BRAIN TUMOR TREATMENTS: Tips for newbies
Sponsored By
Medicenna Trial
Please Click On The Above Banner For More Details
Braintumor Website

Arthur's list of tips for the newly diagnosed!

By Sharon Miller

  1. 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.
  2. 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.
  3. Keep a notebook. Write everything down e.g. new symptoms, all medications, supplements, treatments, doctor consultations etc.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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)
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. Join a support group or see a counselor - BT's are a hard thing to go alone.
  15. Make extra copies of every scan - for extra opinions.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. St. John's Wort helps with depression but be careful in the sun you will burn easier.
  23. Temodal (temodar; temozolmide) can cause constipation - deal with it immediately. Dont leave your Dr.'s office without medicine that will fix the constipation.
  24. 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.
  25. 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





Home | Brain Tumor Guide | FAQs | Find A Treatment
Noteworthy Treatments | News | Virtual Trial | Videos | Novocure Optune® | Newsletter
Donations | Brain Tumor Centers | Survivor Stories | Temodar®
Fundraising For Research | Unsubscribe | Contact Us

Copyright (c) 1993 - 2017 by:
The Musella Foundation For Brain Tumor Research & Information, Inc
1100 Peninsula Blvd
Hewlett, NY 11557
888-295-4740


Website Design By
World Wide Websites