justamom

justamom's Recent CancerCompass Activity

• justamom has replied to a post on the message board

  Careg, Have you gone online to find a neuroncologist near you? It's your brain and your GBM and you deserve someone with whom you have confidence.  Our neuroncologist's PA, told me there were only 136 neuroncologists in the United States.  We travel 1 1/2 hours to ours. I think there are many others who travel much farther.  Just a thought.

  February 03 at 5:12 PM view post

• justamom has replied to a post on the message board

  I have also read, with limited understanding that Avastin masks tumor growth. I don't know about all of th scientific workings of the drug, but I'm pretty sure it buys time. When the MRI showed the first growth, while on Avastin, the N O put him on Temador. Donnie took Temador, without incident, 5 years ago. But when I gave him the 2 nd night's dose(420) mg, he seized for 5 hours, off and on. The seizures subsi...

  January 21 at 4:49 AM view post

• justamom has replied to a post on the message board

  Donnie wasdiagnosed 5 1/2 years ago with astrocytoma grade Ii. The MRi he had in Feb 2012, showed a gbm grade I V , although he had been dropping things out of his left hand since Jan 2012. Resection in Mar and April. He started Avastin in May. T he first 2 month MRI showed small shrinkage, the second showed it was stable, the third showed small growth and the last MRI showed the tumor had doubled in size. He i...

  January 20 at 2:32 AM view post

• justamom has replied to a post on the message board

  Sarahgrey, thank you for your response. We were kind of rockin along with the Avastin keeping things stable and are, now going into another phase, I fear. I refer, often, to brain hospice for symptoms to expect. I know incontinence will be a factor. I appreciate your voice of experience. Nancy

  January 19 at 9:15 PM view post

• justamom has replied to a post on the message board

  How does the incontinence begin? Does it happen all of a sudden or is it an occasional accident, at first and then increase. Sometimes my Donnie will empty his bladder then 30 minutes later, think that he has to go again. I'll hold the urinal for him sometimes 15minutes and then agree that we will try later. He voided in the bed twice last week. He didn't even realize it the first time. I dismissed it, to him,...

  January 19 at 5:08 AM view post

• justamom has replied to a post on the message board

  Ubsueq, When Donnie came home from the hospital, after his 2nd resection, with left side neglect, lots of my friends told me I should contact Hospice.  They said Hospice would be able to help me with Donnie's caregiving. Through conversations with Hospice and ultimately the social worker at Moffitt, I realized that Hospice could only be called when all cancer fighting treatments were stopped.  In other wo...

  December 09 at 3:57 AM view post

• justamom has replied to a post on the message board

  Echatlos, Thank you for your supportive response.  Donnie has been on Avastin for 6 + months.  the first MRI showed a slight decrease.  The 4 month, second MRI, the tumor and edema rmained stable.  The last , 6 month MRI, he had showed a small increase in tumor growth and edema.  The NO put him on 420 mg of Temador for 5 days, off 23.  He was on Temador, successfully, 5 years ago when h...

  November 13 at 1:31 AM view post

• justamom has replied to a post on the message board

  I think the temador is giving Donnie seizures.  A half hour after he takes it he starts having seizures for about 5 hours.  Then they subside to 2 per hour.  This has happened the 2nd and 3rd night he took them. The doctor ordered a Dilantin level but never called me back on Friday to advise me about discontinuing Temador.  Sooooo, I discontinued it myself.  He only had a few seizures th...

  November 04 at 2:45 AM view post

• justamom has replied to a post on the message board

  I think this is the "something else".  Originally, after the resection in March, they were going to put him on Temador.  He had radiation and Temador, 5 years ago with the grade II.  But, when they did another resection in April, it was decided they needed something more aggressive, thus the Avastin. The NO said they would keep him on the Avastin and  420mg of Temador for 5/23 and reassess i...

  October 31 at 2:54 PM view post

• justamom has created a new message board discussion

      After 6 months of Avastin, Donnie's MRI showed small growth and swelling.  His tumor is in the frontal lobe, lying next to the motor cortex.  He is living with left side neglect, confusion and short term memory loss.      He will begin Temador tonight for 5 days and off 23.  He has taken Temador 5 years ago when first diagnosed with diffuse astrcytoma.  &nb...

  October 31 at 12:39 AM view discussion