Top Line: a Touch of GVH, manifesting as rash, but not serious
It wasn't bound to happen, but it's not surprising that it has. And don't worry. We've got your back. Also your eyes, mouth, and front. That's the official assessment from the good Dr. Soiffer, per Susan's visit to DFCI yesterday. In short, she has developed a mild to moderate case of GVH (graft vs. host), which has manifested as a body rash, mouth sores, and inflamed and glassy eyes . In case you don't remember what GVHD is, you can scroll down to the bottom of the blog where you'll find a description of the disease, the transplant procedure, and the risk factors in doing the transplant.
The condition isn't fun, but it isn't debilitating. Maria and I visited with Susan and Bob this past Saturday in Spencertown, and she was up to hosting a small family gathering (Leslie, Rudy, and John Henri Richardson, Nate and Callie, Charley Siegel, and us). With her body covered, as it was, you wouldn't have known.
That said, the condition has to be treated and watched. So, here's the summary from the DFCI visit: blood work results were basically good, except for a slight elevation in the liver numbers. Dr. Soiffer had Susan see an oral oncologist on staff, who prescribed a lip cream and is deciding between one of two different mouth rinses that are currently being evaluated in a clinical study. Susan will need to be enrolled in the study in order to receive the treatment, and that registration (which may require another trip to Boston next week) is currently in process. The good news about this study is that it does not compare the treatment to a placebo but rather pits the two medications against each other, head to head. So, Susan will be getting something, whatever it is, that is expected to work.
For her eyes, Susan still needs to see an oncological opthamologist (which will happen at DFCI if she returns next week, otherwise in NYC), and for her body rash, her own dermatologist (who did an oncology rotation at DFCI). So, there are still open issues, but a plan is in place to address them. In the meantime, please realize that while her condition needs to be treated and followed, it is not considered life threatening. She is uncomfortable but not miserable. It is not the "yechy-ness" of old.
Susan will need to return to DFCI in about a month as part of the study to assess the efficacy of whichever mouth rinse is prescribed for her. Hopefully by then the rash, and the GVH, will have subsided, if not disappeared entirely. You can read about it here when it happens.
Tuesday, November 30, 2010
Tuesday, October 5, 2010
ONE YEAR + 125 DAYS: Looking Good
Top Line: Progressing Nicely
Susan, accompanied by her ever faithful chauffeur and spouse, Bob, was in Boston yesterday to see Dr. Rob Soiffer, her ever faithful oncological transplant specialist. The tests run indicated no issues worth mentioning, Susan's outward appearance and her self-assessed condition were good, and Dr. S. pronounced himself satisfied. He swapped out one medication for a milder variant and indicated that he planned, over time, to wean Susan off most of the drugs she currently takes. A good marker for her progress is that Dr. Soiffer scheduled her next appointment for two months out. Remember back when it was every week?
As for this blog, is anyone still out there? At this point, the blog's audience, if any remnant of it remains, realizes that Susan has been doing well these last several months. Accordingly, blog entries are becoming briefer and more widely spaced. Soon they may become so brief and so widely spaced in time that they will, for all practical purposes, cease to exist, and that will be a good thing. Nevertheless, Susan's ever faithful blogster will remain at his post blogging until there is absolutely nothing left to blog because Susan has been pronounced officially "cured." And if these posts have already become, or will so become soon, something akin to the problematic sound or lack thereof of the proverbial tree falling in the forest with no one to hear (or, in this case, see), so be it. . . .
. . . all of which is to say, in typically long-winded fashion: "back in two months with the next update, whether you tune in to read it or not."
Tuesday, July 27, 2010
ONE YEAR + 55 DAYS: Coming Along
Short and Sweet: Susan had a good visit with Dr. Soiffer yesterday. There are a few test results that were not available on a same day basis, but what lab work did come back was decent. From a quantitative perspective, Susan is doing well at this point, and those of you who have seen or talked to her recently know that in general she's been feeling pretty good.
As you may remember, the further out from the transplant Susan gets, the less likely it is that she will have complications or setbacks. So what's happening (or not happening) now is goodness. However, while increasingly less likely, problems can still arise, so the appropriate position is "guardedly optimistic."
As you may remember, the further out from the transplant Susan gets, the less likely it is that she will have complications or setbacks. So what's happening (or not happening) now is goodness. However, while increasingly less likely, problems can still arise, so the appropriate position is "guardedly optimistic."
Wednesday, June 2, 2010
DAY +365: Happy Anniversary!
Top Line: a good report at the 1 year mark
Hard to believe, but it was a year ago today that Susan received her transplant. For those fond of strolling down Memory Lane, I have dug into the archives to append the blog from that day (see below). As for today, here's how things stand:
Susan was to have gone to Boston yesterday for a liver biopsy, among other things, but she "called in sick" with a sore throat, so those procedures were postponed. By last night she was feeling better and today Susan and Bob drove up for her scheduled appointment with Dr. Soiffer. Her consultation came after the usual round of vital-signs-taking and blood tests, all the results of which are not yet available, but based upon what Soiffer did see, he pronounced her "doing very well at this point," especially given her rocky history over the past year.
To be more specific: those test results that were available by this afternoon were all good, including those that indicate how the liver is doing (e.g., bilirubin). The liver, as a potential locus for GVHD, has been, you'll remember, an ongoing concern, with a secondary manifestation of severe ascites. One of the rationales for the liver biopsy scheduled for yesterday was continuing ascites. I'm delighted to report that the ascites is now so diminished that Soiffer doesn't see a need for the liver biopsy.
The most interesting aspect of the day was the spate of re-vaccinations which Susan needed to have administered. A year ago, when she lost her marrow, she lost her vaccine-provided immunities. Today, like an infant, she was at the point where she was ready for her standard set of childhood vaccinations. Happy Anniversary and Happy Birthday, Susan!
As those of you who have had recent contact with Susan outside of this blog will know, after what seemed an interminable period of halting and uncertain progress, with two fair-to-good days followed by a really Y**** day, Susan has strung together an impressive number of good days. While she appears painfully thin, or fashionably slender, she has actually gained back 4 pounds recently and is now eating with a pretty good appetite. Woohoo! It's a far cry from cheering when she managed to down half of a grilled cheese sandwich.
The one year mark is often thought of as a watershed (informally, of course, as there's no clinical, or magical, boundary that separates day 364 from 366). But transplant patients who make it this far are seen as moving into clearer, less dangerous waters. No guarantees (when ever are there) but the progress is indisputable.
We'll wait, of course, for the remaining test results, but absent surprises, Susan's free to cruise along unmonitored until her next DFCI visit on July 9th. Until then . . .
Tuesday, June 2, 2009 
The donor stem cell's, now Susan's (top)
Susan and Nurse Karen doing nothing (left)
The deed is done. The infusion began at approximately 10:15 today and was finished about an hour and a half later - turned out to be briefer than expected. And yes, for the major inflection point in Susan's disease, it was an underwhelming event. Nurse Karen simply hooked up the bag with the stem cells (the red bag in the picture above) and that was it. No drumrolls, no fireworks display, just a steady drip like any other coming from a bag through an IV line. If Susan did not know it was happening, she wouldn't have been able to tell.
Susan's team of 5 doctors came in at one point during the procedure, nodded sagely, clucked a bit, squabbled mildly and made up (just to show they were on the job), and then left without doing anything or offering any useful information or advice. Dr. Soifer (Susan's lead transplant specialist) stopped in a bit later to say hello and said everything was looking good.
Susan has no appetite but Nurse Karen says that's par for the course. I'll continue to nag her about her applesauce and fluids. Otherwise, she definitely looks better than she did yesterday and feels somewhat better - if she were eating and drinking, she'd feel better still, but that's a fine balancing act between nutrition and nausea.
Susan's room is a little like Grand Central - people are constantly popping in and out. In just the past hour we've had Nurse Karen bearing ice chips, Carol the Patient Care Coordinator with documents to sign, and Tammy the Social Worker for no discernible reason, but she was very sweet and she did leave her card.
And finally, Susan says "Hi. I'm glad it's over, but the real part is just starting." Couldn't coax more of a statement from her for the record at this point, but she says she may have more to say later, so stay tuned.
Hard to believe, but it was a year ago today that Susan received her transplant. For those fond of strolling down Memory Lane, I have dug into the archives to append the blog from that day (see below). As for today, here's how things stand:
Susan was to have gone to Boston yesterday for a liver biopsy, among other things, but she "called in sick" with a sore throat, so those procedures were postponed. By last night she was feeling better and today Susan and Bob drove up for her scheduled appointment with Dr. Soiffer. Her consultation came after the usual round of vital-signs-taking and blood tests, all the results of which are not yet available, but based upon what Soiffer did see, he pronounced her "doing very well at this point," especially given her rocky history over the past year.
To be more specific: those test results that were available by this afternoon were all good, including those that indicate how the liver is doing (e.g., bilirubin). The liver, as a potential locus for GVHD, has been, you'll remember, an ongoing concern, with a secondary manifestation of severe ascites. One of the rationales for the liver biopsy scheduled for yesterday was continuing ascites. I'm delighted to report that the ascites is now so diminished that Soiffer doesn't see a need for the liver biopsy.
The most interesting aspect of the day was the spate of re-vaccinations which Susan needed to have administered. A year ago, when she lost her marrow, she lost her vaccine-provided immunities. Today, like an infant, she was at the point where she was ready for her standard set of childhood vaccinations. Happy Anniversary and Happy Birthday, Susan!
As those of you who have had recent contact with Susan outside of this blog will know, after what seemed an interminable period of halting and uncertain progress, with two fair-to-good days followed by a really Y**** day, Susan has strung together an impressive number of good days. While she appears painfully thin, or fashionably slender, she has actually gained back 4 pounds recently and is now eating with a pretty good appetite. Woohoo! It's a far cry from cheering when she managed to down half of a grilled cheese sandwich.
The one year mark is often thought of as a watershed (informally, of course, as there's no clinical, or magical, boundary that separates day 364 from 366). But transplant patients who make it this far are seen as moving into clearer, less dangerous waters. No guarantees (when ever are there) but the progress is indisputable.
We'll wait, of course, for the remaining test results, but absent surprises, Susan's free to cruise along unmonitored until her next DFCI visit on July 9th. Until then . . .
Tuesday, June 2, 2009
DAY ZERO: Out with the Bad Cells, In with the Good
The donor stem cell's, now Susan's (top)
Susan and Nurse Karen doing nothing (left)
The deed is done. The infusion began at approximately 10:15 today and was finished about an hour and a half later - turned out to be briefer than expected. And yes, for the major inflection point in Susan's disease, it was an underwhelming event. Nurse Karen simply hooked up the bag with the stem cells (the red bag in the picture above) and that was it. No drumrolls, no fireworks display, just a steady drip like any other coming from a bag through an IV line. If Susan did not know it was happening, she wouldn't have been able to tell.
Susan's team of 5 doctors came in at one point during the procedure, nodded sagely, clucked a bit, squabbled mildly and made up (just to show they were on the job), and then left without doing anything or offering any useful information or advice. Dr. Soifer (Susan's lead transplant specialist) stopped in a bit later to say hello and said everything was looking good.
Susan has no appetite but Nurse Karen says that's par for the course. I'll continue to nag her about her applesauce and fluids. Otherwise, she definitely looks better than she did yesterday and feels somewhat better - if she were eating and drinking, she'd feel better still, but that's a fine balancing act between nutrition and nausea.
Susan's room is a little like Grand Central - people are constantly popping in and out. In just the past hour we've had Nurse Karen bearing ice chips, Carol the Patient Care Coordinator with documents to sign, and Tammy the Social Worker for no discernible reason, but she was very sweet and she did leave her card.
And finally, Susan says "Hi. I'm glad it's over, but the real part is just starting." Couldn't coax more of a statement from her for the record at this point, but she says she may have more to say later, so stay tuned.
Wednesday, April 14, 2010
DAY +314: Still Working to Understand the Issue
Top Line: Internal bleeding (now resolved) has delayed plan
Susan and Bob went up to Dana Farber Monday, where they expected to meet with the gastroenterologist to get to the bottom of the ascites/liver issue. Susan was looking and feeling a bit peaked, though, and the blood work (which is always done first upon arrival) revealed a significantly depressed hematocrit, a sign of internal bleeding. Dealing with this put all other plans on hold.
An endoscopy was performed and it revealed bleeding ulcers, both esophogeal and gastric. Susan was hospitalized, put on Nexium intravenously, and given 4 units of blood. Today she was feeling much better -- nothing like a jolt of fresh blood to perk a body up -- and actually ate a good breakfast.
This afternoon they performed a needle biopsy to get a sample of the ascites fluid. The doctors are going to consider the results of the various samples they have taken and bring that information into an examination and consult on April 26th with the gastroenterologist being tasked to get to the bottom of Susan's condition. Paracentesis to drain the ascites fluid is also a likely treatment item when she returns on the 26th. As I write, she should be in the process of being released to return home to NYC, but with a number of adjusted and new medications.
Tune back in late on April 26th, when I expect to be blogging the results of Susan's next DFCI visit.
Susan and Bob went up to Dana Farber Monday, where they expected to meet with the gastroenterologist to get to the bottom of the ascites/liver issue. Susan was looking and feeling a bit peaked, though, and the blood work (which is always done first upon arrival) revealed a significantly depressed hematocrit, a sign of internal bleeding. Dealing with this put all other plans on hold.
An endoscopy was performed and it revealed bleeding ulcers, both esophogeal and gastric. Susan was hospitalized, put on Nexium intravenously, and given 4 units of blood. Today she was feeling much better -- nothing like a jolt of fresh blood to perk a body up -- and actually ate a good breakfast.
This afternoon they performed a needle biopsy to get a sample of the ascites fluid. The doctors are going to consider the results of the various samples they have taken and bring that information into an examination and consult on April 26th with the gastroenterologist being tasked to get to the bottom of Susan's condition. Paracentesis to drain the ascites fluid is also a likely treatment item when she returns on the 26th. As I write, she should be in the process of being released to return home to NYC, but with a number of adjusted and new medications.
Tune back in late on April 26th, when I expect to be blogging the results of Susan's next DFCI visit.
Tuesday, April 6, 2010
DAY +306: Working to Understand the Issue
Top Line: No alarming outcomes but the persistant ascites an issue
The good news is that there was no bad news resulting from Susan's visit to Dr. Soiffer on Monday. However, she continues to be something of a medical mystery. Ascites, the buildup and retention of fluid in the abdomen, is usually a byproduct of some kind of liver issue. Susan's ascites continues and seems to be associated with her maddening pattern of two or three good days followed by a bad day (remember "yech"?). So, what's the liver issue? What's going on gastrointestinally speaking? What's root cause? Nobody knows.
As Soiffer explained it, all the various tests she's had over the past several months -- endoscopy, MRI, liver ultrasound, et al. and ad infinitum -- seem to point in different, mutually exclusive directions. It's a puzzlement. He has enlisted his most preferred gastroenterologist, someone who was desired but not available in an earlier go-round on this matter, and this guy, we hope, will be able to figure it out. He has ordered an echocardiogram, to be done this week in NYC, and then a return visit to DFCI next Monday when Susan will undergo another paracentesis to remove excess fluid that's accumulated due to the ascites. Based on outcomes, combined with all previous data points, he will, we hope, have a better understanding of Susan's condition than has been hitherto achieved and will prescribe the appropriate course of action.
Meanwhile, let's keep this all in perspective. It's now more than 300 days since the procedure. The further out she gets, the better the prognosis for a lasting cure. While there's been some GVHD, which is the greatest threat to a transplant patient, it has not been particularly virulent. Over time, if the conflict hasn't escalated, the foreign and native armies just get worn out from fighting and decide to get along, intermingle, intermarry, until, ultimately, they can't tell themselves apart from each other.
Susan is experiencing more good days, days where she feels almost like a civilian, than bad. She's getting things done, getting out of the house (except on bad days). Let's see what this new doctor comes up with. I'll report back, via this blog, after her visit to him next week.
The good news is that there was no bad news resulting from Susan's visit to Dr. Soiffer on Monday. However, she continues to be something of a medical mystery. Ascites, the buildup and retention of fluid in the abdomen, is usually a byproduct of some kind of liver issue. Susan's ascites continues and seems to be associated with her maddening pattern of two or three good days followed by a bad day (remember "yech"?). So, what's the liver issue? What's going on gastrointestinally speaking? What's root cause? Nobody knows.
As Soiffer explained it, all the various tests she's had over the past several months -- endoscopy, MRI, liver ultrasound, et al. and ad infinitum -- seem to point in different, mutually exclusive directions. It's a puzzlement. He has enlisted his most preferred gastroenterologist, someone who was desired but not available in an earlier go-round on this matter, and this guy, we hope, will be able to figure it out. He has ordered an echocardiogram, to be done this week in NYC, and then a return visit to DFCI next Monday when Susan will undergo another paracentesis to remove excess fluid that's accumulated due to the ascites. Based on outcomes, combined with all previous data points, he will, we hope, have a better understanding of Susan's condition than has been hitherto achieved and will prescribe the appropriate course of action.
Meanwhile, let's keep this all in perspective. It's now more than 300 days since the procedure. The further out she gets, the better the prognosis for a lasting cure. While there's been some GVHD, which is the greatest threat to a transplant patient, it has not been particularly virulent. Over time, if the conflict hasn't escalated, the foreign and native armies just get worn out from fighting and decide to get along, intermingle, intermarry, until, ultimately, they can't tell themselves apart from each other.
Susan is experiencing more good days, days where she feels almost like a civilian, than bad. She's getting things done, getting out of the house (except on bad days). Let's see what this new doctor comes up with. I'll report back, via this blog, after her visit to him next week.
Tuesday, March 9, 2010
DAY +278: inconclusive results
Top Line: Susan's not doing too badly, but the docs aren't sure what's going on
Yesterday Susan was up in Boston for an endoscopy and a consult with Dr. Soiffer, the oncologist who's overseeing her transplant and recovery.
The endoscopy revealed no signs of GVHD (graft vs. host disease) in her stomach or above; however, it did show something going on which they are uncertain about at this point.
The liver biopsy which Susan had a bit ago indicates GVHD affecting the liver, but it isn't a severe, debilitating case. The treatment for this, upon which she is about to embark, is low dosage steriods.
Susan continues with her pattern of a couple of good days followed by a bad day. Why she should experience this fairly regular cycle no one knows. Perhaps it's the GVHD, in which case the steroids may resolve the matter, or perhaps it's due to whatever it is that was noticed in the endoscopy, or perhaps it's something else entirely. Let's hope some clarity emerges at her next Soiffer visit, which will be in about a month.
Yesterday Susan was up in Boston for an endoscopy and a consult with Dr. Soiffer, the oncologist who's overseeing her transplant and recovery.
The endoscopy revealed no signs of GVHD (graft vs. host disease) in her stomach or above; however, it did show something going on which they are uncertain about at this point.
The liver biopsy which Susan had a bit ago indicates GVHD affecting the liver, but it isn't a severe, debilitating case. The treatment for this, upon which she is about to embark, is low dosage steriods.
Susan continues with her pattern of a couple of good days followed by a bad day. Why she should experience this fairly regular cycle no one knows. Perhaps it's the GVHD, in which case the steroids may resolve the matter, or perhaps it's due to whatever it is that was noticed in the endoscopy, or perhaps it's something else entirely. Let's hope some clarity emerges at her next Soiffer visit, which will be in about a month.
Thursday, February 4, 2010
DAY +245: Waiting for Results
Top Line: Blood chemistry OK, liver biopsy results in 7-10 days
Susan, ferried by the indefatigable Bob, spent a couple of days in Boston this week. On Monday she had her usual round of blood work and saw Dr. Soiffer. For the most part, her numbers were good, although a couple of areas were suspect and bear watching. No need for details unless and until there's something specifically and clearly amiss.
Tuesday was the liver biopsy, accomplished under local anesthetic (and a tranquilizer). The process was an all day affair, start to finish, given necessary post-procedure observation time to be sure there was no bleeding. It went smoothly, proving to be more tedious and annoying than painful, but we'll need to wait 7-10 days for results. It was well into the evening before the Siegels left Boston. After two long and stress-filled days, Susan is, understandably, not at the top of her game. A few days rest and recuperation should see her feeling reasonably decent again.
I'll post again when there's some definitive news from the biopsy, and after that, to provide the outcomes from her next Dana Farber checkup, scheduled for March 8th.
Thursday, January 7, 2010
DAY +217: Ascites Resolved; Liver Resolution in Process
Top Line: abdominal fluid buildup drained; more info/time needed to resolve liver issues
Yesterday Susan had about a gallon of fluid, over 9 pounds, removed from her abdominal area (it was nearly 4 liters, in medical speak, but we're Americans, so we don't do metric). It's a quick way to lose weight but don't try it at home. This has alleviated the extreme discomfort of the ascites, although it has introduced a new, but temporary discomfort of its own as the various organs and innards resettle into their reconfigured space. That will pass, presumably leaving Susan feeling much more comfortable than she has for a while now.
The MRI revealed a partial thrombosis (i.e., clot) in the portal vein into the liver, as well as scarring on the liver. The doctors don't know at this point what caused the scarring. More information needs to be gathered, which will be done via
Susan's overall blood results from Monday were in or close to normal range, including bilirubin for liver function, so there's no medical emergency involved. The ascites fluid analysis is already in the works. Susan will probably have the chem 20 done at NYU and possibly the liver biopsy as well, but her Boston team is OK with her waiting on these until her next DFCI visit in early February (don't know the exact date yet). By the way, the skin problems reported on previously in this blog are also most likely attributable to the liver problem, rather than GVHD as once speculated, so we'll hope for improvement on that score as well once the liver issue has been successfully addressed.
When I get a firm date for the next DFCI visit and/or other significant information, I'll post it, but as I can't anticipate when that will be, you might want to check on the blog periodically. Of course, the next full report will be after the February visit.
Yesterday Susan had about a gallon of fluid, over 9 pounds, removed from her abdominal area (it was nearly 4 liters, in medical speak, but we're Americans, so we don't do metric). It's a quick way to lose weight but don't try it at home. This has alleviated the extreme discomfort of the ascites, although it has introduced a new, but temporary discomfort of its own as the various organs and innards resettle into their reconfigured space. That will pass, presumably leaving Susan feeling much more comfortable than she has for a while now.
The MRI revealed a partial thrombosis (i.e., clot) in the portal vein into the liver, as well as scarring on the liver. The doctors don't know at this point what caused the scarring. More information needs to be gathered, which will be done via
- a liver biopsy,
- an analysis of the withdrawn ascites fluid,
- and a "chem 20" blood test (a comprehensive metabolic panel of 20 chemical tests performed on serum (the portion of blood without cells).
Susan's overall blood results from Monday were in or close to normal range, including bilirubin for liver function, so there's no medical emergency involved. The ascites fluid analysis is already in the works. Susan will probably have the chem 20 done at NYU and possibly the liver biopsy as well, but her Boston team is OK with her waiting on these until her next DFCI visit in early February (don't know the exact date yet). By the way, the skin problems reported on previously in this blog are also most likely attributable to the liver problem, rather than GVHD as once speculated, so we'll hope for improvement on that score as well once the liver issue has been successfully addressed.
When I get a firm date for the next DFCI visit and/or other significant information, I'll post it, but as I can't anticipate when that will be, you might want to check on the blog periodically. Of course, the next full report will be after the February visit.
Tuesday, January 5, 2010
DAY +215: Light at the End of the Tunnel?
Top Line: Blood Tests results were decent; no current evidence of GVHD; liver issue being worked through
Today Susan met with Dr. Cohen, a "really fabulous" hepatologist according to Bob. The results of the late afternoon MRI were not available but, pending those, Dr. Cohen said the problem is likely either a clot in the portal vein or VOD (remember veno occlusive disease?). Whatever the cause of the liver problem, the liver issue is the cause of the ascites. However, he thinks that her test results overall are pretty good.
So, pending the determination of root cause and corresponding treatment, Dr. Cohen wants to eliminate the ascites, which will be done simply by withdrawing all the fluid via a syringe. It could take a while (remember how many pounds of excess fluid Susan carried the last time ascites was an issue), but the procedure is straightforward and not a cause for concern. It is scheduled for 11:00 AM tomorrow, so it's another night in Boston. Once the underlying liver issue is dealt with, the ascites should not return.
I'll blog again tomorrow with what I expect will be the final update for the current DFCI visit.
Today Susan met with Dr. Cohen, a "really fabulous" hepatologist according to Bob. The results of the late afternoon MRI were not available but, pending those, Dr. Cohen said the problem is likely either a clot in the portal vein or VOD (remember veno occlusive disease?). Whatever the cause of the liver problem, the liver issue is the cause of the ascites. However, he thinks that her test results overall are pretty good.
So, pending the determination of root cause and corresponding treatment, Dr. Cohen wants to eliminate the ascites, which will be done simply by withdrawing all the fluid via a syringe. It could take a while (remember how many pounds of excess fluid Susan carried the last time ascites was an issue), but the procedure is straightforward and not a cause for concern. It is scheduled for 11:00 AM tomorrow, so it's another night in Boston. Once the underlying liver issue is dealt with, the ascites should not return.
I'll blog again tomorrow with what I expect will be the final update for the current DFCI visit.
Monday, January 4, 2010
DAY +214: Inconclusive - MRI Tomorrow
Top Line: A short but not as sweet an entry as we'd like:
Susan and Bob were at Dana Farber today as scheduled. Her liver took front an center. As you may remember, the last blog entry indicated that some level of ascites had returned, and you may also remember that the ascites is a result of liver issues.
The ascites has worsened over the past month so Dr. Soiffer had an ultrasound done. The results were inconclusive and he therefore wants Susan to see a liver specialist and have an MRI, which is scheduled for late tomorrow afternoon (the first available slot). The Siegels are staying in Boston tonight and we should know more by tomorrow evening. I'll blog again as soon as I have news.
Susan and Bob were at Dana Farber today as scheduled. Her liver took front an center. As you may remember, the last blog entry indicated that some level of ascites had returned, and you may also remember that the ascites is a result of liver issues.
The ascites has worsened over the past month so Dr. Soiffer had an ultrasound done. The results were inconclusive and he therefore wants Susan to see a liver specialist and have an MRI, which is scheduled for late tomorrow afternoon (the first available slot). The Siegels are staying in Boston tonight and we should know more by tomorrow evening. I'll blog again as soon as I have news.
Thursday, December 10, 2009
DAY +189: Good News
Short and sweet folks. I'm copying in the email text received from Dr. Soiffer today:
From: Robert Soiffer
To: Robert A Siegel
Cc: Amy Joyce
Cc: Susan Kargman
Subject: RE: Pet scan and Bone Marrow Biopsy
Sent: Dec 10, 2009 3:35 PM
By both PET Scan and Bone marrow there is NO evidence of CLL or lymphoma
There is a modest amount of residual fluid (ascites) still remaining in abdomen
OK. Of course, this is wonderful news -- the transplant has done just what we hoped it would do -- but don't go breaking out the bubbly just yet. Susan continues to have her "Y"-days, largely courtesy of the ascites, and there remains, and will remain for months to come, the risk of Graft vs. Host Disease. The various ways that this can present are to a greater or lesser degree uncomfortable or worse. The condition can generally be managed through, but not always, so we are hopeful but must remain vigilant. Susan's next DFCI visit is scheduled for January 4th. Look for the next blog entry that evening or the following day.
From: Robert Soiffer
To: Robert A Siegel
Cc: Amy Joyce
Cc: Susan Kargman
Subject: RE: Pet scan and Bone Marrow Biopsy
Sent: Dec 10, 2009 3:35 PM
By both PET Scan and Bone marrow there is NO evidence of CLL or lymphoma
There is a modest amount of residual fluid (ascites) still remaining in abdomen
OK. Of course, this is wonderful news -- the transplant has done just what we hoped it would do -- but don't go breaking out the bubbly just yet. Susan continues to have her "Y"-days, largely courtesy of the ascites, and there remains, and will remain for months to come, the risk of Graft vs. Host Disease. The various ways that this can present are to a greater or lesser degree uncomfortable or worse. The condition can generally be managed through, but not always, so we are hopeful but must remain vigilant. Susan's next DFCI visit is scheduled for January 4th. Look for the next blog entry that evening or the following day.
Wednesday, December 2, 2009
Day +181: a Good Report
Top Line: blood work and preliminary quickview of PET scan look good; awaiting bone marrow results and definitive reading of scan
Susan tells me that Dr. Soiffer was "quite happy" with her progress and told her, as he gave her results, "This is where you smile." However, let's not get ahead of ourselves as the full story isn't in yet. Here are some specifics:
We did visit on Thanksgiving for desert and Susan actually looked quite good -- trim with all the weight she's lost and surprisingly perky (low light and makeup obscured the rash/blotchiness problem). If you didn't know, you wouldn't have known. Unfortunately, the day after was "the day after." Guess she dipped a little too deeply into reserves to be up for the holiday and all the preparations she did and then had to pay the price, but she has recovered. So, it continues to be an up and down affair, but the trajectory is positive overall. Remember though, there's a ways to go.
Back to you all in a week or so, and again after the January 4th Dana Farber visit.
Susan tells me that Dr. Soiffer was "quite happy" with her progress and told her, as he gave her results, "This is where you smile." However, let's not get ahead of ourselves as the full story isn't in yet. Here are some specifics:
- white count is normal
- LDH is normal
- liver function is improved, although bilirubin is still slightly elevated.
- the rash that Soiffer thought was GVHD may not be and he is referring Susan back to a dermatologist
- Dr. Soiffer thought the PET scan looked good, but it needs to be interpreted by specialist for an authoritative assessment; expect that in a day or two
- the dreaded bone marrow biopsy was difficult, but not horrendous (being drugged up helps some); it will be a week or so before results are available
- if the scan and biopsy results support the promising readings on the blood work, Susan may be taken off the liver &/or anti-rejection (Prograf) medications; for now, the Valcyte (for CMV) continues
- the next DFCI visit is scheduled for Jan 4
We did visit on Thanksgiving for desert and Susan actually looked quite good -- trim with all the weight she's lost and surprisingly perky (low light and makeup obscured the rash/blotchiness problem). If you didn't know, you wouldn't have known. Unfortunately, the day after was "the day after." Guess she dipped a little too deeply into reserves to be up for the holiday and all the preparations she did and then had to pay the price, but she has recovered. So, it continues to be an up and down affair, but the trajectory is positive overall. Remember though, there's a ways to go.
Back to you all in a week or so, and again after the January 4th Dana Farber visit.
Tuesday, November 10, 2009
DAY +159: Better here, Worse there = ?
Top Line: Susan's numbers are fluctuating, with some improving and some worsening. Tests in 3 weeks should give a clearer picture
The visit with Dr. Soiffer was somewhat inconclusive. I won't run down the specific results from the various tests, because too much seems to be changing in either direction in relatively short time frames, and then sometimes swinging back. Susan's next visit, scheduled for November 30, will include a bone marrow biopsy and a PET scan. Not fun, but that should provide a clearer picture. Incidentally, the visit will also coincide roughly with the 6 month anniversary of the transplant, which is a good time to take stock.
Some of the old nemeses are back to varying degrees: liver function issues with, perhaps, some ascites (certainly stomach pains), CMV, along with the skin/mouth issues, and this has required a re-introduction of some medications, all of which makes Susan feel worse. And, of course, the constant fatigue never left. In short, Susan's symptoms and complaints are consistent with GVHD, but the upcoming tests should enable Dr. Soiffer to be more definitive about what's going on.
That said, Susan is getting out of the house a couple/three times a week, although her forays are brief. Dr. Soiffer hasn't put any additional restrictions on her activities -- she can be guided by how she feels and what she's up for (but avoiding crowds, risk of infection, etc.) -- and he does feel she is stable enough to go three weeks until the next visit. So, while not an encouraging report, it's not really a discouraging report, either. After the visit on November 30 is when I'll blog next.
The visit with Dr. Soiffer was somewhat inconclusive. I won't run down the specific results from the various tests, because too much seems to be changing in either direction in relatively short time frames, and then sometimes swinging back. Susan's next visit, scheduled for November 30, will include a bone marrow biopsy and a PET scan. Not fun, but that should provide a clearer picture. Incidentally, the visit will also coincide roughly with the 6 month anniversary of the transplant, which is a good time to take stock.
Some of the old nemeses are back to varying degrees: liver function issues with, perhaps, some ascites (certainly stomach pains), CMV, along with the skin/mouth issues, and this has required a re-introduction of some medications, all of which makes Susan feel worse. And, of course, the constant fatigue never left. In short, Susan's symptoms and complaints are consistent with GVHD, but the upcoming tests should enable Dr. Soiffer to be more definitive about what's going on.
That said, Susan is getting out of the house a couple/three times a week, although her forays are brief. Dr. Soiffer hasn't put any additional restrictions on her activities -- she can be guided by how she feels and what she's up for (but avoiding crowds, risk of infection, etc.) -- and he does feel she is stable enough to go three weeks until the next visit. So, while not an encouraging report, it's not really a discouraging report, either. After the visit on November 30 is when I'll blog next.
Tuesday, October 27, 2009
DAY +145: a Bit of Chop in the Water
Top Line: Susan is likely experiencing some GVHD, and it's being treated
Dr. Soiffer was able to see Susan's results today and to confer back and forth with Nurse Amy, who did see Susan yesterday. Here is the summary:
- The good news -- the flow cytometry test, performed because Susan's neutracils and lymphocytes are out of balance, revealed no, repeat NO, CLL cells; in other words, the transplant is working
- The other news -- Susan's persisting body rashes and facial blotching, along with a white coating in the mouth, are indicative of GVHD (Graft vs. Host Disease); normally this would be treated systemically with steroids, but see below
- Also, Susan's liver enzymes are elevated again, which at this stage is another indicator of GVHD. She will have to go back on her hated liver pill, the one she believes was most responsible for her nausea; we shall see
- Another old nemesis has returned as well -- CMV (cytomegalovirus) -- necessitating the re-introduction of Valcyte to Susan's meds regimen
- Steroids, which would be indicated for some of her GVHD symptoms, can increase a proneness to infection, and CMV is an infection, which is why Dr. Soiffer is holding off on the steroids for the time being
- Susan will have blood work done in NYC next week, and on the basis of those results the Boston team will decide if and how to adjust treatments
- I will report via this blog as soon as we have Dr. Soiffer's assessment and direction, based on the blood work to be done; the date is uncertain at this point (maybe next Tuesday?)
- Susan is scheduled to return to Boston in 2 weeks, on November 9, and the results of that visit will be posted late that evening
No, this is not the kind of glowing report we've been accustomed to the past few visits, but remember that GVHD is a common occurence and Susan is being watched closely and treated carefully.
Otherwise, how does Susan feel about being back in NYC and what has she been doing? The answers are "good" and "not much." The sojourn in Spencertown served its purpose very well, but it was time for a change of scene. Bob is now available seven days a week and he doesn't have to do all that driving. People can stop by to help out or just say hello when Susan is up to it. The Siegels have been able to eat out cautiously and sparingly. And Susan got to see her first movie since May -- they went to a 2PM showing of The Invention of Lying. There were four other people in the theatre, which was the idea. Of course, with these new test results, it will be prudent for Susan to curtail her already limited activity somewhat more.
Again, expect updates in a week or so after the next bloodwork, and then on November 9th after Susan's next Dana Farber visit.
Monday, October 26, 2009
"No News is" . . . No News
Susan went up to Dana Farber today, Bob driving, to see Dr. Soiffer. Unfortunately, Dr. Soiffer was out with what may be the flu. Susan did submit to her usual tests, but we need to wait for Dr. Soiffer to interpret the results. I'll post again when we know more. It may be tomorrow, it may be a few days.
Monday, October 5, 2009
DAY +123: Good Blood, Bad Tooth
Top Line: On the oncological front, Susan is progressing well; on the dental front, she's hurting after a tooth extraction today
Dr. Soiffer was not available today, but who needs or wants a doctor when there's a good nurse available. Nurse Amy was pleased with Susan's progress. Here are some details:
Yesterday (Sunday) we surprised and delighted Susan. Cousins Leslie and Rudy drove up from Granby, Connecticut to visit. Susan came out on the front porch to greet them upon arrival and noticed a figure in the back seat, whom she assumed to be Leslie's father, Uncle Joe. Imagine her surprise and delight when who emerges from the back seat but Uncle Sonny, just flown up from Florida expressly to see Susan.
With Uncle Sonny there (our mother's older brother, for those who don't know) I could not not be there too, so an hour or so later Maria and I showed up, which was also a complete surprise to Susan. Thank God Susan's heart is almost as strong as her sense of design. With Cici there as well ("babysitting" Susan in Bob's absence, he and Charley then being en route back from visiting his mother in North Carolina), we had a very companionable circle of seven to enjoy the afternoon together.
I mention this because I'm pleased to be able to report that Susan looked good to me, particularly compared to the last two times I had seen her. True, she's lost 40 pounds, but that looks good off her. 41 would be too much, but down 40, she's the svelte little number Bob married back in 1980. Her energy level was decent, her voice was strong, her demeanor was perky. If you assumed she was simply partial to headscarves (or do we have a closet Muslim in the family?) and perhaps had had a bit too much sun, compromising her complexion somewhat, you would not know if you did not know.
The others needed to leave earlier, but Maria and I hung around until Bob got back around 7 last evening, having driven up from the City after the flight up from Charlotte. The poor man's been pushing. And he needs to leave early tomorrow morning for several days of business in the City. Susan's babysitter (she chose that term, not me; in my day, we used to call it a "lady's companion") is going to be Maria, who decided to preempt me in the rotation. She'll drive up tomorrow morning and spend a few days with Susan, shopping, organizing, arranging, re-organizing, shopping some more, re-arranging and generally doing the things those two love to do together, within the limits of Susan's energy. Susan will also get much better cooking out of the deal than she would have with me there.
Finally, while no firm decision has been made yet, Susan will probably return to NYC not too long after next weekend. No subways. Mask and gloves when she ventures forth. But hey, it's Manhattan.
So, all in all, a good report. Look for the next one sometime in the evening of October 26th.
Dr. Soiffer was not available today, but who needs or wants a doctor when there's a good nurse available. Nurse Amy was pleased with Susan's progress. Here are some details:
- All Susan's tests/blood work looked good, except for the liver function, which is slightly out of range and needs to be watched but is not a cause for undue concern at its current level
- Everything looking good includes potassium levels. Yea! No more horse pills, although a continued focus on bananas would be prudent
- Susan was taken off Valcyte (prescribed to treat/prevent cytomegalovirus) in favor of a milder medication, so she may start to feel a little better on that count alone
- Susan's rash, face and body, persists but its intensity and the discomfort it has been producing seem to be somewhat reduced; it is what it is and will be what it will be; continue to treat it with lotions and cremes
- Susan is indeed cleared to eat at restaurants, provided they are bad restaurants with few patrons, but she must exercise caution, e.g., no salads, fresh fruits/vegetables (unless peeled/cooked), etc.
- The good news/bad news story is that Nurse Amy cleared Susan to start using a toothbrush (about time! you would say if you'd been anywheres near her these past months), but the tooth extraction she underwent following her DFCI visit means it will still be a while before she can exercise her new permission
- The next Dana Farber visit (and next planned update of this blog) will be Monday, October 26th
Yesterday (Sunday) we surprised and delighted Susan. Cousins Leslie and Rudy drove up from Granby, Connecticut to visit. Susan came out on the front porch to greet them upon arrival and noticed a figure in the back seat, whom she assumed to be Leslie's father, Uncle Joe. Imagine her surprise and delight when who emerges from the back seat but Uncle Sonny, just flown up from Florida expressly to see Susan.
With Uncle Sonny there (our mother's older brother, for those who don't know) I could not not be there too, so an hour or so later Maria and I showed up, which was also a complete surprise to Susan. Thank God Susan's heart is almost as strong as her sense of design. With Cici there as well ("babysitting" Susan in Bob's absence, he and Charley then being en route back from visiting his mother in North Carolina), we had a very companionable circle of seven to enjoy the afternoon together.
I mention this because I'm pleased to be able to report that Susan looked good to me, particularly compared to the last two times I had seen her. True, she's lost 40 pounds, but that looks good off her. 41 would be too much, but down 40, she's the svelte little number Bob married back in 1980. Her energy level was decent, her voice was strong, her demeanor was perky. If you assumed she was simply partial to headscarves (or do we have a closet Muslim in the family?) and perhaps had had a bit too much sun, compromising her complexion somewhat, you would not know if you did not know.
The others needed to leave earlier, but Maria and I hung around until Bob got back around 7 last evening, having driven up from the City after the flight up from Charlotte. The poor man's been pushing. And he needs to leave early tomorrow morning for several days of business in the City. Susan's babysitter (she chose that term, not me; in my day, we used to call it a "lady's companion") is going to be Maria, who decided to preempt me in the rotation. She'll drive up tomorrow morning and spend a few days with Susan, shopping, organizing, arranging, re-organizing, shopping some more, re-arranging and generally doing the things those two love to do together, within the limits of Susan's energy. Susan will also get much better cooking out of the deal than she would have with me there.
Finally, while no firm decision has been made yet, Susan will probably return to NYC not too long after next weekend. No subways. Mask and gloves when she ventures forth. But hey, it's Manhattan.
So, all in all, a good report. Look for the next one sometime in the evening of October 26th.
Thursday, September 17, 2009
DAY +105: A Good Report: the inside scoop
Top Line: Susan gets A+ for "most improved award" but don't break out the bubbly just yet
So, the short version is: Susan's lab results and physical exam indicate she is coming along nicely. The reason not to get too excited yet is this: Susan has now moved beyond the high danger period for infections and pre/post-procedure reactions (of which, you'll remember, she had more than her share), but she is now entering the highest risk period for chronic GVHD. Mild cases are not uncommon and not serious, but GVHD has the potential to become nasty and dangerous. So we must watch and wait.
For those who want the long version, read on.
Yesterday Susan saw a dentist in Arlington (Mass.) and an oncologist in Boston. You know about Boston, but why the dentist, you might wonder? And why Arlington? Here's why . . .
Last week Susan had a terrible toothache and very pronounced swelling, as if she had an oversized wad of chewing tobacco in her cheek, which, of course, she didn't. The pain was accompanied by a number of other of the usual old complaints, in particular, nausea. Bob established and maintained contact with Dr. Soiffer, so she was being monitored. I was able to stop by Saturday for a bit and she did not look or feel good. Fortunately, time and antibiotics brought down the swelling and reduced the pain to the point where, by Monday, Susan was up to a galavanting-around-the-area-shops-and-museums run with her faithful companion Cici.
I relieved Cici Tuesday evening, pleased to discover that Susan looked and felt much better. At that point the plan was to see Soiffer Wednesday PM and then probably stay over in order to see an oncologically oriented dentist that Soiffer had lined up for Thursday. Turns out, though, that Susan's (and coincidentally, Cici's) former dentist in the City had bought a practice in Arlington (just outside of Boston) and was able to see her on short notice early Wednesday afternoon.
The problem turned out to be with tooth #30 (you all know which one that is, right?), site of a failed root canal which is non-restorable and in need of extraction. The good news is that Dr. Maniscalco felt the now contained state of the infection indicated that Susan's immune system, aided by the penicillin, was functioning at some non-negligible level -- Hooray! -- and that the extraction could wait for a couple of weeks until her next trip to Boston.
Next stop, Dana Farber Cancer Institute in Boston. Based on the blood work and X-ray Susan had upon arriving, here's what Dr. Soiffer had to say:
The next DFCI visit is scheduled for Monday, October 5th. Until then . . . .
So, the short version is: Susan's lab results and physical exam indicate she is coming along nicely. The reason not to get too excited yet is this: Susan has now moved beyond the high danger period for infections and pre/post-procedure reactions (of which, you'll remember, she had more than her share), but she is now entering the highest risk period for chronic GVHD. Mild cases are not uncommon and not serious, but GVHD has the potential to become nasty and dangerous. So we must watch and wait.
For those who want the long version, read on.
Yesterday Susan saw a dentist in Arlington (Mass.) and an oncologist in Boston. You know about Boston, but why the dentist, you might wonder? And why Arlington? Here's why . . .
Last week Susan had a terrible toothache and very pronounced swelling, as if she had an oversized wad of chewing tobacco in her cheek, which, of course, she didn't. The pain was accompanied by a number of other of the usual old complaints, in particular, nausea. Bob established and maintained contact with Dr. Soiffer, so she was being monitored. I was able to stop by Saturday for a bit and she did not look or feel good. Fortunately, time and antibiotics brought down the swelling and reduced the pain to the point where, by Monday, Susan was up to a galavanting-around-the-area-shops-and-museums run with her faithful companion Cici.
I relieved Cici Tuesday evening, pleased to discover that Susan looked and felt much better. At that point the plan was to see Soiffer Wednesday PM and then probably stay over in order to see an oncologically oriented dentist that Soiffer had lined up for Thursday. Turns out, though, that Susan's (and coincidentally, Cici's) former dentist in the City had bought a practice in Arlington (just outside of Boston) and was able to see her on short notice early Wednesday afternoon.
The problem turned out to be with tooth #30 (you all know which one that is, right?), site of a failed root canal which is non-restorable and in need of extraction. The good news is that Dr. Maniscalco felt the now contained state of the infection indicated that Susan's immune system, aided by the penicillin, was functioning at some non-negligible level -- Hooray! -- and that the extraction could wait for a couple of weeks until her next trip to Boston.
Next stop, Dana Farber Cancer Institute in Boston. Based on the blood work and X-ray Susan had upon arriving, here's what Dr. Soiffer had to say:
- The X-ray was negative, indicating that the fluid in the base of the lungs was gone
- the lab results were all in acceptable range, except for
- you guessed it -- low potassium. Soiffer is not particularly concerned, but Susan needs to continue taking the horse pill-sized supplements (which she cuts in half for manageability) and it won't hurt to beef up her banana consumption
- since her liver function is now OK - the days of VOD and ascites are gone - she can discontinue the Actigal and also the water pill; that's two pills down and 27 or so to go
- Soiffer is also considering tapering off her immune suppression medication and may do so if the next visit's results continue to be encouraging
- Susan does now have pretty much a full body rash, which is quite uncomfortable and for which she's been prescribed a steroid creme; the rash probably indicates a mild case of GVHD (graft vs. host disease), but that's not unusual and not a cause for concern at this point; of course, it must be watched
- Soiffer explicitly rated Susan's progress as "A+" (of course, the grade inflation practiced by Harvard Medical School professors is notorious). When pressed, he said that it was actually a measure of improvement rather than an assessment of current condition against some absolute standard. In fact, he feels she's now at a level of progress he would expect to see in a "normal" patient (i.e., one who never experienced the complications Susan had) who was doing well. So let's make it a "B+/A-".
- Dr. Soiffer went so far as to say that Susan could now relax the dietary restrictions, though still exercising caution. She has even been cleared to eat in restaurants, although he recommended poor restaurants with very few patrons. She still needs to avoid crowds and wear a mask when around people and it's difficult to eat with a mask on. We celebrated after the appointment by following Soiffer's recommendation -- the food court adjacent to DFCI qualifies as poor in most anybody's book and it was easy to find a back table with no people around. Susan ate a bit of less than mediocre spaghetti and meatballs for her first "restaurant" meal since May. She was underwhelmed by the experience.
The next DFCI visit is scheduled for Monday, October 5th. Until then . . . .
Wednesday, September 16, 2009
DAY +104: A good report card
The net: Dr. Soiffer is very satisfied with Susan's progress.
It was a long day, so I'm going to postpone the detailed update until I get home tomorrow and can write more coherently and comprehensively. Check back Thursday, early evening.
Tuesday, September 15, 2009
DAY +103: DFCI visit postponed until 9/16
Hi, all. Long time, no blog.
This is not exactly the promised update from Susan's scheduled 9/14 DFCI visit, the reason being that Dr. Soiffer suddenly became unavailable yesterday. The visit has been moved to tomorrow, September 16th.
With Bob needing to be back in the City on Wednesday, I've been conscripted for driver duty and am planning to go up to Spencertown tonight to be at the helm for the round trip shuttle tomorrow. That means I get to put questions directly to Dr. Soiffer. The consult is scheduled for 4 PM, so any blog posting won't be until late tomorrow night or else sometime on Thurday.
Stay tuned for the real update.
This is not exactly the promised update from Susan's scheduled 9/14 DFCI visit, the reason being that Dr. Soiffer suddenly became unavailable yesterday. The visit has been moved to tomorrow, September 16th.
With Bob needing to be back in the City on Wednesday, I've been conscripted for driver duty and am planning to go up to Spencertown tonight to be at the helm for the round trip shuttle tomorrow. That means I get to put questions directly to Dr. Soiffer. The consult is scheduled for 4 PM, so any blog posting won't be until late tomorrow night or else sometime on Thurday.
Stay tuned for the real update.
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