Susan's Recovery Chronicle: DAY +14: A Tale of Two Patients

Tuesday, June 16, 2009

DAY +14: A Tale of Two Patients

Top Line: Susan's transplant-related numbers look good, but her pain, fever, and urinary tract/kidney issues remain

As Callie indicated in her post earlier today (Thanks, Cal, for jumping in), the results of the blood work are quite good, which suggests that the transplant and Susan's body are cooperating very well up to this point. Most of the problems that have arisen appear to be coincident (i.e., not related to and not expected with a transplant), although it's fair to think that Susan's condition right now makes her an easy target for opportunistic assaults.

Yesterday was difficult, with Susan arriving at DFCI in pain for a 10 AM consult and spending the entire day being tested and evaluated before finally being re-admitted, but there's no need to recount the blow-by-blow now that it's history. As of this evening, here's the situation:

Thankfully, the pain subsided by this morning to a point where she has not needed morphine today
She continues to be on antibiotics to deal with the fever and the inflammation that now appears to be localized primarily in the right kidney.
The fever may be the result of the inflammation which may be the result of kidney stone(s) which may or may not have been passed. All of this "may-ness" is indeed because the doctors are uncertain. The CT scans that have been done are inconclusive.
What can be done (and may be done tomorrow to provide some clarity) is a cystoscopy to examine the urinary tract up to the kidney with the possible insertion of a stent to relieve pressure and facilitate passing whatever needs to be passed
However, the procedure and the stent risk introducing bacteria and further infection, and Dr. Doyle, her lead urologist, prefers to give the antibiotics more time to show results. If the fever and inflammation have not improved significantly by tomorrow, then the cystoscopy becomes likely
Susan also has oral mucositis (the "sore throat" I reported Sunday), which is a painful inflammation and ulceration in the mouth and throat. Understandably, she hasn't been able to eat, but she's getting nutrition and fluids intravenously and is able to sip enough to continue working at her full-time job -- taking a gazillion pills a day. Mucositis is commonly experienced by transplant patients, and those undergoing chemotherapy and/or radiation, so this is not unexpected. It does seem to be abating, but it's too soon to tell whether this is a slight and temporary lull or real improvement on the way to resolution.

Finally, your comments are not trees falling in the forest unheard. Susan wants everyone to know how much she appreciates all the good wishes and encouragement you've been sending her (keep 'em coming), and she apologizes that she's not yet feeling up to responding to you individually. Hopefully, the day will come soon when she's back in touch with each one of you by email and phone. REMINDER: those few of you who are posting comments as "Anonymous" and not signing them (typing your name at the end), you truly are anonymous. Unless that's your intention, time to fess up so Susan can tell you're you.

4 comments:

HarrietJune 16, 2009 at 11:08 PM
Susan, I'm so sorry that you're having pain and "coincident" problems. I hope you feel much better very soon and are able to go back to your apartment and think about good things like how to rearrange the furniture. I'm so glad to hear that the counts have come up.

Much love and healing thoughts,
Harriet (Bertsche)
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AnonymousJune 17, 2009 at 1:27 PM
Hi Susan, Just wanted to let you know that you are in our constant thoughts and we are sending you all our best wishes. Hope you are feeling better by today! All our love, Becky and Michael
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AnonymousJune 17, 2009 at 3:09 PM
Susan, et al. ....
We've been following the daily posts and cringe with each "coincident problem" and cheer seeing your blood work get only better. We now have a working definition of the hero...it's Susan. You're an inspiration to all of us....
Dick and Catherine in California
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UnknownJune 18, 2009 at 1:26 PM
Thank you, Jerry for the detailed update. So glad much of the news is so good, and am sorry about the UTI and pain which makes it heavy sledding, Susan. Hope you will soon be free of that and mucositis. I think of your bravery often and know most people would not do nearly as well as you have every single day since you were diagnosed.

If Bob can lay hands on a WSJ there is a nice article about Columbia County today.

Pouring in NY, but we are told there is no rain in Seattle and that is because we have had it all. At least it is cool. Is there anything at all I can send you? Can you have flowers or are they banned, or you are surrounded already? Love to you and Bob and Cece and Callie and all
who are supporting you through this time. Diana
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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

Tuesday, June 16, 2009

DAY +14: A Tale of Two Patients

4 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