Susan's Recovery Chronicle: Monday Evening Update

Monday, June 1, 2009

Monday Evening Update

Not a lot of news, which is good. Mostly we are in a holding pattern, waiting for tomorrow and the infusion of the donor stem cells. Be advised, this climactic event is not at all climactic in the happening. Susan simply gets another infusion through her PIC line, but this one is stem cells rather than chemotherapy drugs.

At this point, we do not know when tomorrow it will happen, as the frozen stem cells need to be flown in from wherever the donor was located (they don't tell us where that is, because then they'd have to . . . etc.) and then validated through some elaborate protocols, which is reassuring. I'll post from Susan's room when it begins, and again when it is completed.

Susan did not have a good day today; nothing dramatically wrong but in Bob's words she was feeling "lousy," or in Susan's "yucky." Take your pick. This is not unexpected after 4 straight days of chemotherapy. She'll probably feel a little better tomorrow. She continues to be on the antibiotic for the infection and to be receiving nutrients, including potassium and magnesium, which were found to be low, and saline solution through her heplock. Stay tuned for tomorrow's update.

13 comments:

UnknownJune 1, 2009 at 10:45 PM
Dear Susan,

I will be thinking of you tomorrow . I'm looking forward to your recovery so we can again get out to Brimfield and shop till we drop.

P.S. My mother sends her you her good wishes and her prayers.

Love,

Maria
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JohnhenriJune 1, 2009 at 10:52 PM
Susan,

Just wanted to wish you well as you go into the transplant. Hopefully it'll be steady recovery from tomorrow on. You have a lot of people thinking about you and we can't wait to see you in good health and good spirits.

All the best,

-Johnhenri
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AndyAJune 2, 2009 at 12:29 AM
Dear Susan,
Gina and Amelia join me in sending all our best wishes for a successful transplant and smooth recovery. Our thoughts and prayers are with you.
Much love to you and Bob,
Cousin Andy (Westport CT version)
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UnknownJune 2, 2009 at 7:55 AM
Dear Susan: Thinking of you, here in New York City. Wishing you well with the transplant and recovery. Hope you are feeling less yucky. So glad to to be able to get news of you. Sending positive thoughts, prayers and love your way. You have a great support system there and I believe the Newtons will be coming to Boston tomorrow for Michael's graduation.
All the best to you and Bob,
Diana
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OliviaJune 2, 2009 at 8:51 AM
I'm thinking of you all today and I hope the stem cell transplant goes well. Susan, I hope you're feeling better today.

Olivia
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UnknownJune 2, 2009 at 9:32 AM
Hi Susan,

Thinking of you and wishing you well.

Lots of love,
jill (and the rest of my family)
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Anne and MichaelJune 2, 2009 at 10:22 AM
Hi Susan -

Sending you lots of positive energy and happy thoughts for a speedy recovery. We hope all goes well today.

Anne and Michael
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Nansi FriedmanJune 2, 2009 at 11:17 AM
Hi Susan,

Just checking up on you from Spencertown and sending you good energy from the sunshine and growing things on Reed Road. I'm about to leave on a trip to the Dump to deliver the remains of the beer (formerly, ping) pong table that never made it to the party, having fallen prey to the elements in the shed below the screened porch. Just in case you missed the metaphor, we're all getting rid of the bad to make room for the good.
Kaila, Steve, Amy, Alex and Bryan join me in sending you good karma for the success of the transplant. With lots of love, Nansi
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AnonymousJune 2, 2009 at 11:30 AM
Dearest Susan,
Today's the day!!! Stem Cells to the rescue!! All your friends back here in the NYC LLS - elaborate code for New York City's Leukemia & Lymphoma Society : ) office are sending buckets of well-wishes and healing vibes your way. Despite your "yucky" day, it sounds like things are progressing well. Can't wait to read the post that says "infections - gone, CLL - gone, Susan - 100% HERE!" Until then, we will keep you all in our thoughts.

Warmest regards,
Meg
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AnonymousJune 2, 2009 at 11:37 AM
Susan,

Been following your progress and will continure to do so. This blog is great. Knowing your status if really comforting, and great that the family does not have to be bombarded with inquiries form so the so many people that love and care for you. We are all thinking of you, and sending our positive vibes for a successful transplant and recovery. Our love from all of us to you and the whole family,

Eddie, Winsome, Max, Jake & Molly
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UnknownJune 2, 2009 at 12:15 PM
I am thinking about you Susan.

Love,

Gary
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AnonymousJune 2, 2009 at 12:33 PM
Hello Susan. My mom sent me the link this morning. I am hoping everything goes well for you.

BJay
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Emily SussJune 2, 2009 at 1:25 PM
Hi Susan,

I will be sure to bring you back lots of trinkets that you can organize into boxes in the basement of your country house and then make Nate carry around.

Love,
Emily
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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

Monday, June 1, 2009

Monday Evening Update

13 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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Susan's disease

Susan's Transplant Procedure

Blood and Marrow Stem Cell Transplantation - a pamphlet