is noticeable.

Finally, Susan saw Dr. Lehrman, who was covering for the vacationing Dr. Triester. The good news here is that the yeast infection opportunistically attacking Susan’s mouth (encouraged by the plethora of antibiotics she’s taking) is now much improved. However, the GVHD symptoms persist and she is uncomfortable. Eating continues to be difficult and often painful.

All in all, poor Susan is quite miserable, although some days are better than others. In particular, and ironically, her principal complaint at this point is her eyes, despite (or because of?) the plugs inserted when she was in Boston. She often can open them only with difficulty and pain, so she can’t read or do email and can watch television (or sort of watch) only sporadically and for short stints.

Susan does want you to know that she really appreciates the emails and cards she’s been receiving (as read to her by Bob or Charley) and apologizes that she can’t at this point respond back to you.

As usual, anticipate the next blog posting after her next visit to Dana Farber, scheduled for September 14th.

Tuesday, July 19, 2011

TWO YEARS + 48 DAYS: about MAC

Top Line: GVHD treatment on autopilot while the docs figure out the MAC attack

Susan an Bob were at Dana Farber yesterday to meet with Dr. Soiffer, her transplant doc and case manager, and with Dr. Francisco Marty, an oncological pulmonologist who is addressing the MAC (mycobacterium avium complex) issue.

The main purpose of the visit was to explain the additional medications Susan must now take and to get an early read on how her body is dealing with and responding to the new meds. At this point there are no issues, but it's early days and too soon to determine how effective this starter protocol will prove. Treating MAC, especially for a recovering transplant patient, is as much art as science, and will require continuous monitoring, primarily via blood work, with the possibility of minor to major adjustments in Susan's drug regimen. Once the right formula is in place (and it could even be this starter protocol), Susan should experience a notable improvement in her cough within 1-2 months. However, the medications will likely need to be continued for a year or more.

Susan is scheduled for a followup assessment in three weeks. At that visit she will also see an opthamologist at Mass General who will administer a serum that may help with Susan's eye problems. Yes, we said that tuning the GVHD treatments was being put on hold, but they must nonetheless be continued in a stable fashion (so as not to interfere with the interpretation and adjustment of the MAC treatments). This particular serum, however, has been determined not to have any potential conflicts with the current GVHD or MAC regimens, so it's worth trying now, given how uncomfortable Susan's eyes are.

Return to this blog in 3 weeks for an update on Susan's next DFCI visit.

Monday, July 11, 2011


Top Line: Susan's GVHD remains unchanged but she's now developed MAC, which must be dealt with first

Susan was to have visited Dana Farber (DFCI) today. However, her appointment was moved up to last Friday. Here's why: In addition to her GVHD symptoms, Susan has had a persistent cough for several months now. Her NY internist listened to her lungs and had her get a chest X-Ray, all of which proved negative, but the cough persisted.

She was referred to a pulmonologist who ordered a CT scan, which is more sensitive than an X-Ray. This revealed that she was not being hypochondriacal, but indeed had a lung problem that looked like tuberculosis. Samples were taken for cultures and Susan was put into quarantine, pending results. House arrest and no visitors. This transpired over the 4th of July weekend, of course, which introduced delays in diagnosis and treatment. Essential personnel (Bob and Charley, because they live there), were allowed in, but distances had to be observed (the parties confined to opposite ends of the living space), masks had to be worn, and there was frequent washing of hands, if not gnashing of teeth. The initial test came back positive for TB, but it was not a definitive diagnosis, as other mycobacterial lung conditions could look the same. For certainty, we needed to await the state's TB lab test results, which took a week or so.

While this was happening in NYC, Susan and Bob were in touch with Dr. Soiffer, who doubted it could be TB and mobilized the appropriate Boston docs. He had her come up this past Friday, the day her NY State lab results were due to be available, to meet with the team he'd assembled. Bottom line: it is not TB but MAC (Mycobacterium Avium Complex), also a serious condition requiring a year-long medication regimen, but, unlike TB, it is not contagious.

The three drugs Susan will have to take are being phased in over the next week or so, and the protocol may change based on how well she can tolerate these particular meds, their potential interactions with her other meds, and how effective they prove to be. So, this is far from a walk in the park, but her case is considered to be a mild one, and in and of itself, the MAC isn't making her feel too bad, except for the near constant coughing.

Her GVHD problems persist, manifesting in the mouth, eyes, and skin, but trying new, and potentially more effective treatment for this complex of issues is on hold while her doctors establish and tune the treatment for her MAC. She will be going back up to Boston a week from today (July 18) and I'll report further then.

Sunday, June 19, 2011


Top Line: the good news - no lymphoma/leukemia detected; the bad news - Graft vs. Host continues unabated. As for the details, it's complicated

On Monday, June 6th, Susan and Bob travelled to Boston for her most recent examination by Dr. Soiffer. Breaking from tradition, where this blog has provided a relatively detailed account of findings and evaluations, today (almost two weeks after the fact - apologies), you'll see only a high level summary. One reason for this is that the details are complicated and explaining them (if I understood them) would be quite laborious, both to write and to read. Another reason is that what most of you reading this blog (if any of you still are) probably want to know is simply: how is Susan doing?

Here's how: Tests reveal no trace of the cancer. Nor is there any indication that the GVHD has attacked internal organs. That's good. That said, however (and without going over every test result), her "numbers," while not at alarming levels, indicate that Susan is not doing as well statistically as she has over the past year or so. This is doubtless a reflection of the Graft vs. Host problem, which in turn may be a consequence of various medication levels having been reduced over the past half year or so. Dr. Soiffer is adjusting the meds, so let's give that a bit of time to take effect, and we'll see. Speaking of seeing, he also wants to see her in another two weeks, which is increasing the visit frequency back down to one month. At least it's better than every week. Remember those days?

And just as a reminder, and without going into the details, Susan's GVHD manifests itself in unpleasant, uncomfortable, and unsightly ways in her mouth/lips, eyes, and skin. Continuing the topical treatments for these affected areas, along with an increase in the systemically targeted medications, will (we hope) lead to improvement and significantly less discomfort. As for prognosis, nobody can say how long this problem may continue. Frustrating, but that's how it is.

Finally, and very importantly, Susan has been receiving emails and other contacts from old friends and acquaintances with whom she has lost touch over the years but who somehow became aware of her condition. Score another one for social networking media. She wants you all to know that she has been delighted and heartened by receiving word from you, so keep those cards and letters coming. However, due to her fatigue (one blood result showed anemia) and her difficulty focusing her eyes for very long on a computer screen or letter, she has been slow to respond back. She does know that you know and care, she does care that you do, and she's doing her best to get back to everybody, but be patient if she doesn't get back to you promptly.

Next communique should be in a little over two weeks.

Wednesday, April 13, 2011

ONE YEAR + 314 DAYS: GVHD round 4 - Improving

Top Line: Susan is “doing well” overall, according to Dr. Soiffer, but it’s complicated.

Susan and Bob’s most recent Dana Farber visit was spread over two days (4/11 & 12). Monday began, as usual with a visit to the vampires, followed by an examination by Dr. Soiffer. Here are the salient points:
  • clinically Susan is doing well even though she isn’t feeling all that well.
  • Blood work results were good; slight elevation in white count but nothing alarming.
  • Ascites has definitely diminished.
  • With respect to the GVHD symptoms, mouth looks better, eyes about the same, skin continues to be very rashy, but since it’s not too itchy, leave it alone rather than add additional steroidal medications.
  • Positive adjustments in medications: prednisone reduced by 33%, pills for ascites reduced from 3 to 2.
  • Soiffer recommends, but does not insist upon, trying flaxseed oil for the eyes; Susan is considering.
  • At next visit, which will be around the 2 year anniversary, Susan will have a flow cytometry performed. This is a technique for counting and examining microscopic particles (e.g., cells, chromosomes) in the blood and should reveal the status of the “markers” that define Susan’s disease. In other words, it should provide a quantifiable report card on Susan’s condition; however, if the results are not definitive, it may be necessary for Susan to undergo a bone marrow biopsy, which, to understate the case, is not pleasant.
Next, Susan was seen by Dr. Jacobs, her oncological opthamologist.
  • Clinically, her eyes seemed about the same as last visit two months ago, although Susan feels they hurt a bit more. Dr. Jacobs did comment that Susan’s case was far from the worst she has seen and that the chronic GVHD which Susan is currently experiencing at a relatively mild and non-worsening level (as manifested in eyes, mouth, and skin) is actually an encouraging sign.
  • Some background: the discomfort is due in large measure to dry eyes, to combat which opthamologists often insert plugs to block the tear ducts, thus keeping the eyes moist. There are four tear ducts altogether – upper and lower for each eye.
  • Dr. Seedor, a NYC opthamologist working with Dr. Jacobs, inserted one plug (of a possible four) about two weeks ago as a “proof of concept.”
  • When Dr. Jacobs examined Susan, she determined that the plug had come out (as can sometimes happen).
  • Dr. Jacobs decided to insert 3-day dissolving plugs in all four tear ducts to judge whether this treatment was providing relief, and how much (to be determined by how Susan feels with the plugs vs. after the plugs have dissolved in three days). If the plugs turn out to be effective, then Jacobs and Seedor will confer about Seedor putting in four permanent plugs.
  • Dr. Jacobs also gave Susan a sample of Lotemax, a prescription medication for dry eyes. Susan’s eyes are feeling better today, but it’s impossible to determine how much of the improvement is due to the Lotemax vs. the temporary plugs. After the plugs dissolve (which should be in another day or two) it will be possible to evaluate the effect of the Lotemax, as well as to determine whether to go ahead with permanent tear duct plugs.
On Tuesday Susan saw Dr. Treister for her mouth:
  • Dr. Treister definitely felt that the condition of Susan’s mouth had improved since the last visit two months ago.
  • He is having her continue with the mouth rinse she started as part of the clinical trial (see blog entries for 11/30/10 and 1/19/11), but at a reduced frequency, which is good news.
  • However, there is no apparent improvement in the condition of the lips. Susan has found that OTC lip balms provide as much topical relief as does the medication Dr. Treister prescribed. He is switching her to a new, steroid-based medication which she is to use 2X/day while she may continue to employ OTC balms as desired.

The net: Susan’s “vital signs” with respect to the disease are good and her GVHD, which is at worst a moderate case, is stable to improving. We’ll take it. The next DFCI visit is scheduled for June 6th, just after the two year anniversary of the transplant procedure. You‘ll be able to read all about it here in the blog shortly thereafter.

Wednesday, February 16, 2011

ONE YEAR + 260 DAYS: GVHD round three

We interrupt this blog to bring you a just-breaking request from its subject, Susan.

In addition to friends and family with whom she is otherwise in touch, Susan has, with surprise and pleasure, gratefully received comments posted to the blog from people lost in her past and even a few total strangers. She would like to acknowledge this support but the blog does not require or capture your contact information. If and when you post comments, please feel free to include a contact email address or to reach out to Susan directly at Thank you.

We now return to our irregularly scheduled blog posting.

Top Line: chronic GVHD persists (which is why they call it "chronic") as manifested in eyes, mouth, and skin, but it's not worsening.

While Monday offered Valentine's Day pleasures for most of us, for Susan and Bob it was another Boston grind: Dr. Soiffer, of course (preceded by the de rigeur pitstop at Phlebotomy so Soiffer would have numbers to cluck over). Also Dr. Triester for her mouth and Dr. Jacobs for her eyes. Lots of running around. At least the day was spiced up by the fact that the oncology people are now in their spanking new state-of-the-art digs, so there was the novelty of unfamiliar, and jazzy, surroundings. By the way, keep in mind that Boston's not all of it -- she regularly sees an internist and dermatologist in NYC whose observations and treatments need to be melded with those of the Boston docs.

Add it all up, and here's what's going on, in Susan's own words:
"Count: 22 pills (although one went down in dosage this visit) PLUS various drops, creams gels for mouth and eyes. Fun regimen."

But let's keep the long view in mind. Progress is being made, as a 9/11/10 photo of this glamorous woman suggests

Now, for the rundown of Monday's visit . . .

1. the SOIFFER segment: Susan's blood work was good, which is good, so they talked about the fact that chronic GVHD, even this far out, is not that unusual. It's impossible to predict how long it will last, but it could be many months, or it could be less (it's been, what?, three or four so far). It can't be "cured." It will run whatever its course turns out to be. However, it can be managed symptomatically (hence the doctors for eyes, mouth, and skin), with several of the indicated treatments being steroid based.

That introduces it's own set of problems, as steroids are not benign medications. It's a fine balancing act to provide enough steroid-based treatments, coordinated across several battlefronts (eyes, mouth, skin) to promote comfort and healing while limiting the complications which steroids entail. In fact, each specialist Susan is seeing would like to give her even more steroids but they can't, because in the aggregate she's at the fine edge between more harm than good. One of the side effects of these steroids is difficulty sleeping. File that thought.

The new news is that (1) Susan has an upper respiratory infection, which her internist is treating with antibiotics, but she feels kind of rotten as a result. And (2) Susan has not been sleeping. She either can't sleep so she stays up until 3, 4, or 5 in the morning, or she does manage to fall asleep earlier, say 11 PM or midnight, but then wakes up at 2 and can't get back to sleep. That makes her feel kind of rotten, too. Add in the GVHD, and you get the picture. Of course, adequate sleep is important to her recovery from GVHD. Dr. Soiffer prescribed a new sleep medication. We'll see how effective it is.

2. the TRIESTER segment: The condition of Susan's mouth is about the same to slightly improved, but Dr. Triester observed what might be a yeast infection so he has added an anti-fungal medication to the rinses and creams she is already using for her mouth and lips.

3. the JACOBS segment: there appears to be some modest improvement in Susan's eyes.

On the dermatological front, while she is still rashy, she is not itching as much as she once was. So, she may be a little less uncomfortable with respect to GVHD symptoms, but we don't know, because the upper respiratory infection and sleep deprivation are masking how she would otherwise feel. As the antibiotics and the new sleeping pills do their job, We think and hope that, with respect to GVHD, she'll feel somewhat better.

Dr. Soiffer's scheduled her next visit for April 11th, almost two months out. I take that as a good sign. Tune in then for the next update,

Wednesday, January 19, 2011

ONE YEAR + 232 DAYS: GVHD round two, continued

Top Line: Susan’s been experiencing some GVHD for a few months now, but it’s gradually improving.

Susan and Bob did the Boston thing two weeks ago (Jan 5), preceded by a dermatology visit in NYC on Jan 4 as part of the same cluster of care. (Apologies for this belated report.)

Here’s the skinny:
Susan is continuing to experience a return of Graft vs. Host, as described in the November 30 post. You may remember that this is a common occurrence in transplant patients. In its severe form, which tends to happen earlier in the transplant experience, it can be very dangerous. When it occurs this long after the procedure it is less likely to be life threatening, but it can be quite uncomfortable. However, it is also an indication that the transplant is working, which is good.

Without being specific, because the details get icky, Susan’s GVH is manifesting in her mouth and eyes as well as in pretty extensive rashing, particularly around the torso. Rest assured, Susan’s condition is being followed assiduously by her doctors, Dr. Latkowski for her skin, Dr. Jacobs for her eyes, Dr. Triester for her mouth, and, of course, her primary transplant oncologist, Dr. Soiffer. The good news is that the various symptoms seem to have peaked and are finally starting to abate. The study being conducted by Dr. Triester, the one where Susan was given one of two medications currently under review, has concluded and she is now being given both medications, along with topical salves for her lips. Otherwise, it’s various steroidal products along with a number of lotions and ointments for eyes and body rash.

As those of you who are in closer touch with Susan will know, the GVHD has slowed her down, as she oscillates between uncomfortable and very uncomfortable, but it has not stopped her. She’s not always up to it, but she does get out some to do the usual things she likes to do (i.e., shop), although she does need to be very careful with what she eats – Bob’s been enlisted as her taster – as anything at all spicy and even certain unspecified ingredients that you or I might not notice can cause real distress. But she’s coping . . . and, I think, gradually improving.

I promise to blog more promptly after her next DFCI visit.