Binghamton, NY; firstname.lastname@example.org
1947 / Class of '92 / Type: IgA / Using
alternative medicine / Last Update: 2/01
Born in 1947, I grew up in small towns surrounded by agriculture. In 1962, we moved
to a town ca. 30 miles downwind of Three Mile Island. However, I left for
college in 1965 and have only been back intermittently or for visits. I have a
BA and MA in German and spent 2 years in Germany. I also have an MLS and, since
1979, have worked as a librarian at Binghamton University. Our area, by the way,
has 3 superfund sites and a major area employer emitted dioxin for years.
Pre-Myeloma health history
Age 0 - 9 (1947-1956): Lots of bronchitis, tonsillitis as a child, doctors
concerned about "pre‑ asthmatic condition"; skin allergy to
wool; all the usual childhood illnesses (measles, mumps, chicken pox). All the
usual vaccinations. Severe middle ear infection at age 8. Health improved
greatly after several weeks at the seashore!
Age 20 (1967): Hay fever begins. Seasonal allergies remain; sensitivity to
certain trees and grasses.
Age 25 (1972): Anxiety attacks begin; treatment with Valium; 2 days
hospitalization. Condition peaked in mid-seventies, subsided during the
eighties. No panic attacks since ca. 1990. In my twenties, also began to develop
some arthritis in my hips.
Age 32-42 (1979-1989): Several bouts of severe pain, right side of abdomen;
endometriosis diagnosed. Two rounds of surgery (1981 and 1989) to remove scar
Age 43 (1990): Develop incidences of severe eye pain upon awakening;
ophthalmologist had no explanation. TMJ also begins at this time. Both continue
to date, but are not constant.
Age 44 (1991): Fractured left wrist in auto accident; wore brace for several
weeks. Severe strain of left ankle
due to fall on icy walk; wore brace for several weeks
Age 45 (1992): Sinus surgery (repair of deviated septum, excision of excess
turbinate tissue). Discovery of anemia and subsequent diagnosis of IgA Multiple Myeloma.
Laboratory values at diagnosis were the following:
WBC=37; RBC=3.2; HGB=11.1; HCT=33.1; MCV=101.9; MCH=34.6; MCHC=33.9; PLT=333; IGA=1440;
Beta 2 Microglobulin=1.5
Bone marrow aspirate showed abnormal, enlarged plasma cells (ca. 27%)
No evidence of urinary monoclonal light chains; skeletal survey showed no evidence
of lytic or blast bone process.
I am working with an oncologist who is affiliated with a regional cancer center
based at Lourdes Hospital here in Binghamton.
Post-diagnosis health history and conventional treatment
From 1992-1997, I undertook no treatment, since the disease seemed to be progressing
very slowly. I saw the oncologist every 2 months. Anemia was the only presenting
symptom. My IgA fluctuated up and down, but we could see that the “ups” were
more considerable than the “downs”.
In 1995 a DEXA scan showed that my bones were in great shape; in fact, they were
unusually dense for my age – denser than the control group of 31-yr-olds!
However,in Fall 1997 I experienced a compression fracture of T8 and in December began
monthly Aredia infusions, 90mg in 500ml saline over 2 hours. My hemoglobin had
also declined steadily and in January 1998 I began Procrit injections. After
adding supplemental iron to my diet, I did see an increase in HgB.
Then, in Fall 1998, I fractured my left clavicle. (Ouch!) And – my IgA had risen to
So, in November 1998 I began biweekly pulses of high-dose Dexamethasone – 40mg per
day for 4 days followed by 10 days “off”. I tolerated the Dex well, with the
main noticeable side effects being the insomnia, very dry skin, hair turning
curly (!) and, interestingly, a psychological state of intense focus and
concentration. I continued this therapy, with a few “breaks” for travel,
until September 2000 when my oncologist decided that the long-term side effects
of the Dex were simply too risky. In spring 2000 my Procrit doses became
erratic, since my HMO had decided to only fund them when HgB dipped below 10. I
stopped the Procrit altogether in Fall 2000.
In October 2000 I began Thalomid at 50mg and increased to 100mg in February 2001.
We saw an almost immediate improvement in HgB, up to 11.7. From January 2001 to
February 2001, IgA dropped 500 points to 2210. So far, I have tolerated it well.
Oh yes, we did another DEXA scan in Fall 2000 to see if the Dex therapy had
compromised femurs and/or hips. Well, my bones are still unusually dense
and still denser than the control group!!
In February '95, I began working with a biochemist who specialized in nutrition. I
followed a regimen emphasizing complex carbohydrates and specific fresh whole
foods (citrus and carrot juices; red cabbage, red peppers, daikon radish,
soybeans, strawberries, grapes, asparagus, other cruciferous veg's and also fish
on a limited basis); I also took daily doses of Essiac with tinctures of
licorice root, red clover and astragalus. Occasionally
we "pulsed" other herbs or tablets, e.g. cats claw, bupleurum,
By 1998 I had gained ca. 40 lbs on this diet and was craving carbohydrates. My
family has a history of Type II diabetes. So – we changed my diet radically to
be severely carbohydrate restricted! The biochemist had also done research that
indicated that Interleukin-6, a major growth factor for mm, was stimulated by
insulin -- so any diet that results in lowered insulin secretion should benefit
mm. Also, since elevated blood sugar often develops during steroid therapy, the
low carbo diet made sense.
In 2000, I changed nutritional advisors to work with someone who specializes in
treating cancer. We are continuing the low-carbohydrate diet and I am also doing
the following supplements: AHCC (an extract of mushroom mycelium), Alpha-Lipoic
acid, Anthocyanins, Beta-Sitosterol, Bromelain, Calcium Orotate, Campesterol,
Catechins, Coenzyme Q10, Folic Acid, Ipriflavone, Iron, Lipoic acid, Magnesium,
N-Acetyl-L-Cysteine, Niacin, Potassium, Quercitin, Selenium, Stigmasterol,
Turmeric, Vitamin A, Vitamin B-12, Vitamin C, Vitamin E, Vitamin K-1, Zinc.
It would be difficult to say of these treatments have “helped”, since I have
also been doing the conventional treatment as well. However, my oncologist seems
to feel that these probably accounted for the “slow” progression of the disease for the
first 5 years. He also feels that they contributed to my tolerance of both the Dex
It’s been a strange 8 years… My initial oncologist at diagnosis in November '92
recommended an immediate allogeneic bone marrow transplant and predicted that
without treatment, I'd be dead in 5 to 7 years! My 4 siblings were all tested --
no matches. Then my HMO refused to even consider BMT as a treatment option and
would not authorize a consultation at Arkansas. After engaging a lawyer, they
reluctantly agreed to fund a BMT at Upstate Medical Center in Syracuse when the
time came. In February '93, I became uncomfortable with the extremely aggressive
approach of the first doctor and so switched to my present oncologist.
One major attitude change I made was to try to see my mm as chronic, as something
that could be managed. It is common to see cancer as something alien which has
invaded us from the outside, like a supergerm, and so we seek to eradicate it,
with therapies which may do more harm than good in the long run. Cancer is the
body’s own system gone awry and I feel that a gentler approach, trying to
understand it and using therapies designed to bring the organism back into
balance has worked for me. Incidentally, both the nutritionists and the
oncologist feel that keeping the IgA in the 2000 range and the HgB close to
normal is acceptable.
I had always been somewhat “anti-drug” and took an occasional analgesic
when necessary. Many of the conventional treatments for cancer are so
drastic. So, it was natural for me to explore the world of
My interest intensified and in 1997 I began to formally study herbalism. I am in
the process of completing an intensive course of study developed by Tieraona Low
Dog, an herbalist/MD in New Mexico.
Then in 1999 I enrolled in Goddard College’s Health Arts and Sciences program,
working toward an MA. I have increasingly become interested in the non-physical
aspects of illness and in the difference between healing and curing. As of this
writing, I am now working on an MA thesis, focusing on the recovery of a sense
of self and identity as an integral aspect of healing.
I also work with a psychologist and participate in a Zen meditation group. To keep
as mobile as possible, I do a workout 3 times a week that consists of gentle
weight training and either treadmill or recumbent bike. I am also an avid
English Country dancer – and have begun to play the flute again. Music had
always been an important part of my life and was something that I had “drifted
away from”. Rediscovering it has been a part of reconnecting with my
Philosophically, cancer has been a challenge to my own beliefs, best described as vaguely
Buddhist (Zen) in nature. To the question "Why me?" I had to work hard
to accept the answer of "Why not?" I've tried to accept the mm as a
part of me that I work *with* and *around*. I am also very conscious of the fact
that, in a way, I am privileged to have the luxury of time -- if my disease were
acute, my "philosophy of acceptance" mode might just vanish. I am
truly humbled by fellow MM'ers and other "cancer
Mortality has indeed become very real, but so has my belief in the totality of all being,
in reincarnation and the opportunity to learn new lessons "each time
around". It is interesting that Myeloma is located in the very core (i.e.
marrow!) of our beings -- maybe the lesson this time around, for me, at least,
is to be true to my inner self and follow my own path.