Diagnosis: Brain Stem Glioma (BSG) November 1991
Born: 8/29/1958 Died: 2/23/2005
******** Stephen's Obituary *******
MILOSCIA, STEPHEN - MILOSCIA, STEPHEN(Mr. Miloscia wrote this obituary prior to his death) Stephen Miloscia, 46, years ago, on August 29, 1958. I was born in the So. Bronx at St. Francis Hospital (no longer in existence). I was baptized at my parents' childhood and marital parish (SS Peter & Paul) by Fr. O'Neill. My godparents were Aunt Angie (dad's sister) and Uncle Jimmy (Vincent) mom's brother. I attended St. Anthony's on 239th St. till 6th grade and then transferred to Mt. St. Michael for 7th and 8th grades and continued through four years of H.S. As a youngster, I enjoyed playing chess, was in little league for six years (dad coached some years); was on track team in H.S. (hurdles a favorite). My father and I were rivals at Mount/Hayes football Thanksgiving games, sitting in our respective sections during game. I attended Fordham College majoring in economics and political science. After graduating, I landed a job with Citibank as bank trader for 10 years when suddenly I was diagnosed with an inoperable brain tumor on the brainstem in Nov. '91, which ended my career and somewhat my life. I now leave my beloved parents: Mary and Vito (Sonny) in addition to my dear children: Michael (24) and Stephanie (15) (their mother, Margaret Miloscia); my caring sisters: Donna Gore and Vicki (Scott) Meier; my nephew and nieces: Tim (10) and Kristin (8) Gore, Chelsea (7), Jenna (5) and Kimberly (3) Meier, whom I adored, together with Brian (godson) and Megan; my fond aunts and uncles: Bella Miloscia, Angie and Murray Schirtzer and Jimmy and Pat Santilli, my dear fun cousins: Suzy Schirtzer, Jim (Charlene) Santilli, Rosanne (Mario) Zaltzman and Michael Schirtzer (godson). I am finally at peace and am joining my beautiful grandparents: Nani (Maria Santilli) and grandma/grandpa (Anna and Nicholas Miloscia). My request is to have a one-day closed casket wake with Funeral Mass and cremation. In lieu of flowers, I would ask that you send your gift to T.H.E. Brain Trust, 186 Hampshire St., 2nd Fl., Cambridge, MA 02139-1320 or to Hospice of Rockland, 11 Stockum Lane, New city, NY 10956. Visiting Sunday 2-4 and 7-9 pm. Mass Monday, 11 am, Sacred Heart Church, Suffern, NY. ASSUMMA-SHANKEY FUNERAL HOME Pearl River (845)735-4849
Published: Saturday, February 26th, 2005
******** Stephen's Survivor Story *******
The first symptom I had was a personality change, according to my wife, about
11 mos. before dx. Then the double vision hit. I couldn't catch a baseball
with my son's little league team. I had problems driving. I had balance
problems. Then I started dragging my foot. I only got headaches when I
sneezed - instant headaches. I would take 2 tylenols and headache would be
gone in 15 min. I even "joked" that I probably had a brain tumor. Speech
started to slur, handwriting got worse than it already was.
Leg tremors when I stretched in bed. Eventually couldn't lift the
fork to my mouth. I couldn't even hold up a newspaper to read. Tremendous
neck pain and eyeball pain. Went to a chiropractor who wouldn't even treat me
because of all my symptoms. He referred me to a neurologist. By then, I knew
it was either a brain tumor or multiple sclerosis.
Symptoms are very similar.
I was diagnosed with BSG 11/91 - inoperable. After seeing many drs.
on East Coast, all suggested radiation - a few suggested rad. w/chemo. Since
I lived in NJ at the time (now in NY), I saw all the NY hospitals as well.
Since this is a child's disease mostly, I was told chemo was ineffective for
this type of tumor (in the pons area). So I chose Dr. Lisa Deangelis
(neuro-oncologist) at Sloan Memorial in NY for my radiation. I had fractional
radiation (2x/day) for 36 visits for a total of 7200 rads. She also started
me off w/16 mg./day dexamethasone. I was on dex for 18 mths. It took this
long because whenever I was weaned down, symptoms would develop again. So
steroids would be increased. I was miserable on steroids. I gained about 40
lbs from my original 160. Moon Face and stomach bloated. I was constipated
terribly first 2 months. I would only sleep about 2 hrs. per night, then nap
during the day. I still had enough energy to paint and clean at 3am.
I was very angry and noise would set me off easily. My daughter was
2 y.o. then. She cried all the time. I used to scream all the time. I had
"roid rage". I screamed, I threw things, even got physical (pushing ) with my
wife. This ugly period in my life contributed greatly to the demise of my
marriage. I separated almost a year ago after 17 yrs. of marriage. I'm back
home living with my parents again at age 40.
The steroids left stretch marks (called stria) all across the bottom
of my belly about 6 inches long. Very ugly. Steroids also damaged the blood
flow to my hips. Had to have both hips replaced in Feb. '97. Hips were very
painful prior to operation. Now I'm pain free.
I also developed thrush while on steroids. That's a bacteria that
leaves your tongue kind of furry. Antibiotics clears it up. It came back a
few times and after steroids, no recurrences.
After radiation, tumor shrunk about 10%. Then I went to Dr. Revici
in NYC from May 92 to Jan. 93. He died within the last year I believe at the
age of 101. He was a Hungarian Dr. whose methods were not approved by the
FDA. He created his own liquid medicines from the Table of Elements. He
prescribed lipids such as Ketone, copper, sulfur, magnesium, and selenium,
among other things.
Then in May '93 till Oct. '93, I went to a nutritionist to try and
lose the 40 lbs. I gained from steroids. His name is Dr Schacter in Suffern,
NY. He believes in holistic healing of cancer through supplements. I took
cartilade (shark cartilidge), pycnogenal, hydrazine sulfate, apricot kernels,
laetrile, flax oil, DHEA, vital elixir, marine minerals and other
oxynutrients. At one point, I was taking up to 45 pills per day. I also would
get a Vitamin C drip of 20,000 mg. twice a week.
Tumor is still there - same size but so far harmless. I still have
constant neck pain and back strain, weak bones and muscles. I haven't
returned to work since dx.
I have short-term memory loss and some confusion sometimes,
especially with directions, but other than that, doing pretty good. Annual
MRI's now.
I forgot to mention my prognosis. When I was dxed, I was told I had
2 yrs. to live. That was Nov. 1991.
In April 1999, I have been told I have two tiny new growths in the pons as
well as slight bleeding into the upper area of the pons. I have noticed
balance worsening, and swallowing difficulties. I have developed moderate to
severe hearing loss in my left ear. Dr. doesn't feel necessary to start
treatment yet, but MRIs every 3 months and watch changes and be ready to
start chemo. Probably PCV or BCNU or Thalidomine.
Added: 11/30/2000
Around April 2000, I was having severe weakness and balance problems. I was
falling and bumping into things quite often. I must have fallen and hit my
head about 10 or 12 times over the next 3 months. So it was clear I needed
chemo NOW. This is a first for me. So I decided to start with Temodar. I
decided to go to Beth Israel Hospital in NY since they were using it for the
many children under Dr. Fred Epstein's care. My doctor, Dr. Siffert, is 2
doors down from Dr. Epstein. They had good studies on the drug there. I hope
they could use me as experience to understand the drug better for the kids.
Unfortunately, it's not working as good on children as it is for adults right
now.
Dr.Siffert recommended Temodar for 10 months with MRIs every 2 months.
My doctor also recommended physical therapy to help with my falling. That was
back in May and June 2000. I went twice a week for almost 2 months. I learned
how to catch myself and correct myself from falling. I learned how to climb
up and down stairs. I had a wheelchair ordered for me so somebody could help
me get around. After two months of this, I felt more secure as my weakness
was diminishing as the Temodar started to kick in. I no longer felt the fear
of falling. Although I still had to be very careful. It wouldn't take much to
tip me over.
I took Temodar one tablet a day for 5 straight days and then 23 days
off. First I take the anti-nausea pill, Zofran, an hour prior to the chemo. I
never experienced any side effects like nausea, vomiting, etc. Just the
weakness.
For the first two months, I experienced extreme weakness the fifth and sixth
day each round. I could not hold myself up. My other symtoms were my gait,
speech slurring, swallowing diffuculty, poor handwriting. After the third
round of Temodar I didn't experience the weakness as much. There was a slight
improvement in my speech and swallowing. After 4 rounds, there was noticeable
difference in my speech and swallowing problems. More stability in my
balance. No more weakness. Not falling anymore. One more round of Temodar.
Then the doctor said I should switch to CCNU so as not to build up a
resistance against the Temodar. Just for 2 rounds. That was one pill for one
day every 6 weeks.
Take your Zofran first. Last night I started my second round and again there
were no side effects. During the first round my platelets starting falling,
which is normal, from week 3 to week 6. I had blood checked every three days
to monitor its decline.
Last time I had an Mri done was the end of October. The doctor said it
was a slight reduction. I noticed a lot less white area, but what do I know.
He and I were very happy. Me more than him, of course.
My gait and stability are still a problem however. I am scheduled to
see a neurologist at the end of Jan. 2001 who specializes in movement
disorders. I will keep this page posted.
Added: 9/20/2001
Any how, I continued this way until June 2001 ( 2 months of Temodar then 2 months of CCNU and start over again). Everything was status quo until the last 2 weeks of the last round of CCNU. My platelet count dropped dangerously low enough to warrant two separate platelet transfusions. I guess the accumulation of a year of these drugs was taking its toll on me. So it was a good thing I was ending the program anyhow.
August 22, 2001 - Neurogist visit. MRI shows pretty significant reduction from a year ago. Dr. Siffert and I are VERY pleased. No more treatments and a promotion to 6-month MRIs.
Added: 4/7/2002
Dr. Siffert is no longer my doctor. He went into the private sector to do research for a pharmaceutical company. So I went to Dr. Posner at Sloan-Kettering Hosp. on April 5, 2002. I had my MRI a few days prior. The doctor said all is well. No treatments necessary. If it ain't broke, don't fix it. Annual MRIs. He said (encouragingly) I could go on like this for a long long time. YAY ! That would be OK. Balance problem still with me slightly. Told me to just be careful. Problem when I do an about face walking. Good News, all in all.
Added 10/26/2002
I am currently in the middle of the second month of taking Temodar. I had done Temodar for one year in 2000. I proved highly successful at that time. Hope it is as effective this time. I have been experiencing severe gait and balance problems . My doctor has desribed it as stiffness in the legs. My overall strength is being sapped.
I'm having some problems with my voice also, particularly when it's under stress. It could be worse, I suppose. Staying positive. Will update again
Added 3/5/03
Over the last few months I have been experiencing extreme fatigue and balance and gait problems and some double vision problems. Minor liquid swallowing diffiulties. Was on Temodar from Sep. 02 to Nov. 02 on a lesser dosage. MRI on Dec. 30 showed no significant growth Doc recommended a pet scan. two weeks later scan revealed hyperactivity .Then doctor said stop.temodar. Try something else. So we decided to try VP-16(known as etoposide or vespid). I started yesterday. No side effects. I also started taking Baclofen to help relax the muscles. will also start physical therapy.
Added 6/13/2003
My tumor again has not shown any growth on the MRI. Yet I am still unstable and weak. I am a touch better than 3 months ago as I Am about to complete my 3rd round of chemotherapy ( VP-16). Lots of fatigue but not as extreme as before. I have fallen three times this week alone . Dr. blames long-term effects of radiation from twelve years ago. Wants me to stay on this chemo for a total of 8-12 months if I can tolerate it. Will post update if I'm still here.
Added 12/3/2003
VP-16 stopped after 3rd cycle. Deficits getting worse by the week. Local oncologist felt this was all due to rads effects since MRIs taken in May, July & Oct. all show "stable". Previous neurologist felt rads effects was a good cause of problems I was having;i.e., my overall strength lessened, my ability to walk with a walker came almost to a standstill, sometimes requiring wheelchair only; my speech is slurred most of time, more so when I'm tired; finger tips have difficult time holding anything; left side foot dragging and arm/hand not capable of holding anything. After seeing myself go downhill very quickly, we discussed with my present neurologist about hyperbaric oxygen therapy and it was suggested that I try it. Presently, this is my 3rd day of completing hyperbaric oxygen treatment and I have at least 27 more to do. Hope my next update is upbeat!
