Luvingwife

Luvingwife's Recent CancerCompass Activity

• Luvingwife has replied to a post on the message board

  Wxyz I don't know about the Aflac policy, but I know that our neuro onc said he will never say dh is 'cancer free' or 'in remission' . Those terms are not used with Glioblastoma even with years of clean MRIs. I can tell you that my dh went on medicare with a supplehment after turning 65. He diagnosis has nothing to do with his coverage. We have done both standard medicare with a supplement p...

  May 13 at 1:30 AM view post

• Luvingwife has replied to a post on the message board

  Jerry, I agree with the other posters, each case is unique, and depends on alot of variables. Another good web site is www.virtualtrials.comand there is a great article written by Ben Williams, a long term GBM survivor who happens to be a dr. ; there is an excellent article 'for the newly diagnosed' and links to some survivor stories.   My dh was diagnosed after a seizure ...

  May 13 at 1:09 AM view post

• Luvingwife has replied to a post on the message board

  Bilbosgirl: I don't know what the 'standard' treatment is now for Temodar. For what it's worth, this was our experience:  When DH was on temodar (starting July 2004 ) the standard was 6 months. The medical oncologist told us there was no reason to continue and did not give us the option to continue after 6 months.  When recurrence came 2 years later, we went to a neuro-oncologist and had sev...

  March 19 at 1:04 AM view post

• Luvingwife has replied to a post on the message board

  GoodolDan: We found that it is best to stay ahead of the expected side effects, so I recommend following the drs instructions. Once the nausea comes on, it is very hard to settle down.  Good luck Laurie V www.caringbridge.org/visit/johnv  

  March 19 at 12:53 AM view post

• Luvingwife has created a new message board discussion

  Friends: My DH has been under the care of a neuro-oncologist since GBM recurrenced in 2006.  Disease has been stable for several years, but there are some deficits.  The dr is now referring DH for a consult to a neurologist that specializes in the care of 'patients with neurodegenerative disorders, with particular itnerest in patients with cognitive dysfunction...' The hope is that this dr may be some...

  February 25 at 6:08 PM view discussion

• Luvingwife has replied to a post on the message board

  May I ask what is the 'oral chemo' that she takes once every 6 weeks?  My DH takes Tarceva 150 mg every day. It is not 'chemo' but a targeted therapy called an epidural growth factor inhibitor, usually used in pancreatice and small cell lung cancer. Laurie V www.caringbridge.org/visit/johnv

  February 25 at 5:59 PM view post

• Luvingwife has replied to a post on the message board

  Kathleen: Thank you for posting. I remember how encouraged we were when first diagnosed (2004) and I would run across 'long term survivors.' Then I thought that 2 years from diagnosis was a long term survivor... Who knew there were others?! Now dh is one of those other lts. We are now 8+ years since diag and dh right now sits in the recliner following his favorite college basketball team on tv. Y...

  February 05 at 1:44 AM view post

• Luvingwife has replied to a post on the message board

  Hi Gstaton, You have found a good resource, welcome. My DH was diagx in 2004  with GBM left frontal lobe. He had the standard treatments and some other treatments after recurrence in 2006.  He is still in pretty good shape, with few obvious deficits. He is always tired and sometimes confused and forgetful. But he still drives, grocery shops, follows sports on tv, stays home by himself (...

  January 17 at 2:10 AM view post

• Luvingwife has replied to a post on the message board

  Hey there, sorry to hear about your circumstance, it is bad enough to battle this disease and then deal with the finances!  I would first try the pharma company that manufactures Temodar.  Here are some other resources that may also help or refer you to others. Each organization has different requirements to participate and cover different diagnoses:  Patient Advocate Foundation (800-532-527...

  January 12 at 5:52 PM view post

• Luvingwife has replied to a post on the message board

  Thanks for all your input. Yes, he takes prilosec (for years before the GBM).  He sees the N/O in January, so I will be curious what the dr. says. Laurie V 

  December 13 at 2:42 AM view post