johngiustino

johngiustino's Recent CancerCompass Activity

• johngiustino has replied to a post on the message board

  It is hard to read these reports if you are not a doctor.  What really counts is how this compares to the last MRI.  Such a comparison will show if things are getting better or worse. Your doctor should show you images to compare and describe what he sees to you. If you are not having a dialogue with your doctor about what he sees and what it means, find another doctor. 

  2 hours ago view post

• johngiustino has replied to a post on the message board

  Definitely look into Elavil - it is my NO's favorite to prescribe. It helped me sleep at night and smoothed my mood during the day.  It also helped with headaches and some neuropathy I had.  Finally, it gave me some fun and very vivid dreams (e.g., I could taste food and feel temperatures in some of my dreams)! Good luck, JG

  May 15 at 3:10 AM view post

• johngiustino has replied to a post on the message board

  I don't know where your husband is in his fight, but the simple answer is that they will continue until the NO gets his seizure meds right.  For many, the standard dose of Keppra works just fine and they may never have a problem again. That is how I started and but I kept having seizure all the way through the highest dose possible of Keppra.  When Keppra did not work, they dosed me down and added Vimpat. ...

  May 06 at 2:58 AM view post

• johngiustino has replied to a post on the message board

  That is not necessarily true.  This from an earlier post: There is a MRI related technique call MR spectroscopy that can distinguish between growth and rediation necrosis.  Not sure about pseudo progresion.  See: http://www.mayfieldclinic.com/PE-MRspectroscopy.HTM MRI perfusion can distinguish though: http://www.clinicalimaging.org/article/S0899-7071(12)00094-0/abstract I get both done as part o...

  April 30 at 12:03 AM view post

• johngiustino has replied to a post on the message board

  Absolutely it is the steroids.  That was me when I was on decadron.  I pushed my wife, screamed at my kids, + had an insatiable appetite.  If you don't know why he is on such a high dose, talk to your doctor.  If he does not have a good reason, insist he be weaned off or down from his current dose.  If I had never asked/insisted, I might still be on it! Best of luck, JG

  April 28 at 3:40 PM view post

• johngiustino has replied to a post on the message board

  No doctor should be quoting survival rates to you.  I was told the same thing by an ER doctor.  That was 29 months ago and I am recurrance free to date.  I was even told my resection scar was healing.   There are clearly factors that can lead to lesser or greater survival, but remember you are unique and not a statistic.  I used to worry about statistics a lot and could quote them to you, bu...

  April 15 at 11:41 PM view post

• johngiustino has replied to a post on the message board

  Is there a good reason to be on it?  Has an MRI showed swelling?  Sometimes you need to really question why medicine is needed.  I was having rage, swelling, and an insatiable hunger that came with extreme weight gain while on dex.  I finally asked my doctor if I still needed to be on it because he said the swelling had gone done.  He agreed and put me on a schedule to wean myself off of dex....

  April 14 at 2:35 AM view post

• johngiustino has created a new message board discussion

  An interesting story about a fellow survivor http://www.myfoxal.com/story/21970328/f-cancr-license-plate-causing-controversy -JG

  April 14 at 2:29 AM view discussion

• johngiustino has replied to a post on the message board

  Here is more technical review, but supports what I mentioned. Bring it to your NO: http://www.ucsfcme.com/2010/slides/MRO10001/11HessImagingTechniquesForDifferentialDiagnosisOfRecurrentBrainLesions.pdf

  March 31 at 6:08 PM view post

• johngiustino has replied to a post on the message board

  One more thing: The techniques I mentioned are used to determine what is the nature of enhancement. Just looking at a regular NMR readout, I believe, is not enough and is probably subjective and based on the NO/radiogist's experience.  Again, ask your NO.  

  March 31 at 6:03 PM view post