Susan's Recovery Chronicle

Sunday, May 24, 2009

Dear Friends and Family,

This blog is your source of information on Susan's treatment for and recovery from a variant of Chronic Lymphocytic Leukemia (CLL). It will be hosted by me (Jerry Kargman-brother) with editing permission and entries by Bob, Callie, and Charley Siegel as they see fit. Susan, of course, will also have editing permission. Once her recovery is underway, blogging on her own behalf may become her preferred replacement activity for shopping during her confinement of a month or so (more on that below).

My intention at this point is to keep it simple - just the information you need for background and the news you need on how Susan is doing. Background information is in the box below. The news will be in the form of ongoing blog posts. Here is the provisional timetable for upcoming events:

May 27: Susan and Bob travel to Dana Farber Cancer Institute (DFCI) in Boston; hospitalization will be at Brigham and Women's Hospital, adjacent to DFCI
May 28: Susan begins a 4-day conditioning period of chemotherapy
May 31: Last day of conditioning treatments
June 1: Recovery Day
June 2: Transplant Procedure (this is similar to a blood transfusion, but may take 2 or more hours. It is NOT a surgical procedure.)
June 3: Susan is released to a specially prepared, environment controlled apartment (Church Park Apartments, Apartment 702, 255 Massachusetts Ave, Boston, MA 02115)
June 4-30: Susan recuperates in apartment with daily trips to DFCI for treatments and monitoring
July 1?: Susan cleared to return home, but will require careful monitoring and weekly visits to DFCI.

IMPORTANT NOTE: Unfortunately, Susan can NOT receive gifts of flowers, plants or food. These items may introduce infectious elements which her depleted immune system will not be able to handle.

23 comments:

HarrietMay 27, 2009 at 10:05 PM
Susan, I will be watching your progress and hoping things go as easily as possible. I will be thinking of you and hoping to see you during your recuperation.
Much love,
Harriet
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UnknownMay 27, 2009 at 10:27 PM
Susan,
We are thinking of you and look forward to seeing you soon up in the country...
Much love,
Barb and Peter
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amydubinMay 27, 2009 at 10:31 PM
Dear Susan,
Please thank Callie and Jerry for allowing all of us, thru this blog, to keep up with your progress and communicate with you during your recuperation. David and I often talk about your incredible courage and resilience, which is an extraordinary example for all of us.
Barb Kenner told me that your country house is totally amazing, and that she is personally moving in to your kitchen! I look forward to the tour.
Meanwhile, I will be thinking about you and wishing you the best.
Much love,
Amy
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Pat and LannyMay 28, 2009 at 12:07 AM
Susan & family - Pat and I will be keeping you in our thoughts and prayers. Bon courage.
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Kim LaTessaMay 28, 2009 at 12:51 AM
This is blog is wonderful, as it is so hard to keep everyone posted and sometimes even though we think of you all the time, we do not want to bother everyone with our calls. Susan, you are so brave and such an inspiration to us all......you have our prayers and we will bewaiting anxiously for updates and hopefully good news! Lot's of love and many blessings
Kim, David, Siena, and Jacoby
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Stacey KesslerMay 28, 2009 at 12:56 AM
Dear Susan,
Eric and I are wishing you a very quick, pain- free recovery. I am thinking of you and wishing you all the best. I plan to see you in July for a overdue wrist/ hand treatment along with much "catching up." I admire your strength and courage as you are a very, very special woman in so many ways.
Take care and see you soon...With much love,Stacey
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UnknownMay 28, 2009 at 6:51 AM
Susan

The Murray-Maloneys are all with you in our thoughts. And we so appreiciate Jerry wrtiting this blog. As your Boston friends, please know that you and Bob can call on us for anything at anytime.
Much love
Georgia
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SusiMay 28, 2009 at 8:29 AM
Susan:
You are in our hearts and our thoughts, and we are sending you all our POSITIVE ENERGY. Will be following your progress, and hope to be able to deliver get-well wishes in person in Boston soon. Your grace and courage are awe-inspiring...
Jerry and Callie, thank you so much for creating this blog.
Much love,
Susi and Pete
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AnonymousMay 28, 2009 at 8:50 AM
Thank you, Callie! Thank you, Jerry! Hello, Susan!!
This blog fills a void of much-desired information and we're very grateful for this way of "being with" you (Susan).
We're going to be in Boston on Saturday (May 30)for an evening wedding. Is it possible to visit then? We'd love to see you if at all possible!
Barbara and Will
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UnknownMay 28, 2009 at 8:55 AM
Susan: So glad to have this means of keeping track of your treatment and progress, thanks to Jerry and Callie. You and Bob have been incredible powers of example to many of us for a long time now. Your grace and guts are inspirational. Will stay in touch for the next month or so this way and look forward to seeing you back in your ever -more- beautiful- house in the country in July. Much Love, Diana
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AnonymousMay 28, 2009 at 9:33 AM
Susan - I'm so happy to be able to see your progress without bothering anyone. You are in our thoughts always and we send our best wishes for a quick and flawless recovery.
XOXOX
Tami, Rich & Nicholas
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LBMay 28, 2009 at 10:32 AM
Thank you so much for giving me access to this blog allowing Susan's friends to keep up on her progress. She is a wonderful, inspiring person and I am so glad she has the support of such a loving family. My husband has a close friend who has been through this procedure with remarkable results, and we wish the same success to Susan. An MHC friend, Lorraine
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AnonymousMay 28, 2009 at 10:38 AM
Susan & Family-
You have been nothing but hospitable and gracious to us over the years. We wish you the best of luck with your procedure and recovery. Look forward to seeing you in the Berks.
-The Schodack Girls
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RachelMay 28, 2009 at 10:42 AM
Hi Susan,
I will be following the blog and thinking of you daily. I'm sending all my love for the journey ahead. I've told Callie already but if there is anything my mother or I can do to make you or your family's life easier, we'll be there. Here's to speedy and easy recovery!
Love,
Rachel
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AlisonMay 28, 2009 at 5:57 PM
Susan,
I will be thinking of you in the coming weeks as you make this trying journey. All the best for a successful treatment and speedy recovery.
Alison
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AnonymousMay 28, 2009 at 6:44 PM
We love your courage Susan and Bob. Thank you Jerry for always coming through and to Callie and Charley-such supportive children.
Love,
Barbara (sister-in-law)
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Janine Ducoin-ArnoldMay 29, 2009 at 4:16 PM
Dear Susan,
We have been thinking of you so many times but did not want to bother you or interrupt you with a call. Thank you to your family for this informative blog and the opportunity it gives us to know how you are doing. Fred and I wish you courage (which we know you have plenty of) and only hope that your recovery will be as easy and straightforward as possible.
We'll celebrate soon the French way,with champagne!
A bientot!
Janine & Fred
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AnonymousMay 30, 2009 at 3:42 AM
Susan, Bob, and family,

I'm hoping for a successful transplant and speedy recovery.

Ed Siff
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UnknownMay 30, 2009 at 6:04 PM
Hi Susan and Family,
It's wonderful to have this opportunity to follow your progress. Adam, Hannah and I all are thinking of you Susan and wishing you all the good thoughts that we have. We all missed seeing you at the sedar this year, especially Hannah because of all the fun you contribute. You are in all of our hearts. We'll check into the blog every day.
Love,
Patty, Adam and Hannah
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UnknownMay 31, 2009 at 10:09 AM
Susan, Bob, Callie, Charlie, and family,
My father, the "other Robert Siegel" and I "the other Susan Siegel" are thinking of you and praying for your speedy and full recovery. Since my father doesn't have a computer, I wanted to enter a post here especially from him, sending you love and best wishes. We hope you can feel the positive vibes over the internet. Love to all of you. One day at a time. love, Sue Siegel Pouliot and family and Robert Siegel
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SusiJune 1, 2009 at 10:39 PM
Susan:
Have been thinking of you all day, and will be tomorrow. Wishing for success and a super-speedy recovery. The photos posted to the blog have been great -- the love and energy that surround you radiate right through those masks!
Love to all,
Susi
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AnonymousJune 2, 2009 at 5:44 PM
Hi Susan,
Well you made it through the first difficult part of your journey. How wonderful. I never had any doubt with the strength and courage you have shown throughout your disease. I only wish you better days ahead.
Rick sends is love. Can't wait to be able to speak with you. I will call when we get back to Napa next week. Lots of love, gig
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AnonymousJune 15, 2009 at 11:23 AM
Hi Susan -

Greetings from FL. I am keeping your uncles updated on everything. We all hope you are getting over the hard part of this process and onto better days.
You clearly didnt bring the Yankees much luck in Boston....hopefully the Marlins (that's our FL team) will fair better there this week!
Hope to see you when I am up there in July....

Love,
Melissa, Sonny and Nathan
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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

In the top right corner of the pamphlet's control bar is an icon that will toggle the document to full screen. Then use the +/- buttons to control the size of the viewed page. Toggle back to return to the top of the blog window.

Transplant Pamphlet

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

Susan's Recovery Chronicle

Sunday, May 24, 2009

23 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

Followers

Blog Archive

Susan's disease

Susan's Transplant Procedure

Blood and Marrow Stem Cell Transplantation - a pamphlet