Susan's Recovery Chronicle: mid-day update Sunday

Sunday, May 31, 2009

mid-day update Sunday

On the continuing saga of Susan's connections:

In Friday's post we reported that the heplock in Susan's left wrist (Heparin IV lock, a peripheral intravenous line), which had become quite painful, needed to be relocated to the right wrist. By last night, it had become so uncomfortable in the right wrist that the line was removed. She also had a bout of nausea, so it was not a good night for sleep and recuperation. However, she does sound fine today and not too much the worse for wear.
Rob Soiffer, her lead transplant doctor was in to see her around noon, and they decided to move the heplock back to her left wrist, as it is important to maintain two means of access to her bloodstream. Despite these issues, Soifer remarked that Susan is the healthiest patient he's dealing with right now. Going into a transplant, the healthier the better. We'll take it.
The culture that has been maintained on the infection in the PIC line is now negative, so that problem seems to be resolved. However, they are planning to remove the PIC line on Tuesday after the infusion of the donor stem cells and to install a double PIC line a couple of days later.

Despite the few small speedbumps, Susan is still on schedule - final pre-transplant chemo treatment 1:30 AM Monday morning, a day off on Monday, transplant sometime on Tuesday. The chemotherapy is working well; Susan's white count is down around 1.2 (that is, 70% below the bottom of the usual range of 4,000-10,000), this from a high of 318. It will likely decline even further by Tuesday. This is good.

Callie and Charley are returning to New York today, but I'm going up to Boston tomorrow and will stay through Friday.

*******************************

And regarding our growing photo gallery . . .

Callie posted a photo yesterday (taken surreptitiously by our undercover operative) of the gang behind the recent rash of unsolved bank robberies in the Boston area. They had convened in Susan's room to plan their next heist, figuring a private room in the transplant unit of an oncology ward would provide great cover.

Above are three members of the gang -- Chazamatazz, Nate Lightfingers, and the Callalily Kid (in front, seated) -- caught by one of our hidden cameras in a rare moment of relaxation. Notice the glove on Nate's left hand, thin enough not to impede his exquisite touch with a safe's dial while ensuring that no prints will be left behind.

The question on all our minds is: is Susan, whose room seems to have become the gang's headquarters, an innocent dupe, a member of the gang, or, perhaps, the mastermind behind the whole operation?

7 comments:

CharleyMay 31, 2009 at 6:56 PM
Aunt Susan,

Just wanted to wish you all the best in the couple of days before your procedure. The strength and courage that you've displayed over these last couple of weeks has truly been inspiring to me, encouraging me to do my best, especially with my last couple of weeks of school work. Simply put, you have been my hero of the month. (Not an easy feat!) Keep on keeping on Aunt Susan -- I'll give you a HUGE hug and a kiss the next time I see you.

Love,

Charley (K.)
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AnonymousJune 1, 2009 at 9:08 AM
Susan,
The entire Herman clan wishes you the best and we want you to know that we are all thinking of you!!
Love,
Harriet, Jack
Amy, Jason and Max
Gaby, Philip, Asher and Oliver
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AnonymousJune 1, 2009 at 10:18 AM
Hi Guys,
So glad all is going well. Love the doctor's comment on Susan's good health. Looking forward to more such good news in coming days.
We missed you all in CC this weekend. Nansi and Steve's party was lovely but not the same without you all there.
Much love, Susan and Harry
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AnonymousJune 1, 2009 at 11:21 AM
Susan,
We are all in there pulling for you. I have en saved a Red men seat for you.
Pete
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Emily MadisonJune 1, 2009 at 2:57 PM
Dear Susan,

I'm so glad that I'm able to follow your progress here (so I don't have to bug Callie too much!) You have been in my thoughts constantly, and I will of course be thinking of you this weekend while enjoying your beautiful house for Rachel's celebration.

Much luck and love,

Emily
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Alex FiorilloJune 9, 2009 at 7:04 PM
Dear Siegels,

Mom just shared the blog with me. You are all in my thoughts- but most of all you, Susan. You are one tough cookie so I know all will be OK in the end. My warmest and positive thoughts are with you.

Alex
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NinaJuly 4, 2009 at 3:27 PM
My brother will be undergoing a stem cell transplant for AML leukemia soon at City of Hope. I googled blogs about transplants and yours came up.

Best of continuing good luck for a FULL cure and recovery.

Blessings,

Nina VandeWater
Nashville, TN
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Replies

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Susan's disease

Chronic Lymphocytic Leukemia (CLL) is a slowly progressive form of lymphocytic leukemia, characterized by an increased number of B lymphocytes, one of 5 types of white cells in the marrow and blood (hence the concern when white cell counts are elevated). The role of B lymphocytes is to produce antibodies to help combat infectious agents such as bacteria and viruses. With CLL, B lymphocytes multiply unchecked and, in the absence of threats to combat, will attack healthy cells and tissue. It is common to experience enlargement of the lymph nodes and spleen as the disease progresses. CLL is the most prevalent form of leukemia and occurs predominantly after age 55, although Susan, ever the precocious one, was 50 when she was diagnosed.

Susan's diagnosis came in December, 1999, when routine bloodwork revealed an abnormally high white count. After evaluating the several world class cancer centers in the US, she settled on Boston's Dana Farber Cancer Institute (DFCI), affiliated with Harvard Medical School.

Susan was fortunate to be introduced by mutual friends to Dr. Lee Nadler, a Senior Vice President at DFCI and Professor of Medicine at Harvard Medical School. Dr. Nadler, who does not normally take on a patient load, agreed to become Susan's primary oncologist and has, over the years, arranged for her to see the appropriate specialists as needed, whether at DFCI or other institutions.

Susan underwent a regimen of chemotherapy from May through September of 2001 which provided her a strong remission lasting until the Spring of 2005, when elevated bloodcounts indicated that additional treatment was required. Tests revealed that the locus of the disease at that point was in her spleen, and she underwent a successful splenectomy operation in August 2005, enabling her to reestablish her remission.

Of course, there's a wrinkle. Over the past couple of years blood sample analyses have shown the presence of both Hodgkins Lymphoma and non-Hodgkins Lymphoma cells, suggesting that the disease has been morphing, muddying the waters as far as a clearcut diagnosis is concerned. There is no label for what Susan has (we are calling it a variant of CLL, for simplicity's sake). However, it doesn't really matter. The course of treatment at this point is the same: a stem cell transplant.

Although Susan has been fortunate enough to be essentially asymptomatic all these years, her white cell counts have gone up as high as 320,000, only to be brought back down to a reasonable level through chemotherapy. To put that number in perspective, a healthy individual's count usually ranges between 4,000-10,000. The fact that she doesn't look sick and generally feels fine does not mean that she doesn't have a serious and progressive illness.

From the beginning, Dr. Nadler had indicated that at some point the disease would advance to where the best course of action would be a transplant procedure, which is dangerous but potentially curative. That point is now.

Susan's Transplant Procedure

RATIONALE for the TRANSPLANT

While the right protocol of chemotherapy can produce a remission in patients with blood cancers, these remissions are almost always temporary, not curative. The number of remissions a particular patient's disease may enable him or her to realize is very limited - sometimes only one, sometimes several - but in general any successive remission(s) is less robust and of shorter duration. The time comes when the best approach is to go for a cure, which is what a successful blood and marrow stem cell transplant can offer. The transplant entails significant risks (as outlined below), but Susan is at the point where the benefits of another remission (if successfully achieved) might be fleeting and leave her less able to tolerate the transplant at some future date.

BLOOD and MARROW STEM CELL TRANSPLANTS: the SHORT COURSE

Blood, despite its homogenous appearance as a red fluid, is actually a very complex medium that contains many different factors, all of which are generated by a person's bone marrow. In a blood cancer like Chronic Lymphocytic Leukemia (CLL) these components of the blood become unbalanced. A person with CLL produces an ever increasing quantity of white cells in the blood over time, particularly B lymphocytes.

White blood cells , including lymphoctyes (B lymphocytes, T lymphocytes, et al.) act as the body's defense against infection and other foreign bodies, and so they naturally increase to combat such threats, but when the threat has been eliminated, the white cell count returns to its normal level. To oversimplify, elevated levels of white cells, pumped out by malfunctioning bone marrow, with no disease or infection to neutralize, begin attacking healthy tissues and systems. This is the case when a person has CLL.

If the bone marrow which produces the white cells can be restored to its proper functioning, then the white cell count will return to normal. A blood and marrow stem cell transplant can achieve this by largely destroying the sick person's marrow through chemotherapy and/or radiation and then replacing it with healthy marrow. To be more accurate, it is not the physical marrow which is destroyed and replaced but rather stem cells within the marrow responsible for the production of red cells, platelets, and the various kinds of white cells, including the lymphocytes. Therefore, the procedure is most accurately called "Blood and Marrow Stem Cell Transplantation" or Stem Cell Transplantation, although it is often referred to loosely as a Bone Marrow Transplant since the diseased marrow is being regenerated via the healthy stem cells of the donor.

There are two basic kinds of Transplants: autologous and allogeneic. In the autologous version, the patient's own stem cells are harvested during a period of strong remission when healthy stem cells predominate. The blood or marrow with the healthy stem cells is then frozen for later use when the disease has returned in force. In the allogeneic version, the healthy stem cells are provided by a donor whose tissue type closely matches that of the recipient. Susan will be having an allogeneic transplant.

In fact, there are two types of allogeneic transplants - the full or standard transplant (myeloablative transplant) and the so-called "mini-transplant" or "reduced intensity transplant" (non-myeloablative transplant). The standard transplant involves very high doses of chemotherapy and/or radiation in the conditioning phase (the week prior to the transplant), which is very hard on the recipient's system. The mini-transplant involves less intensive conditioning and is better tolerated by older patients (roughly 55 years old and up; Susan, like Jack Benny, is 39 . . . for the 22nd time). The standard transplant works by destroying the diseased bone marrow nearly completely, but with very significant stress on the recipient's system. The mini-transplant works by relying on the donor's immune cells, whose efficacy is bolstered by a drug protocol, to destroy the remaining cancer cells. Susan's medical team has determined that the mini-transplant is the most appropriate procedure for her.

The week or so prior to the actual transplant is referred to as the "conditioning phase" and is used to destroy as many of the cancer cells as possible as well as to suppress the patient's immune system to minimize rejection of the donor's cells. This is done via chemotherapy and/or full body irradiation, and can be very taxing. The actual transplant procedure is similar to a blood transfusion but takes several hours to accomplish.

In the immediate post-transplant period, the patient's immune system is severely compromised and he/she needs to be kept in a protected environment (first the hospital and then a kind of half-way house) and closely monitored. Within a month or so of the procedure, normal blood function is re-established to a degree sufficient to allow the patient to return home, but the environment needs to be very carefully managed to minimize infectious agents. Chronic Graft Versus Host Disease (GVHD - see below for "Risks") can be a significant risk for a year or more after the procedure.

RISKS

The conditioning procedure for an allogeneic stem cell transplant may produce a variety of unpleasant side effects, from mild to quite severe, but these are generally manageable and not considered life threatening. Because it involves a less rigorous conditioning, the "mini" version of the allogeneic transplant (the kind Susan is having) generally causes fewer and less difficult complications. However, there are still three major risks to consider with an allogeneic transplant :

1. Disease or infection.
The conditioning process essentially destroys the patient's immune system, leaving him or her virtually defenseless against disease or infection in the pre- and immediate post-transplant period. Therefore, it is extremely important that the patient's environment be carefully controlled to minimize contact with infectious agents. Measures include filtering the air in the room, requiring visitors to wear masks, ensuring frequent and thorough handwashing, eliminating raw foods (e.g., fruits and salads) from the diet, not allowing flowers or plants (which well-wishers might send) into the environment, and so forth. The medical team will also provide the patient with antibiotics and antimicrobial drugs as a preventive measure. It generally takes a month or so for the donor's stem cells to promote formation of enough blood and immune cells in the recipient for him or her to leave the protected environment.

2. Graft Versus Host Disease (GVHD)
The allogeneic transplant works largely through an effect called "graft versus tumor" (GVT), where the donor's lymphocytes identify the patient's cancer cells and destroy them. However, the donor's lymphocytes may also attack the patient's normal cells, which they might recognize as a foreign body and so a threat to be neutralized. When this happens, it is called Graft Versus Host Disease (GVHD), a complication that carries a definite mortality risk. The careful tissue matching that is done to ensure donor and recipient compatibility reduces the likelihood and potential severity of GVHD, but it cannot eliminate the risk.

The more complete the tissue matching (it is never 100%, except with identical twins), the healthier the recipient is going in, and the younger the recipient, the milder the case of GVHD is likely to be. Nevertheless, the majority of recipients will experience some degree of GVHD, despite the prophylactic drugs that the medical team administers.

GVHD occurs in two forms -- "acute" and/or "chronic." The terminology has nothing to do with the degree of severity, but rather refers to the timing. Acute GVHD occurs within the first three months, but its likelihood of occurrence diminishes somewhat with time. Chronic GVHD is what develops at some point after the period for the acute phase has passed. The risk for chronic continues for a year or more after the transplant procedure. A person who has developed and been cured of acute GVHD is still at risk for chronic, as is someone who has been symptom free even a year out.

3. Host Versus Graft Effect
Since the patient's immune system is not entirely destroyed by the conditioning regimen, it's possible for the remaining cells to reject the transplanted donor stem cells, in which case the transplant is unable to gain traction and do its work. Again, careful tissue matching between donor and recipient will reduce the likelihood of this effect to any worrisome degree, but some level of risk remains.

SUSAN'S MEDICAL TEAM

Dr. Lee Nadler - Lead oncologist and case manager - DFCI
Linda Drury - Physician's Assistant to Dr. Nadler - DFCI
Dr. Robert Soiffer - Lead transplant specialist - DFCI
Amy Joyce, Nurse Practitioner for Dr. Soiffer
Dr. Michael Grossbard - Local (NYC) oncologist and case manager - Roosevelt Hospital

Blood and Marrow Stem Cell Transplantation - a pamphlet

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Transplant Pamphlet

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http://www.scribd.com/doc/15894155/Transplant-Pamphlet?secret_password=14dot1c2s1fyv9g8j4k2

Susan's Recovery Chronicle

Sunday, May 31, 2009

mid-day update Sunday

7 comments:

Background Information

Leukemia and Lymphoma Society-Home

Dana Farber Cancer Institute - Home

Blood and Marrow Stem Cell Transplantation - a pamphlet

National Bone Marrow Transplant Link

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