Hi peterslewisofchicago-ga, and thanks for your question. My
condolences if you or a loved one are afflicted with multiple myeloma.
As usual, this is not a substitute for professional medical advice or
direct medical examination and treatment.
Having worked in the oncology field, I think I have some insight into
your question. I'll list a few more than 5 centers and physicians,
since they cover a pretty wide geographic area and there are many
great places and physicians to choose from.
==========
Top Centers
==========
As with most answers to "top" anything that has some subjective
element, the criteria used to pick the "top" centers or physicians for
any particular illness are quite variable. Below, I've tried to
select those centers (and later physicians) with significant
experience treating large numbers of patients with multiple myeloma
and who participate in current research on new therapies. My own bias
is that this helps to indicate which centers and clinicians are
well-grounded in current and past therapies and are on the cutting
edge of discovering new approaches. Exclusion, however, doesn't mean
that a center or physician doesn't offer excellent options. Also, I
have not ranked the following - the top 5 (or 10) centers and
physicians are fairly similar in their knowledge of the newest
therapies and abilities to implement them. The biggest difference may
be geographic accessibility and your own preferences.
__________________
Dana Farber Cancer Institute
44 Binney Street
Boston, MA 02115
Here's their multiple myeloma page:
http://dfci.org/pat/adult/treatment/diagnosis_page.asp?disease=multiplemyeloma
One advantage of such a large center is access to physicians from
multiple other Harvard Medical centers and specialties who will have
input into treatment options. Patients are presented at clinical
conferences on a daily basis and new developments are often
implemented in practice before they are widely known about or become
"standard of care." They also offer help with flights, housing,
etc., for the many patients who travel from around the world for their
care. Here's their visitor's guide:
http://www.dana-farber.org/pat/visitors/
__________________
M.D. Anderson Cancer Center, University of Texas
1515 Holcombe Blvd, Houston, TX 77030
1-800-392-1611 (USA)
1-713-792-6161
This is another internationally known cancer center with a great deal
of expertise in the treatment of multiple myeloma. They have a
Lymphoma and Myeloma Center that offers many cutting edge treatment
options:
http://www.mdanderson.org/care_centers/lymphoma/
__________________
Fred Hutchinson Cancer Research Center, University of Washington (aka "The Hutch")
1100 Fairview Avenue North
Seattle, WA 98109
http://www.fhcrc.org/patient/
hutchdoc@fhcrc.org
Phone: (206) 288-1024
Toll-free telephone: (800) 804-8824 (for calls within the U.S.)
Fax: (206) 288-1025
Patient Tours of the Seattle Cancer Care Alliance: (206) 288-1075
Questions about Cancer: 1-800-4Cancer
They do a significant amount of top-notch multiple myeloma clinical research:
http://www.fhcrc.org/research/diseases/multiple_myeloma/
__________________
Memorial Sloan Kettering Cancer Center
1275 York Avenue
New York, NY 10021
800-525-2225
This is again an internationally acclaimed cancer center with multiple
myeloma expertise. They are highly regarded within the oncology
community.
Here's their multiple myeloma information page:
http://www.mskcc.org/mskcc/html/3371.cfm
____________
The Abramson Cancer Center of the University of Pennsylvania
3400 Spruce Street - 2 Donner
Philadelphia, PA 19104-4283
1-800-789-PENN (7366)
Fax: 215-349-5445
http://www.oncolink.upenn.edu/
http://www.penncancer.org/
You can find the Leukemia, Lymphoma, and Multiple Myeloma center here:
http://www.penncancer.org/cancerprograms_detail.cfm?id=38
UPenn is a top notch cancer center with many clinical trials and
experts in various components of multiple myeloma therapy.
You can read more about their extensive UPenn Cancer Network here:
http://www.penncancer.com/network.cfm
You can even request an appointment online:
http://www.pennhealth.com/appoint.html
__________________
The Fox Chase Cancer Center
333 Cottman Avenue
Philadelphia, PA 19111-2497
http://www.fccc.edu/
New patient info: 215-728-2570
General info: 215-728-6900
Clinical questions of new patients: 1-888-FOX CHASE (1-888-369-2427)
e-mail: http://www.fccc.edu/contact-us.html
Their staff includes many internationally recognized experts in cancer
therapy as well as multiple myeloma treatment.
__________________
The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
The Harry and Jeanette Weinberg Building, Suite 1100
401 North Broadway
Baltimore, MD 21231
New appointments: 410-955-8964
Johns Hopkins obviously has a fantastic reputation, trading places
with Harvard Medical from year to year for position as the top medical
center in the country. Their expertise extends to treatment of
multiple myeloma. They have a large group of specialists who treat
multiple myeloma, which you can find here:
http://www.hopkinskimmelcancercenter.org/experts/experts.cfm?cancerid=120&cancername=Multiple%20Myeloma
Also of interest, researchers at Hopkins appear to have recently
discovered the cause of multiple myeloma - a rare stem cell. You can
read more here:
http://www.hopkinskimmelcancercenter.org/news/details.cfm?documentid=413
__________________
The Mayo Clinic (Scottsdale campus)
http://www.mayoclinic.org/hematology-oncology-sct/
http://www.mayoclinic.org/hematology-oncology-sct/myeloma.html
The Mayo Clinic just opened a new multiple myeloma program at their
Scottsdale campus in Arizona last month.
__________________
Duke Comprehensive Cancer Center
2424 Erwin Road,
Hock Plaza Suite 601
Durham, NC 27705
(888) ASK-DUKE
http://www.cancer.duke.edu/
Routinely listed among top hospitals in the country, they are known
for cutting edge cancer research.
__________________
H. Lee Moffitt Cancer Center & Research institute, The University of South Florida
12902 Magnolia Dr.
Tampa, Fl 33612
1-888-663-3488
They've made some big strides in multiple myeloma clinical research.
Here's a good article discussing some of their accomplishments:
http://www.moffitt.usf.edu/about_moffitt/press/press_releases/2004/20040817a.asp
They also recently launched the Multiple Myeloma Research Consortium
to accelerate the development of new multiple myeloma drugs.
http://www.moffitt.usf.edu/about_moffitt/press/press_releases/2004/20040817a.asp
They're good, but you might want to avoid them during hurricane season...
================================================================================
=========
Physicians
=========
Dr. Kenneth C. Anderson
Dana-Farber Cancer Institute
44 Binney Street
Mayer 557
Boston, MA 02115
USA
office phone: (617) 632-2144
fax: (617) 632-2140
preferred contact method: appointment phone
http://www.dana-farber.org/pat/dana-farber/detail.asp?personID=5&group=%28Clinician+and+Researcher%29
Dr. Anderson is the director of the Jerome Lipper Multiple Myeloma
Center at DFCI. The page above gives more details about his training
and qualifications.
__________________
Dr. Michael Wang
M.D. Anderson Cancer Center
Houston, TX
1-800-392-1611
Actively involved in bringing bench research on multiple myeloma to
the bedside. Here's more info:
http://www.mdanderson.org/care_centers/lymphoma/display.cfm?id=eeb94250-caa7-41c5-b3f57211babfdf03&method=displayfull&pn=7cf8cb22-c601-11d4-80fb00508b603a14
__________________
Dr. William I. Bensinger
Fred Hutchinson Cancer Research Center
1100 Fairview Avenue N., D5-390
P.O. Box 19024
Seattle, Washington 98109-1024
United States
wbensing@fhcrc.org
http://myprofile.cos.com/BENSINGER
Dr. Bensinger developed the technique of stem cell transplantation for
multiple myeloma and continues to develop novel treatment strategies
for this disease.
__________________
Dr. Leona Holmberg
Assistant Member, Fred Hutchinson Clinical Research Center
Assistant Professor, University of Washington School of Medicine
Ph.D. (Immunology), Harvard University, 1983
M.D., University of Miami, 1986
Tel. (206) 667-6447
Fax (206) 667-4937
lholmber@fhcrc.org
You can read more about Dr. Holmberg's background here:
http://myprofile.cos.com/LHOLMBER
__________________
Dr. Raymond L. Comenzo
Memorial Sloan Kettering Cancer Center
NY, NY
(212) 639-8086
He focuses on amyloidosis and multiple myeloma treatments, including
novel stem cell therapies. He has over 15 years experience in these
areas.
You can read more about him here:
http://www.mskcc.org/prg/prg/bios/532.cfm
__________________
Dr. Stephen D. Nimer
Head of Hematology/Oncology at Memorial Sloan Kettering
Distinguished leader in the field, focusing on lymphoma and multiple
myeloma. He works on stem cell transplants. He has over 18 years
experience in the field.
You can read more here:
http://www.mskcc.org/prg/prg/bios/134.cfm
You can find information regarding his lab work (if you're interested) here:
http://www.mskcc.org/mskcc/html/11371.cfm
As he states on his bio page:
" In 2001 we received one of two awards given to U.S. investigators by
The Leukemia & Lymphoma Society as a Specialized Center of Research
Excellence in myeloid malignancies. I have been active in national
hematologic organizations and currently serve on the Board of the Bone
Marrow Foundation; the Aplastic Anemia and MDS [Myelodysplastic
Syndrome] International Foundation, Inc.; the Myelodysplastic Syndrome
Foundation; and the New York Chapter of The Leukemia & Lymphoma
Society. I have been a member of the American Society of Clinical
Investigation since 1997."
__________________
Dr. Edward A. Stadtmauer
UPenn Cancer Center
Director of the Bone Marrow and Stem Cell Transplant Program, as well
as the Leukemia, Lymphoma, and Myeloma Program.
You can read a little more here:
http://www.penncancer.org/faculty.cfm?id=1835
__________________
Dr. Russell Schilder
Fox Chase Cancer Center
http://www.fccc.edu/physician_directory/medical/schilder.html
215-728-2570
Although listed in the medical oncology section, Dr. Schilder has
completed a fellowship in hematology/oncology and has a particular
interest in the treatment of lymphomas, multiple myeloma, and other
hematologic malignancies. You can read some of his scientific reports
at the site listed above.
__________________
Dr. Ivan M. Borrello
Johns Hopkins University
http://www.hopkinskimmelcancercenter.org/experts/doctor.cfm?DoctorID=80
410-955-8964
Although Dr. Borrello is only an assistant professor, he leads several
of their multiple myeloma clinical trials and appears to be a rising
star. He's particularly interested in immunotherapy for multiple
myeloma.
__________________
Dr. A. Keith Stewart
Mayo Clinic (Scottsdale, AZ)
(800) 446-227
Another rising star with a strong clinical research background.
http://www.mayoclinic.org/hematology-oncology-sct/13769316.html
Part of the Mayo Clinic's myeloma center:
http://www.mayoclinic.org/hematology-oncology-sct/myeloma.html
================================================================================
========
Treatment
========
Treatment protocols for multiple myeloma are complicated. In fact,
there have been books written on the topic:
http://biomed.humanapress.com/Product.pasp?txtCatalog=HumanaBooks&txtProductID=1-59259-916-8&isVariant=0
Basically, for any stage beyond Stage I, combination chemotherapy is
recommended. Here is a detailed discussion from the American Cancer
Society on the current state of the art:
http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Treatment_Options_by_Stage_30.asp?sitearea=
Usually chemotherapy is started with melphalan and prednisone, but
vincristine, cyclophosphamide, carmustine, and doxorubicin can also be
used. Dexamethasone (a steroid, similar to prednisone) can be
substituted for prednisone. The choice of treatment regimen is
complicated and really can't be made without a skilled physician
guiding you through the process. For example, aside from the various
side effects of the chemotherapy agents, one must also consider the
overall plan:
"The choice and dose of drug therapy depend on many factors, including
the stage of the cancer and the age and kidney function of the
patient. Another factor is whether a stem cell transplant is planned.
If that is the case, most doctors avoid using drugs that may have a
particularly damaging effect on the bone marrow such as melphalan,
cyclophosphamide, and carmustine."
Dozens of combinations of chemotherapeutic agents (and steroids,
thalidomide, etc.) have been tried in clinical trials. Most of the
chemotherapy agents have similar side effects, such as loss of
appetite, nausea, vomiting (much better now that Zofran (an
anti-emetic drug) is available), hair loss, mouth sores,
susceptibility to infections, fatigue, easy bruising and bleeding, and
so on. See the eMedicine article below for more details.
The treatment of multiple myeloma is complicated and depends on many
factors. It is also, fortunately, a quickly changing field with new
developments and treatments popping up at a rapid pace. After reading
through dozens of articles, I find that one of the best discussions of
treatment protocols comes from one of my favorite reliable medical
information sources, eMedicine. This article written by Dr. Sara
Grethlein at SUNY Upstate:
http://www.nlm.nih.gov/medlineplus/multiplemyeloma.html
The article nicely outlines the rationale behind various treatment
options such as transplants, radiation, etc. Scroll down to the
"Treatment" section for this info. Dr. Grethlein includes information
on key studies that have recently been done looking at the progression
of multiple myeloma and the effects of treatment. She combines this
with excellent non-professional descriptions of what the studies and
medical terms mean and imply.
In the next section of the above article, "Medication," Dr. Grethlein
discusses at length the various chemotherapy agents and their side
effects. This is particularly relevant to your question, as she
doesn't simply say that chemotherapy agents can cause nausea, for
example, but gives a feeling for how likely various side effects are
with each agent.
Furthermore, she details how the agents are delivered (how many days,
etc.) and how effective they are. She also discusses new agents on
the horizon, such as Bortezomib (Velcade).
Following the Medication section is a detailed table listing the
various drugs used to treat multiple myeloma, their doses,
contraindications, interactions, and precautions.
_________________________
Here are some other treatment related resources:
A somewhat more technical discussion can be found in this article by
Harousseau, et al., from France, who reviewed treatment of multiple
myeloma in 2004:
Harousseau JL, Shaughnessy J Jr, Richardson P. Multiple myeloma.
Hematology (Am Soc Hematol Educ Program). 2004;:237-56. Review.
The free full text article can be found here:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15561686&query_hl=2
A more recent review article looking forward at treatment options
coming through the development pipeline was contributed by Child, et
al. from the UK:
Child JA, Russell N, Sonneveld P, Schey S, Future directions in
multiple myeloma treatment.
Acta Haematol. 2005;114 Suppl 1:8-13. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16166766&query_hl=2
The full text is unfortunately unavailable online, however, you can
request a copy if you're interested from Dr. Child:
jachild@doctors.org.uk
The National Institutes of Health has a great page of resources at all
levels from patient to professional, covering conventional therapies,
alternative options, research, and basic definitions of terms:
http://www.nlm.nih.gov/medlineplus/multiplemyeloma.html
___________
Another exciting therapy is combination thalidomide and prednisone
(known as Thal-Dex). Here's a summary:
"Thalidomide is a drug that was originally developed as a sedative and
banned because it caused birth defects, but it is now being used to
treat myeloma. When combined with dexamethasone, about 70% of patients
have a partial or complete disappearance of their myeloma, but this
disappearance may be temporary. Thalidomide has major side effects.
These include severe constipation, numbness and tingling of
extremities, and fatigue and sleepiness. Except for the sleepiness,
symptoms become worse the longer the drug is given. New drugs that are
similar to thalidomide but with fewer side effects have been developed
and are making their way into the clinic."
You can find a very up to date (last updated 9/20/05) listing of
medications at various stages of clinical trials through FDA approval
from the International Myeloma Foundation:
http://www.myeloma.org/main.jsp?source=link&source_link_id=819&type=article&tab_id=8&menu_id=0&id=735
http://www.myeloma.org/main.jsp?type=article&tab_id=1&menu_id=0&id=1025
http://www.myeloma.org/main.jsp?source=link&source_link_id=728&type=article&tab_id=4&menu_id=0&id=1541
You may also find interesting this IMF concise review of the treatment
of multiple myeloma, in PDF format:
http://www.myeloma.org/main.jsp?source=link&source_link_id=776&type=article&tab_id=8&menu_id=0&id=941
The IMF also has a treatment decision tool that helps patients decide
on various treatment options:
https://www.cancerprofiler.nexcura.com/Secure/InterfaceSecure.asp?CB=307
Here is a similar treatment decision tool from the University of Pennsylvania:
http://www.oncolink.upenn.edu/treatment/article.cfm?c=7&s=78&id=235
================================================================================
========
Prognosis
========
The prognosis for patients with multiple myeloma has traditionally
been bleak. The eMedicine article cited above discusses prognosis as
well. As the author states, there have been many methods put together
to try to predict how various patients will fare. The one in current
favor uses the blood levels of C-reactive protein (CRP) and beta-2
microglobulin (a sub-component of a normal immunoglobulin or antibody
that's made in excess amounts in MM):
" * Many schemata have been published to aid in determining the
prognosis of patients with multiple myeloma. One schema uses
C-reactive protein and beta-2 microglobulin.
o If levels of both are less than 6 mg/L, the median
survival is 54 months.
o If the level of only one component is less than 6 mg/L,
the median survival is 27 months.
o If levels of both values are greater than 6 mg/L, the
median survival is 6 months.
* Renal impairment (ie, stage B disease or creatinine level >2
mg/dL at diagnosis) is indicative of a poor outcome.
* The prognosis for survival in unselected patients with multiple
myeloma is 3 years (ie, median survival)."
The last line means that if you looked at all patients who have
multiple myeloma, regardless of their CRP and beta-2 microblobulin
levels, half would live less than 3 years and half would live longer.
The Cleveland Clinic has this to say:
"Smoldering multiple myeloma is generally defined as greater than 10%
plasma cells in the marrow and an M serum protein of greater than
3g/dL; however, serum creatinine and calcium levels are normal."
http://www.clevelandclinicmeded.com/diseasemanagement/hematology/multmyelo/multmyelo.htm
Perhaps the best summary of prognosis and staging can be found in this
eMedicine article (not the same as the one above), written by Dr.
Steven Sorenson from the Radiology Department at La Jolla Radiology
and Scripps Memorial Hospital:
http://www.emedicine.com/radio/topic460.htm
From this article and your description, I agree that you are likely
describing Stage III disease. The article describes prognosis:
"In constructing this staging system, researchers found that stage I
patients had a median survival of 191 months, stage II patients
survived from 11-54 months, and stage III patients survived from 5-34
months."
The author goes on to state that "[w]ithout treatment, most patients
die in less than 1 year; with treatment, life expectancy may be
extended 2-3 years."
This, of course, assumes the current treatment regimens, which are
changing rapidly, giving more hope than these numbers would imply.
==================
Other useful resources
==================
The International Myeloma Foundation
http://www.myeloma.org/
Multiple myeloma clinical trials (continuously updated):
http://www.clinicaltrials.gov/ct/screen/BrowseAny?path=%2Fbrowse%2Fby-condition%2Fhier%2FBC04.b%2FD009101%2BMultiple%2BMyeloma.k&recruiting=true
You can also click on the "Get Map of Locations" button to see where
studies are concentrated.
The Multiple Myeloma Research Foundation
http://www.multiplemyeloma.org/
Multiple Myeloma overview from the Cleveland Clinic
http://www.clevelandclinicmeded.com/diseasemanagement/hematology/multmyelo/multmyelo.htm
Wikipedia page give some interesting trivia about the disease,
including famous people who have had it:
http://en.wikipedia.org/wiki/Multiple_myeloma
================================================================================
I hope this information is useful. I wish you the best in this
difficult time. Please feel free to request any clarification prior
to rating.
Best,
-welte-ga |
,
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