CANCER GUIDE CONSULTATIONS
- CASE HISTORIES

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Jeff Roth

Jeff Roth was 28 when diagnosed with glioblastoma multiforme stage 4
brain tumor, the most aggressive brain tumor with an average survival
of six to twelve months. Diagnosed July 1999.

I worked a great deal with his father, Dennis, who coordinated Jeff's
conventional and complementary care. Father and son had (and have) an
excellent loving relationship, and while Jeff definitely followed
Dennis's lead, Jeff has made independent decisions about what he did
and did not wish to pursue.

I met with Dennis in August 1999. Jeff had had surgery weeks earlier
at Columbia-Presbyterian in NYC to remove the tumor, which was
located in the left occipital lobe. He subsequently underwent
external beam radiation treatments to the whole head, a total of 6000
rads. MRIs showed some residual tumor post-surgery, common for BT
surgery. After surgery and radiation, Jeff suffered from an
impairment of right-sided peripheral vision in both eyes, as well as
significant cognitive deficits. The deficits included severely
impaired short-term memory, the capacity to focus and concentrate,
and aphasia. Neuropsychiatric evaluation confirmed a host of
cognitive and learning impairments.

When I first met with Dennis to consult on Jeff's case, I laid out a
chart of levels of care, which I refer to as multi-tracking:
conventional anti-tumor strategies, alternative anti-tumor
strategies, complementary anti-tumor and host-defense building
strategies. I explained that Dennis and Jeff could choose a primary
anti-tumor strategy and then a whole range of complementary anti-
tumor and host-building strategies all at the same time. The only
significant conflicts might be between a mainstream anti-tumor
strategy (i.e., chemotherapy) and an alternative anti-tumor system
(i.e., Gonzalez metabolic, Burzynksi). We would also take care not to
include any complementary treatments that might conflict with
conventional treatments. Later, we developed a whole additional
track: conventional off-label drugs that could be used together with
Jeff's other treatments.

In this vein, I recommended a series of steps:

1)Choose a top-flight neuro-oncologist to recommend chemotherapeutic
or, if available, biologic therapies. See whether these treatments
offer sufficient chance of response when comparing with alternative
or other systems. I recommend Dr. Henry Friedman at Duke, who Dennis
has heard of, and who I have found to be one of the most creative and
aggressive neuro-oncologists for brain tumors. I also mentioned the
drug Temozolomide (Temodol), which I had been familiar with from
previous case, as a new agent with high therapeutic index: relatively
good efficacy for BTs with low toxicity: taken orally with minimal
side effects. I also mention the clincial potential of Tamoxifen for
BTs.

2)Get a second opinion on whether further surgery is plausible and
worth considering. I recommend Dr. Fred Epstein of Beth Israel
Medical Center in NYC, a leading neurosurgeon who also embraces
complementary care.

2)Investigate alternative approaches for BTs: I mention Burzynski and
discuss his limited but promising data, as well as Nick Gonzalez's
metabolic approach. While not recommending treatment (I never do) I
suggest that we both compare data on chemotherapy with data on
Burzynski. My first read on this comparison is that Burzynski data is
rather preliminary, somewhat limited in scope, but intriguing, and
that much more data from ongoing FDA-supported clinical trials may be
needed to have a clearer sense of efficacy of antineoplastons in
aggressive BTs. Gonzalez does not have data on BTs, but claims some
therapeutic success.

3)Find a physician or specialist to coordinate complementary care.
For someone in Jeff's situation, I recommend extensive and
comprehensive complementary therapies which require the best possible
oversight, both to be certain to get state-of-the-art approaches and
to prevent negative interactions, either nutrient-nutrient, nutrient-
herb, herb-herb, herb-drug, or nutrient-drug conflicts. As I often
do, I recommend Keith Block, M.D. and his Block Medical Center in
Evanston, Illinois, as the best complementary cancer physician. I
discuss some of Block's approaches that I find promising: very low-
fat diet with high vegetable, fruit, and grain intake, high intake of
Omega-3 fatty acids, and supplements: soy isoflavones, flavonoids,
antioxidants, amino acids, vitamins/minerals, a range of anti-tumor
botanicals (curcumin, milk thistle, astragulus, many more), mushroom
polysaccharides, alkylglycerols, etc.

4)I suggest that he also enlist the services of Mark Renneker, M.D.,
who does research on conventional and complementary cancer treatments
for patients. Renneker often works with Block and he has an excellent
track record of coming up with new approaches.

5)I refer Jeff to a psychotherapist, Dr. Ruth Bolletino of NYC, who
treats cancer patients with an existential and mind-body approach,
following closely the philosophy and approach of Lawrence LeShan, who
trained her in cancer psychotherapy. Emphasis on cancer as a
turnining point, meaning, purpose, psychological and spiritual self-
realization.

Dennis brings this plan to Jeff and they pursue every one of these
approaches aggressively. Dr. Epstein does not recommend surgery at
this time; may be worthwhile when/if Jeff has a recurrence. They
decide to have Dr. Friedman coordinate conventional oncologic care:
he recommends an aggressive multi-modal chemotherapy treatment plan
including several months of Temodol, followed by several months of
CCNU, then CPT-11 (Irinotecan), then one last round of Temodol.
Through Fred Epstein, Jeff finds a New York oncologist, Dr. Joao
Siffert of Beth Israel Hospital in New York, who will work with Dr.
Friedman and implement this unusual chemotherapy protocol. Jeff
proceeds with this course, receiving his chemotherapy treatments at
Beth Israel. After slightly over one year of these shifting
treatments he is put on Tamoxifen.

With my assistance, and that of Keith Block and Mark Renneker, Dennis
also pursues information on Gamma Knife radiotherapy, dendritic cell
vaccines, off-label drugs, signal transduction inhibitors such as
Gleevec, and other approaches. While many suggestions are put on the
back burner (gamma knife, dendritic cell vaccines, Gleevec,
Burzynski), Dennis and Jeff make contact with many specialists and it
gives them both a greater sense that should Jeff's tumor recur, they
would have potentially effective options This is a critical process
for father and son (and the rest of the family), helping them sustain
hope and a sense of control.

Since mid-1999, Keith Block coordinates Jeff's complementary care and
provides much needed consultation on his conventional options. Block
puts Jeff on his low-fat diet (only animal product allowed is cold-
water fish rich in omega-3s) and extensive supplementation as
described above. Dennis also learned about the work of Jeanne
Wallace, Ph.D., then of Santa Cruz, CA, who has developed an
extensive nutritional intervention for brain tumor patients and has
documented success in a "best case" series. Dennis consulted with
Jeanne and worked out coordination between her and Dr. Block to
arrive at the most efficacious diet/nutritional intervention program.
The Block and Wallace programs largely overlap, but Wallace added
several new agents: hypericin, berberine,and bromelain, among some
other adjustments. Wallace also recommended a copper reduction
regimen, starting with zinc piccolinate, later continued with an
agent, tetrathiomolybdate (TM). (Copper reduction has been associated
with anti-angiogenic activity).

They also consulted Susan Silberstein, an educator and CancerGuide
from Philadelphia who recommended a Chinese herbal combination, as
well as a Chinese herbologist, George Wong of NYC, who gave them a
combination tea for antitumor activity and side-effect reduction.
Jeff has trouble tolerating Wong's tea. Jeanne Wallace also provided
supplements (antioxidants, herbs, and amino acids such as glutamine,
etc.) specifically geared to reduce chemotherapy side effects. Jeff
experienced relatively few side effects from chemotherapy: he
tolerated Temodol very well, and had absolutely no diarrhea on CPT-
11, which usually causes very severe diarrhea. His CBCs were
generally very good; no marked neutropenia or other cytopenias except
when he was on CCNU. After his first CCNU treatment, his white blood
cell count and platelets dropped markedly. Nupogen (G-CSF) was
unsuccessful in raising his counts sufficiently to re-commence with
chemotherapy. Jeff and Dennis decided to use the herbal chemo-support
product recommended by Silberstein, as well as a Chinese herbal
product called Nuturin that Dennis had discovered. Before using, they
had these two formulas evaluated by four Chinese herbalists including
Efram Korngold, all of whom approved. Three days later Jeff's WBC
increased by 73% and his platelets rose comparably. Dennis recalls
the physicians at Beth Israel asking, "What did you give him??" One
week later, he commenced with CCNU again. Jeff continued taking the
Chinese herbal support and had no further cytopenias. During the
entire year of chemotherapy, Jeff vomited only twice.

Jeff's primary team leaders are now Block, Renneker, and Wallace for
complementary care, and Friedman for medical oncology, with my
ongoing assistance.

I found preclinical evidence that the Cox-2 inhibitor Celebrex might
be useful for brain tumors, and Dennis and Jeff consulted
their "team" who concurred. Jeff now takes Celebrex 200 mg 2x per
day. Based on suggestion from Renneker and Block, Dennis and Jeff
have also consulted Dr. Bernard Bihari of NYC who has used
naltrexone, an immune modulator, with some success with cancer
patients, including BT patients. Jeff has taken naltrexone since mid
2000.

Jeff began therapy with Ruth Bolletino and has continued with her
ever since; both patient and therapist report excellent progress.
Jeff and Dennis have pursued many other mind-body spirit approaches:
he went to a Reiki master I recommended, Pamela Miles, and did sound
healing with oncologist Mitchell Gaynor, another recommendation. He
practiced prayer; guided imagery; varieties of spiritual healing;
energy healing with Ron Young in New York; acupuncture; acupressure;
qi gong; Tibetan herbs (through a consult with Yeshi Donden, the
Dalai Lama's physician); regional physical therapy (RPT); lymph
drainage by a massage therapist; and the application of essential
oils to the surgical scar on the back of his head by a highly
regarded Chinese aromatherapist, Jeffrey Yuen. Some of Jeff's most
powerful healing experiences occurred during meetings with a mystic
Chasidic Rabbi from Paris, whose family had practiced spiritual
healing for six centuries. Jeff sees him whenever he comes to the
States, usually four times a year.

Jeff has continued to have regular MRIs at 3 month intervals; he has
also had SPECT and other imaging technologies to refine diagnostic
information. Since June 1999, Jeff's MRIs have shown a focal area of
residual tumor that may or may not be partially or entirely necrotic.
There has been no evidence of progression whatsoever; one most recent
scan arguably demonstrated a small degree of reduction. Two recent
SPECT scans were both "cold" meaning no active tumor growth and no
evidence of angiogenesis, or tumor blood vessel growth.

Jeff's health has generally been excellent and he and his father have
aggressively pursued approaches to improve cognitive functions. Jeff
enrolled in a cognitive rehab educational program, and he consulted
with Dr. Paul Harch of New Orleans, a specialist on hyperbaric oxygen
(HBO). Jeff has had 40 HBO treatments and his cognitive improvements
have been significant: his speech has dramatically improved and his
short-term memory has also showed approximately nearly 90%
improvement. In the past month, Dennis reports even more dramatic
improvement: Jeff has returned to a fuller work schedule as his
focus, concentration, and comprehension have gotten markedly better.
The director of the school Jeff attends for cognitive rehabilitation
called his father to say that he'd never seen a student improve so
dramatically. Jeff and Dennis both feel that the HBO treatments
played the most significant role in this recovery process.

In their effort to remain vigilant, and in the hopes of reducing any
residual tumor and reducing possibility of recurrence, Dennis and
Jeff continue to seek mainstream and complementary therapies. Jeff
completed chemotherapy one year ago, but he now has started a new
round of Temodol and will take it for one week every three months for
the next year, under Dr. Friedman's guidance. (Jeff's tumor had been
analyzed for methylation with a test called MGNT. It was highly
methylated, a sign that Temodol, a nitrosourea, is more likely to be
effective.) He will also begin Iscador treatments this summer, to be
admistered by Dr. John Forster of Philadelphia, and is commencing
with an immune-stimulating Chickenpox virus vaccine protocol used in
NYC by Dr. Raymond Chang, who I recommended to Dennis. When Jeff was
first on Tamoxifen, his copper levels did not fall, despite treatment
with the agent TM; Block found evidence that Tamoxifen was likely
responsible. He was taken off Tamoxifen, but copper levels still did
not reduce sufficiently for any therapeutic (anti-angiogenic) effect.
TM was discontinued and Jeff was put back on Tamoxifen, a protein
kinase C inhibitor with potential efficacy in BTs and relatively few
side effects. He will continue with Tamoxifen while on his Temodol
regimen.

Over time, with particular help from Renneker, Dennis and Jeff have
had samples of his tumor sent for analysis of various genetic markers
and other molecular characteristics that will guide further
experimental therapies, if they are needed. For example, they know
that Jeff's tumor is positive for Epidermal Growth Factor Receptor
(EGFR) expression; has damaged p53 suppressor genes, and expresses an
oncogene called c-kit. Experimental therapies currently in the
developmental pipeline may be right for Jeff given the knowledge they
now possess.

Today, Jeff remains stable and, and in a few months he will celebrate
the three-year mark from initial diagnosis, which for glioblastoma
multiforme is considered remarkable. He remains highly disciplined in
sticking with the Block/Wallace diet and supplements and pursing
psychospiritual healing. Jeff got married in August, 2000, in front
of 350 jubilant family members and friends; I was honored to be
present.