Just for the record. The John Hopkins update as mentioned in the
previous message is a false email that has spread through the
internet. The link below gives more detail.

http://www.snopes.com/medical/disease/cancerupdate.asp

Anna


--- In BrainSurgery@yahoogroups.com, "Patricia Williams"
<trisha4080@...> wrote:
>
> Thank you for posting that info. Very interesting and something I
will
> definitely pay more attention to.
>
>
>
> I hope your girlfriend is doing well and is home and getting that
pH up!
> Thanks so much for your input.
>
>
>
> Take care everybody,
>
> Trisha
>
>
>
> Trisha Williams, R.N.
>
> Brain Tumor Survivor
>
> Braingels Project Inc: A Jewelry Fundraiser
>
> CHECK OUT OUR WEBSITE AT:
>
> <http://www.braingels.photosite.com/>
http://www.braingels.photosite.com
>
> ALL PROFITS donated to 501(c)(3) organizations dedicated to the
support and
> education of brain tumor patients and their families
>
>
>
> _____
>
> From: BrainSurgery@yahoogroups.com
[mailto:BrainSurgery@yahoogroups.com] On
> Behalf Of Imran Pishori
> Sent: Saturday, April 14, 2007 10:04 AM
> To: BrainSurgery@yahoogroups.com
> Subject: [Norton AntiSpam] [BrainSurgery@Yahoo] Cancer update from
John
> Hopkins
>
>
>
> This is very interesting and compliments my previous posts about
diet and PH
> level and oxygen:
>
> CANCER UPDATE from JOHNS HOPKINS
>
> Excellent information to know! (Worth the read).
>
> Perhaps you already know this but I thought it was worthwhile
information.
>
> Cancer Update from Johns Hopkins
>
> 1. Every person has cancer cells in the body. These cancer cells do
not show
> up in the standard tests until they have multiplied to a few
billion. When
> doctors tell cancer patients that there are no more cancer cells in
their
> bodies after treatment, it just means the tests are unable to
detect the
> cancer cells because they have not reached the detectable size.
>
> 2. Cancer cells occur between 6 to more than 10 times in a person's
> lifetime.
>
> 3. When the person's immune system is strong the cancer cells will
be
> destroyed and prevented from multiplying and forming tumors.
>
> 4. When a person has cancer it indicates the person has multiple
nutritional
> deficiencies. These could be due to genetic, environmental, food and
> lifestyle factors.
>
> 5. To overcome the multiple nutritional deficiencies, changing diet
and
> including supplements will strengthen the immune system.
>
> 6. Chemotherapy involves poisoning the rapidly-growing cancer cells
and also
> destroys rapidly-growing healthy cells in the bone marrow, gastro-
intestinal
> tract etc, and can cause organ damage, like liver, kidneys, heart,
lungs
> etc.
>
> 7. Radiation while destroying cancer cells also burns, scars and
damages
> healthy cells, tissues and organs.
>
> 8. Initial treatment with chemotherapy and radiation will often
reduce tumor
> size. However prolonged use of chemotherapy and radiation do not
result in
> more tumor destruction.
>
> 9. When the body has too much toxic burden from chemotherapy and
radiation
> the immune system is either compromised or destroyed, hence the
person can
> succumb to various kinds of infections and complications.
>
> 10. Chemotherapy and radiation can cause cancer cells to mutate and
become
> resistant and difficult to destroy. Surgery can also cause cancer
cells to
> spread to other sites.
>
> 11. An effective way to battle cancer is to starve the cancer cells
by not
> feeding it with the foods it needs to multiply.
>
> CANCER CELLS FEED ON:
>
> a. Sugar is a cancer-feeder. By cutting off sugar it cuts off one
important
> food supply to the cancer cells. Sugar substitutes like NutraSweet,
Equal,
> Spoonful, etc are made with Aspartame and it is harmful. A better
natural
> substitute would be Manuka honey or molasses but only in very small
amounts.
> Table salt has a chemical added to make it white in colour. Better
> alternative is Bragg's aminos or sea salt.
>
> b. Milk causes the body to produce mucus, especially in the
> gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk
and
> substituting with unsweetened soya milk cancer cells are being
starved.
>
> c. Cancer cells thrive in an acid environment. A meat-based diet is
acidic
> and it is best to eat fish, and a little chicken rather than beef
or pork.
> Meat also contains livestock antibiotics, growth hormones and
parasites,
> which are all harmful, especially to people with cancer.
>
> d. A diet made of 80% fresh vegetables and juice, whole grains,
seeds, nuts
> and a little fruits help put the body into an alkaline environment.
About
> 20% can be from cooked food including beans. Fresh vegetable juices
provide
> live enzymes that are easily absorbed and reach down to cellular
levels
> within 15 minutes to nourish and enhance growth of healthy cells.
To obtain
> live enzymes for building healthy cells try and drink fresh
vegetable juice
> (most vegetables including bean sprouts) and eat some raw
vegetables 2 or 3
> times a day. Enzymes are destroyed at temperatures of 104 degrees F
(40
> degrees C).
>
> e. Avoid coffee, tea, and chocolate, which have high caffeine.
Green tea is
> a better alternative and has cancer-fighting properties. Water-best
to drink
> purified water, or filtered, to avoid known toxins and heavy metals
in tap
> water. Distilled water is acidic, avoid it.
>
> 12. Meat protein is difficult to digest and requires a lot of
digestive
> enzymes. Undigested meat remaining in the intestines become
putrefied and
> leads to more toxic buildup.
>
> 13. Cancer cell walls have a tough protein covering. By refraining
from or
> eating less meat it frees more enzymes to attack the protein walls
of cancer
> cells and allows the body's killer cells to destroy the cancer
cells.
>
> 14. Some supplements build up the immune system (IP6, Flor-ssence,
Essiac,
> anti-oxidants, vitamins, minerals, EFAs etc.) to enable the body's
own
> killer cells to destroy cancer cells. Other supplements like
vitamin E are
> known to cause apoptosis, or programmed cell death, the body's
normal method
> of disposing of damaged, unwanted, or unneeded cells.
>
> 15. Cancer is a disease of the mind, body, and spirit. A proactive
and
> positive spirit will help the cancer warrior be a survivor. Anger,
> unforgiveness and bitterness put the body into a stressful and
acidic
> environment. Learn to have a loving and forgiving spirit. Learn to
relax and
> enjoy life.
>
> 16. Cancer cells cannot thrive in an oxygenated environment.
Exercising
> daily and deep breathing help to get more oxygen down to the
cellular level.
> Oxygen therapy is another means employed to destroy cancer cells.
>
> CANCER UPDATE FROM JOHN HOPKINS HOSPITAL, U S - PLEASE READ
>
> 1. No plastic containers in micro.
>
> 2. No water bottles in freezer.
>
> 3. No plastic wrap in microwave.
>
> Johns Hopkins has recently sent this out in its newsletters. This
> information is being circulated at Walter Reed Army Medical Center
as well.
> Dioxin chemicals cause cancer, especially breast cancer. Dioxins
are highly
> poisonous to the cells of our bodies. Don't freeze your plastic
bottles with
> water in them as this releases dioxins from the plastic.
>
> Recently, Dr. Edward Fujimoto, Wellness Program Manager at Castle
Hospital,
> was on a TV program to explain this health hazard. He talked about
dioxins
> and how bad they are for us. He said that we should not be heating
our food
> in the microwave using plastic containers.
>
> This especially applies to foods that contain fat.
>
> He said that the combination of fat, high heat, and plastics
releases dioxin
> into the food and ultimately into the cells of the body.
>
> Instead, he recommends using glass, such as Corning Ware, Pyrex or
ceramic
> containers for heating food. You get the same results, only without
the
> dioxin. So such things as TV dinners, instant ramen and soups,
etc., should
> be removed from the container and heated in something else.
>
> Paper isn't bad but you don't know what is in the paper. It's just
safer to
> use tempered glass, Corning Ware, etc. He reminded us that a while
ago some
> of the fast food restaurants moved away from the foam containers to
paper.
> The dioxin problem is one of the reasons.
>
> Also, he pointed out that plastic wrap, such as Saran, is just as
dangerous
> when placed over foods to be cooked in the microwave. As the food
is nuked,
> the high heat causes poisonous toxins to actually melt out of the
plastic
> wrap and drip into the food. Cover food with a paper towel instead.
>
> This is an article that should be sent to anyone important in your
life!!!
>
> _____
>
> From: BrainSurgery@ <mailto:BrainSurgery%40yahoogroups.com>
yahoogroups.com
> [mailto:BrainSurgery@ <mailto:BrainSurgery%40yahoogroups.com>
> yahoogroups.com] On
> Behalf Of anne91547@aol. <mailto:anne91547%40aol.com> com
> Sent: Friday, April 13, 2007 6:17 PM
> To: meningioma@listproc <mailto:meningioma%40listproc.hcf.jhu.edu>
> .hcf.jhu.edu; meningioma@yahoogro <mailto:meningioma%
40yahoogroups.com>
> ups.com;
> BrainSurgery@ <mailto:BrainSurgery%40yahoogroups.com>
yahoogroups.com
> Subject: [BrainSurgery@Yahoo] MNG questions to ask your medical
team from
> Anne Breen
>
> 28 questions to ask and think about
> Sun May 14, 2006 03:23
>
> 28 Questions to ask your medical team, maybe 150 things really, to
think
> about and talk over with your significant others and social worker
over a
> period
> of a few weeks or months. Take your time and go slowly, especially
if your
> symptoms are non-existant or manageable, if it was found
accidentally and is
>
> elective surgery it may not be a medical emergency and you probably
have
> more
> time to plan your future care.
>
> These are questions to ask especially if he/she is recommending
immediate
> surgery or radiation for your meningioma, acoustic neuroma,
vestibular
> schwannoma or any other presumed by MRI diagnosis to be a low-grade
brain
> tumor
> etc.(meningiomas often have [dural tails]a visible attachment to
the middle
> layer
> of the lining of meninges called the dura matter) The post-op
pathology
> report or a surgical biopsy might be more accurate. Initial
misdiagnosis of
> tumor
> type (with 120 types) is a common problem and so are frequent
hospital
> medical errors. You may want to get a second opinion on your
surgical
> pathology
> report from an experienced neuro-pathologist. Many folks have
written to me
> since I first put this list of 28 questions together in 1997
thanking me for
> the
> tip about getting a second opinion of their pathology report by
sending out
> their tumor tissue sample slides to a national bt expert after
their surgery
>
> before choosing any additional treatments.
>
> No one gets or needs answers to all these questions below at their
first
> appointments. Many are things to think about planning ahead with
family and
> loved ones or to discuss with a hospital social worker. Please
bring someone
> you
> trust with you to take notes at all your appointments, no two people
> remember
> all the doctor's words exactly the same way.
>
> Please write down and take a copy of your current medications and
any
> medical drug allergies to give your doctor. It is way too important
to trust
> your
> memory alone on this issue right now.
>
> You can get excellent free additional reading material about brain
tumors
> and/or your planned treatment online from your search engine or at
> _www.google.com_ (http://www.google. <http://www.google.
> <http://www.google.com> com> com) from the
> major nonprofit brain tumor (spelled
> tumour in Oz, UK or Canada) associations for your family to read
and share
> together at their own pace. Click on _www.braintumor.org_
> (http://www.braintum <http://www.braintum
<http://www.braintumor.org>
> or.org> or.org) to meet other bt
> survivors and caregivers
>
> Click on _http://www.virtualt <http://www.virtualt
> <http://www.virtualtrials.com_> rials.com_> rials.com_
> (http://www.virtualt <http://www.virtualt
<http://www.virtualtrials.com/>
> rials.com/> rials.com/) to
> see the list of brain tumor centers that give free consultations
and second
> opinions marked with a red star, and scroll down to the very bottom
of the
> first page. There is a list of fine brain tumor doctors there too.
Please
> get
> Nancy Conn Levin and Lori Levy's excellent meningioma brochures (
they are
> both
> meningioma survivors) and other meningioma resources online from
the Brain
> Science Foundation website and Dr Paul Zelter has two new brain
tumor
> treatment
> plan books and Dr Peter Black and Dr Steven Brem have new books too.
>
> 1. What specific operational approach, medications or procedure are
you
> recommending for my condition? a.If it was your son or daughter
what would
> you
> do? b.Who would you recommend I go to for a second opinion? (BE
SURE to get
> another opinion if you are not satisfied with your doctor and your
symptoms
> are
> still manageable. Perhaps two or more if you want, many like to
triangulate,
>
> three opinions can be the magic number, if two agree. This is YOUR
brain,
> YOU
> AND YOUR LOVED ONES all want to be satisfied with YOUR OWN doctor.
>
> 2. Ask what kind of equipment do you use? Do you have MRI and
computer
> guided treatment equipment? How old is your equipment and the
radiation
> element?
> Can you explain how much radiation my healthy brain will get on the
way in
> to
> the tumor? What are hot spots? How skilled and experienced is the
staff?
> (There are several different types of radiation, FSR, IMRT and MANY
> different
> brand names of brain radiation machines like Gamma knife, Electra
knife,
> Peacock, the Linac Accelerator, Proton Beam, Cyberknife, Novalis,
etc.) They
> count
> dose units called rads and greys, GK is generally one time direct
shots,
> IMRT
> and IGRT is generally given over five weeks, most others are
somewhere in
> between.
>
> 3. Can I have free copies of my printed MRI report, surgical
reports and
> pathology report? a. Can I get a free copy or disc of my MRI film?
(You can
> send
> them to other major medical brain tumor centers that have free
evaluations
> and consulting services.) b. Can I get my complete medical records
on a CD?
> c.
> Can I get my post-op patholgy report and send it for a second
opinion to a
> recognized neuropathology specialist before I decide about more
treatment if
>
> needed? (Note: If you ask for personal MRI copies BEFORE the scan
> appointment,
> it maybe easier to get them for free or at a reasonable cost, if
you keep
> your own previous annual MRI films, and records you are always
ready for
> your
> next appointment, they can not say they lost them,and you can learn
to
> compare
> MRIs yourself with your doctor on his light box if you want.
>
> 4.How many different ways of treating my condition and other
craniotomy
> approaches are there for my tumor? a.Will a biopsy be done first?
b.Will
> hormone
> receptor tests be included in the pathology report? c.What other
brain tumor
>
> pathology testing do you do currently do here? d.Why does your
doctor want
> to
> do the operation or procedure one way instead of another? (Note:
There are
> several different ways to gain access inside your skull and tiny
endoscopic
> tools through the nose, eyebrow and skull attached equipment(some
with
> screws
> or just face masks) depending on various tumor locations and brand
name
> equipment available. Treatment options and outcomes do vary based
on your
> general
> health, age, tumor location, the hospital treatment equipment
facilities and
>
> the experience and skills of the doctors and their neurology ICU
staff. Just
>
> like buying real estate, location, location, location. How long did
you
> research buying a new house or a car? This is much more important
than
> either of
> those decisions.
>
> 5.Why do you think I need this operation or procedure right now? To
relieve
> my pain? To reduce my symptoms? To improve my body functions? To
diagnose my
>
> condition/problem? To save my life? (One doctor may say you need
surgery
> immediately, another one may say you have a few weeks to fit into
his
> operating
> schedule , maybe 6 months or even a year or more to consider any
future
> treatment if it is small, less than 1 or 2 cms and to see if it
changes or
> grows at
> all in 3-6 months or a year. You can choose what you are going to
be most
> comfortable with based on the medical information you have gathered
and your
>
> own life situation. Please do not let any nice local back and spine
> neurosurgeon, who may be a very sweet guy, but has not done plenty
of brain
> tumor
> removals operate on you or your loved one. Dr Paul Zelter says at
least 50 a
> year,
> that's one a week)
>
> 6.What are the risks/side effects/complications or neurological
deficits
> associated with my condition or this procedure and/or medications?
and
> afterwards? a.Is it written down anywhere for me in printed
materials? b.How
> common
> are these risks/side effects/complications? c.What is the current
location
> and
> size of my tumor? What functions and parts of my brain or spinal
cord may be
>
> injured temporarily or permanently effected by this tumor or this
treatment?
>
> How will you monitor mental and cognitive changes? Can I have a
neuropsych
> evaluation before my treatment as a future baseline indicator?
>
> 7.What are the advantages and benefits of this particular surgery
or
> procedure? a. What is the next most frequently used treatment? Its
> advantages or
> disadvantages to standard treatment? b. How much hair will you
shave? Will I
>
> lose any hair permanently from radiation? What will my followup
care be? c.
> Will
> it include at least annual MRI's for the rest of my life? (I hope
so for
> your own future health security).
>
> 8.How long do you anticipate the surgery or this procedure will
take? How
> long will my family and loved ones have to wait? Where can they
wait? It may
>
> only be a few hours or five weeks depending on treatment type and
possible
> outcomes. Hospitals often have special rates at nearby motels, and
free
> medical
> air flights are available if there is a financial need. The
National Cancer
> Institute has a free brain tumor study treatment program too, so no
one has
> to
> go without treatment if they ask for help.
>
> 9.Is this surgery/procedure considered novel or experimental in any
way?
> a.How many times is it performed in the US each year? b.Is there
good reason
> to
> try something that is not standard surgical care first? (Its your
choice and
>
> decision.)
>
> 10.How many meningioma patients with this specific type or location
of brain
>
> tumor do YOU treat each month? annually? Can I meet or talk to some
of your
> previous bt patients? Are any of your bt patients recovering in the
hospital
>
> today? Can I visit them? a.How does that compare to other
> doctors/facilities/teaching institutions in this area? Regionally?
> Nationally? (maybe 11,000 M's
> were diagnosed annually fairly recently)
> b.What are my priorities now? Cost wise too, should I travel far
away to a
> national major medical center for the most well known doctor or
treatment
> and
> be away from home, family and friends, or is a major regional
medical center
>
> or state university teaching hospital going to have skilled,
competent
> physicians, a good neurology dept and medical team and be more
convenient
> for me
> and my family and closer for follow-up visits in the future? (Your
choice.)
>
> 11.What are YOUR results with this condition and this type of
surgery or
> treatment? (Note:Choose a neurosurgeon, radiologist, neuro-
oncologist or
> oncologist who has plenty of experience with brain tumors, not just
back or
> spine
> surgery. Ask and find out how familiar they and their team are with
their
> newer
> computerized treatments and their new surgical equipment too) Some
folks
> boldly want to be the first experimental case, others prefer a
tried and
> true
> standard procedure. (How about YOU? What do you want to do?)
>
> 12.What kind of anesthesia and pain killers will be used? Is there
a choice?
>
> Is the anesthesiologist's bill included in my insurance plan? How
long will
> I need drugs? What about anti-seizure meds? How long will I need to
take
> them, when can I wean off of them, when do my state laws let me
drive again
> if I
> do have a documented seizure? Some some doctors prefer to give anti-
seizure
> drugs as a precautionary preventive measure. Always check with your
doctor
> before stopping any medications, especially be careful weaning off
or
> changing
> any anti-seizure drugs.
>
> 13.Are there new chemotherapy treatments and NCI clinical trials
available
> that you know of? ( You can see a regular neuro-oncologist to ask
about
> hydroxyurea, tamoxifen, thalidomide, alpha interferon II, Temodol
(temodar)
> Mifeprex
> [mifepristone] for meningioma treatment too, if it is inoperable
(not often
> today) , or if you do not want surgery or radiation right away for
a slow
> growing 2 to 4 mm per year benign brain tumor.
>
> 14.Should I continue to take all my regular medications, including
thyroid
> medicines, hormone replacement therapy? Prempro? What about birth
control?
> Would an oral contraceptive or birth control pill like Ru-486,or
other new
> progesterone receptor modulating compounds help stop my tumor from
growing
> or
> returning? 80% of benign meningiomas have high levels of
progesterone
> receptors.(You need a biopsy or unradiated tumor tissue sample
pathology to
> find out)
> What about Norplant? NO Norplant,it is contraindicated for people
with
> intracranial lesions! NO Hormone replacement therapy, it may also
contribute
> to
> tumor growth. What if I am pregnant? Or want to get pregnant? OR
need extra
> hormones? Some doctors do not advise pregnancy, some young women
have
> successfully had children after meningioma treatment, if this is an
issue
> please visit
> the Meningioma Mammas website (Note:These tumors are often thought
to be
> growth hormone related, some medical researchers say stimulated by
> pregnancy,
> progesterone, estrogen and/or perhaps pre-menopause hormone
fluctuations and
> HRT
> or menopause)
>
> 15.If I don't do anything about this problem, what's likely to
happen? I
> know several m patients who have waited 10 years before they had to
take any
>
> risks of surgery or radiation therapy because it didn't grow and
they had no
>
> serious symptoms. Watch and wait again (WAWA) does not
automatically mean
> whining! It means check with MRI annually, but please make sure
they compare
> it to
> your first one, not just the most recent previous one.
>
> 16.Is one alternative to immediate invasive surgery or radiation
treatment
> "watchful waiting"? What are the risks for me if I choose to watch
and wait
> for a while? What if I really want to wait until I finish school,
or move or
> do
> some other financial planning for my family? What if I just want it
done
> right away to avoid an agonizing wait? (Make the personal decision
you think
> you
> and your family can live with)
>
> 17.How might this surgery or treatment option affect me and my
> family--financially? physically? mentally? and last but not least,
> emotionally? Can I get
> neuropsychological counseling now and later on? Especially later on
for
> cognitive retraining and emotional brain rehabilitation, behavior
and
> personality
> changes, not just physical or occupational therapy.
>
> 18.What is your follow -up plan if this surgery or radiation
treatment does
> NOT work? IS this important to know ahead of time? We really need
to see
> more
> published longterm patient "quality of life" records of their
survivorship,
> not just 2 to 5 years post treatment and not just meaningless
reports that
> say
> they are alive and the tumor didn't grow. We need to know what past
bt
> patients are able to do now and how well they function in daily
living and
> work
> environments much later on. How many doctors continue to see their
former
> patients? How often? Not many, not much. You are lucky if you find
one that
> does,
> you may also need a good neurologist and/or endocrinologist
afterwards if
> your pituitary gland or thyroid was injured.
>
> 19.How much of the cost of this treatment will my
insurance/Medicare cover?
> How much will I have to pay out of pocket? Is the anesthesiologist
> included?(
> Note: You may also have to call your insurance company or HMO for
this
> information, especially if you want to go out-of-network and out of
town.)
>
> 20.What effect will this surgery/procedure have on my other medical
problems
>
> and medications? have someone double check your drugs for
interactions at
> _www.rxlist.com_ (http://www.rxlist. <http://www.rxlist.
> <http://www.rxlist.com> com> com) . How long
> do you think I will be
> hospitalized? In ICU? Do they have a special neuro ICU department
and well
> trained neuro-trauma staff?
>
> 21.What other medical costs or medications will there be after the
surgery
> or this procedure? a. Will I need cognitive therapy? physical
therapy, a
> neurophyscologist and counseling afterwards? b. Will I still need
radiation
> as
> follow-up to a careful, cautious partial surgery (called
debulking)? Who
> will
> pay for my health care if I lose my job and my health insurance?
What if
> they
> think I am lazy or indolent, just malingering or incompetent? Check
with an
> attorney about any discrimination at your workplace.
>
> 22.Can I donate blood before surgery to have on hand in case I need
it?
> a.Can others donate blood for me too? b.Do I have time to think
about this?
> (Donating your own blood several weeks before surgery is
called "autologous
> donation" not often needed, but each case is different depending on
tumor
> location
> and size.)
>
> 23.How much medical care and housekeeping assistance might be
needed when I
> return home? a. Can my family care for me? Can I get other extra
home
> nursing
> help if needed? b. When can I drive again? You may be home in two
or three
> days or a week, you maybe hospitalized for several weeks and need
rehab for
> months, you may be driving again in a few weeks or not for six
months or a
> year. Get to know the hospital social workers, they can answer a
lot of
> these
> questions.
>
> 24.When will I be able to return to work, full-time, part time, and
handle
> everyday activities alone again? Who will help me with disabilty
insurance
> paperwork and social security payments if not? No one gets answers
to all
> these
> questions ahead of time, but some discussion, planning and
preparation just
> in case, might be wise to share with your significant others.
>
> 25.How long will I need medications for treatment side effects
afterwards?
> a. What kind and how many meds? What are their side effects? b.
What if I am
>
> allergic to them? What allergic symptoms and/or drug interactions
should I
> look for while on these drugs? Last time in 2000 I just needed
percodet for
> pain
> for a week. In 1986 I needed steriods for edema(swelling) and anti-
seizure
> drugs for six months.
>
> 26. Do you have a copy of your Advance Directives? (Note: This is
about life
>
> support decisions. This is a legal must before any hospital
procedure and/or
>
> biopsy -- no matter how minor. Usually at large hospitals they have
a notary
>
> available when you are admitted at 5:00 am ugh!) Do you have a
living will,
> a legal power of attorney designated and health care proxy? Have
you spoken
> to a few of your family members about how long you want to remain
on life
> support systems or feeding machines if needed? Each state has
different life
>
> support laws, do you know about your state?
>
> 27.After your treatment, there is no guarantee they can prevent
this
> condition from happening to you again. After any successful
treatment we are
> in
> remission, but there is no known cure. How often will your doctor
monitor
> your
> condition and give you follow-up MRI's? Semi-annual? Annual? It
often
> depends
> on your insurance plan. Contrary to many current medical opinions,
it still
> seems to me from the available national statistics that the longer
time you
> have without regrowth or new recurrence, the more essential it is to
> carefully
> MRI monitor your condition beyond 5 years into the unknown and
unpredictable
>
> future as much as we would like to forget about it and get on with
our lives
>
> like I did in 1986. Before it was finally documented again at 2 cm
in 1992,
> six years later, after a few years of good clean MRI scans. Either
they
> didn't
> accurately report its gradual regrowth from one year to the next,
or it had
> a
> sudden growth spurt in late 1992, the same year I had a total
hysterectomy
> for large fibroids and was automatically given extra estrogen shots
and the
> old Premarin HRT for "instant menopause" in those days.
>
> 28.Where can I get a SECOND and third opinion about all this?
(Note: Many
> HMO insurance companies and Medicare pay for the second opinion,
but you
> must
> often ask specifically for it. If a doctor protests, instead of
agreeing
> and/or even recommending another respected INDEPENDENT outside
doctor for a
> second
> opinion, you probably don't want him anyway!) Go to
www.virtualtrials.com to
>
> see the brain tumor centers list marked with red stars that still
give free
> consultations. We used to all get free individual consultations
from bt
> experts at major national brain tumor conferences too, but that is
not quite
> as
> common now either.
> This is the current short version NOT,but without my feisty
editorial
> comments about glossy radiation marketing brochures, medical
business cost
> effective plans and radiation website advertising materials. etc
>
> Please read some of my other old posts here before they disappear
and become
>
> history which is always a mystery. The drug Mifepristone, a
progesterone
> modulating compound I am taking for the past two years was used on
> meningiomas
> in France almost thirty years ago now, but it is still not offered
as a
> reasonable alternative drug therapy in the US because of FDA
political
> issues and
> male DENIAL and domination of USA women's health and reproductive
health
> service CHOICES in full swing, or should I say still in a full spin
cycle of
>
> denial, which is not just a river in Egypt.
> Reminds me of the incredible 9 year GBM survivor David M.Bailey
singing a
> lovely song about the lifegiving waters of the so called "Lost
River" on one
> of
> his old cds, but the river wasn't lost at all, the people were lost
in the
> desert and didn't find the river again for several generations.
>
> My original shortened post of 28 questions to ask from 1998 is at
Alan's
> other M pages at _http://groups.
> <http://groups. <http://groups.msn.com/Meningioma/yourwebpage.msnw_>
> msn.com/Meningioma/yourwebpage.msnw_>
> msn.com/Meningioma/yourwebpage.msnw_
> (http://groups. <http://groups.
> <http://groups.msn.com/Meningioma/yourwebpage.msnw>
> msn.com/Meningioma/yourwebpage.msnw>
> msn.com/Meningioma/yourwebpage.msnw)
>
> It was based on a list of ten general hospital admittance questions
send in
> to the JHU m list by another meningimate from a 1997 Seattle Heart
Hospital
> newsletter.
>
> I continuously updated it and revised it for the past ten years as
excellent
>
> additional suggestions were sent in to the JHU m list, and as I
sent it out
> individually to many loved ones for their particular family member.
From
> friends of my friends who knew of my own brain tumor history,
suddenly brain
>
> tumor patients seemed to be everywhere. The JHU m list was the
first of its
> kind
> specifically for meningioma patients and their loved ones. But some
of my
> oldest bt friends are gone.
> Believe you me, you should have seen the original standard
meningioma
> patient consultation form that dear Dr Williams posted online in
those days.
> Dr
> Williams, 50, who died suddenly working out in the gym at JHU was
one of the
>
> very few neuro-oncology doctors I know of to have advanced medical
degrees
> in
> both neurosurgery and brain radiation treatment. In 1997 at his JHU
website
> there were rows of boxes and spaces on the standard patient history
form to
> list
> the individual dates of diagnosis and treatment of multiple tumors,
multiple
>
> surgeries, medication and radiation the patient had previously
received.
>
> That scared me good into becoming my own best medical health care
advocate
> and doing my own medical research reading homework. So I do hope to
scare
> you
> enough to check out more than one doctor or one medical opinion.
>
> KISS, keep it simple sweetie, or keep it simple stupid, but always
kiss, use
>
> whichever version self-motivates you to keep on keepin on at the
time. You
> can try each at one time or another LOL like tough love, if reverse
> psychology
> becomes much more popular we might all have bipolar tendencies.
> KOKO I love ya M gang, both guys and dolls. Drink lots of plain
water all
> right? Eat fresh fruit and clean vegatables right? and sleep plenty
right
> too
> of course, it might be hard to find your "new normal" for a few
months or
> the
> first year. Just remember three lefts can make a right, so keep an
open
> mind,
> shouldn't be hard after brain surgery, at least none of us are real
> airheads, there is cerebral spinal fluid in the gaps between
> ventricles.(sick tumor
> humor, forgive me)
>
> So keep on walking, talking and writing to those you meet along
this
> spectacular journey we all share called life. Some depressed
feelings are
> normal
> after something like this, do not hesitate to consult with your
neurologist
> about temporary anti-depressant drugs to get past your personal
stress
> spots,
> but they are not a cure for changing personal relationship issues.
>
> Keep your faith, cherish your reason, treasure your mind and hold
to your
> own good purpose
>
> Please scroll down and look for my musings on meningioma tales
(dural tails)
>
> and other GREY MATTERS of interest to me about a badly maligned
alternative
> drug therapy for meningioma brain tumors, my views about donating
doomed
> surplus frozen embryonic lab specimens to medical science, the
birth of new
> brain
> cells, neurogenesis, medical abbreviations etc
>
> http://journals.
> <http://journals.
> <http://journals.aol.com/anne91547/anne-mcginnis-breens-articles/>
> aol.com/anne91547/anne-mcginnis-breens-articles/>
> aol.com/anne91547/anne-mcginnis-breens-articles/
> GBYAY Anne McGinnis Breen
> _mailto_ (http://mailto/) Anne91547@aol. <mailto:Anne91547%
40aol.com> com
>
> ************************************** See what's free at
http://www.aol.
> <http://www.aol. <http://www.aol.com.> com.> com.
>
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