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Arthur's list of tips for the newly diagnosed!
By Sharon Miller
- Get three, four, five opinions. Gather the information and then make
your decision - there is no cure and no one has the "right" answer since
everyone has different needs.
- Do not care about offending any doctor, nurse - anyone! You are fighting
for your life or your loved ones. If a doctor doesnt return your urgent
call - call every half hour until he does, then get another doctor. Being
polite doesnt always get what you need.
- Keep a notebook. Write everything down e.g. new symptoms, all
medications, supplements, treatments, doctor consultations etc.
- Keep an updated one-sheeter listing a concise history. Make many copies
and keep w/ you at all times e.g. surgery and radiation dates, medication
doses, doctors, etc. Emergencies happen too often with BT's -- we brought 5
copies of this document everytime we enter another hospital.
- Dont trust doctors to talk to each other. We never left an emergency or
hospital room without talking directly to the "chief resident" Dont expect
an intern to relay the information you want.
- Insist on tests - worry about paying later. If you think your having
seizures or there is a problem insist on tests regardless of what the
doctors insist - you know your body they dont.
- Ask other BT patients. Repeatedly, things would happen that the doctors
could not explain or didnot respond quickly enough and we found the correct
information from this incredible list. e.g. seizure medicine can cause
rashes; many BT patients obsess on numbers; swelling of legs can mean
bloodclots.
- Do your own research. Dont take any medications or start any trials w/o
knowing the complete picture. Repeatedly on the list people talk about how
their doctor put them on a med w/o explaining that the potential risks
outweighed the perceived benefits.
- Decide what is important - surviving or quality of life. My father went
almost two years w/no chemo - during this time his quality of life was
superior He practice his first love - lawyering for a year after initial
diagnosis. His second year was spent traveling and fishing. Many doctors
said start chemo immediately after resection - for some that works for my
father who was 68 (at this age chemo really takes a toll)he wanted to go as
long as possible w/o it. Finally, we tried Temodal and then CPT-11 (this
reminded us why we didnt want to do chemo - he was sicker on this then he
ever was from his tumor alone)
- Have no regrets. Make your decisions and move on. Easier said than
done - we repeatedly discuss what if we hadnt done CPT-11 would he have had
3,4 more months. But then again, how could we have lived with doing
nothing. Have no regrets.
- Make your final plans. No matter how painful and surreal. Make all
your final arrangements now. Decide on extraordinary measures (and what that
means to you - DNR means no paddles; no ventilator; no open heart
procedures. Decide on burial or creamtion - arrange everything. You should
have to deal with it on such a day of grief.
- Choose hospice or in home care. Make the plans in advance - prepare for
the inevitable, but hope for the miracle. go visit hospices, care
facilities while you can make rationale decisions; get the right contact
names so if the times comes - it is just a phone call away.
- Find a doctor you trust and make sure you have a monitoring doctor at
a major brain tumor institute. Dont rely on local doctors who know nothing
of the latest treatment or BT symptoms. We had long term relationships with
doctors at DUKE, MD Anderson, Dana Farber, NYU and SLOAN. We often got
different opinions and we ended up making our own decision but it was a
fully informed decision.
- Join a support group or see a counselor - BT's are a hard thing to go
alone.
- Make extra copies of every scan - for extra opinions.
- Forget about statistics - they were compiled a long time ago. New
treatments and meds have changed those stats. My dad was told three months
- a miracle if he lasted a year. Screw the statistics, my father danced at
my wedding.
- Patients who try clinical trials tend to have a longer life expectancy -
this means a lot of things mainly that you are aggressive in treatment.
- Remember things could be worse - you could already be dead. This was my
dad's favorite remark. His laughter made us all survive this orderal.
- Anti-seizure medication causes rashes in many cases, some can be
life-threatening. If you develop one - go to the doctor. There are many
different types to switch to. Keep switching until you find the one that is
right for you.
- Decadron causes weight gain, a moon-shaped face and often a hump on
your back. Tappering off is an art form. Go slowly with the assistance of
a doctor that has perscribed decadron frequently. Decadron can mask many
other problems make sure you get regular phsyicals.
- BT patients get blood clots more frequently than non-BT patients If
you have leg swelling, pain in the lefs or difficulty in breathing see a
doctor immediately.
- St. John's Wort helps with depression but be careful in the sun you
will burn easier.
- Temodal (temodar; temozolmide) can cause constipation - deal with it
immediately. Dont leave your Dr.'s office without medicine that will fix the
constipation.
- CPT-11 can cause immediate vomitting make sure your doctor gives you
something in advance prior to taking it, insist on it. CPT-11 can cause
severe, debiliating diareha. Make sure you understand the procedure for
stopping it and do it immediately. Many CPT-11 patients go to the hospital
because of dehydration cause by CPT-11
s side effects.
- Participate in the www.virtualtrials.com site's Virtual Trial - it may
save your life or someone elses.
In Loving Memory Of Arthur H. Miller
(2/11/31 - 9/8/99) Diagnosed GBM 8/8/97
Here is his history:
- 8/8/97 - DX GBM Left Occipetal Parietal 67 years old
- 8/97 - Resection Glidael Waffers inserted at Columbia Presbyterian(NY)
- 10/97 - 6 weeks Standard radiation
- 9/98 - Recurrence - Gamma Knife
- 3/99 - Recurrence in Temporal lobe starts Temodaltrial at Beth Israel in
- NY(No side effects except constipation)
- 6/99 - CPT-11 escalation does trial (350)at Dana Farber in
Boston(dehydration lead to hospitalization and a continaully downward spiral
that eventually lead to death)
- 9/8/99 - Peacful death
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