jjcsdaisy1

jjcsdaisy1's Recent CancerCompass Activity

• jjcsdaisy1 has replied to a post on the message board

  My husband's GBM was not methylated and he was on Avastin/Tarceva (clinical) for about 11 months (after surgery to remove the tumor and the traditional radiation/temodar period) also without any regrowth.  However, the cancer did begin regrowth this past December.  He has just started on another clinical that is administering a vaccine along with the Avastin that they are hoping will help the body...

  March 01 at 6:17 AM view post

• jjcsdaisy1 has created a new message board discussion

  Hello, My husband has just started the clinical study with Rindopepimut/Avastin.  He had a brain tumor removed October 2011 - front right - that was diagnosed as GBM.  His tumor was unmethylated and, after the initial radiation/chemo (Temodar), he was on a clinical trial for Avastin/Tarceva with no tumor growth found until this past December (2012).  At that time, he was tested for VGFRviii(?) ex...

  March 01 at 6:10 AM view discussion

• jjcsdaisy1 has created a new message board discussion

  Has anyone on here been on Avastin long term (over a year?) and if so, how long and with what results?  What symptoms from the long term Avastin use?  Anyone longer than a year on the clinical of Avastin/Tarceva? Lisa

  December 20 at 5:11 PM view discussion

• jjcsdaisy1 has replied to a post on the message board

  My husband (55) has GBM - had his resection (right frontal lobe) last October and...after his surgery for a good while (month or so) he slept a LOT - and then started both radiation and chemo and from there just into a clinical with chemo (over a two or three month period he began sleeping less and doing more BUT...there are still days that he sleeps 9 or 10 hours a night and then off and on during the days he n...

  August 31 at 6:42 PM view post

• jjcsdaisy1 has replied to a post on the message board

  Hmmm...interesting thought...are you thinking that long amounts or exposure to air flight could have some effect on GBM's?  My husband (55) diagnosed last October 2011 - resection done and on an Avastin/Tarceva clinical and doing well so far (other than having to deal with the effects of the chemo) had been rotating every other month to Russia (from Texas) for three years...was off for six months and then had ju...

  August 09 at 5:20 PM view post

• jjcsdaisy1 has replied to a post on the message board

  How wonderful!  Congratulations :) - so nice to hear such good news - here is to praying you many, many, many more anniversaries to celebrate with your children and loved ones Lisa

  March 31, 2012 view post

• jjcsdaisy1 has replied to a post on the message board

  Kristin, My husband was diagnosed in October 2011 - had a resection where they removed most of the tumor (right frontal lobe) - went through radiation/chemo (Temodar) - had his tumor tested found it unmetylated so entered a clinical with Avastin/Tarceva.  The side effects he has are some fatigue...diahrrea and rash (mainly from the Tarceva I believe).  The Avastin is the drug that I believe works on the bl...

  March 15, 2012 view post

• jjcsdaisy1 has replied to a post on the message board

  I'm so sorry Bob.  It sounds as if she gave it the good fight - my husband is on a trial with Avastin/Tarceva and goes for his second MRI after starting it this coming week.  He is doing well at the moment and I've adopted the motto of living for each day with him...I hope that we will be granted another good year or two.  And...as I'm sure you did for the past couple of years...will hope and pray ...

  March 05, 2012 view post

• jjcsdaisy1 has replied to a post on the message board

  Hello,  I try to keep track of any new information coming in - thank you all for posting whenever there is something you find that is new, interesting or promising - I appreciate your sharing - its hard to monitor and keep track of it all without help. Unfortunately, my husband does not have the methylization.  He was diagnosed this past October (at 54), the tumor was in the right frontal lobe and he had a...

  February 16, 2012 view post

• jjcsdaisy1 has created a new message board discussion

  Hello all, I'm hoping that someone might be able to help me with a complication my husband is having due to having hemorroids and being on Avastin/Tarceva.  Unfortunately, he is having problems with diahrrea due to the Tarceva which is causing a flare up with his hemorroids and, with the Avastin infusions, he is now experiencing bleeding.  We have been using Immodium to help with the diahrrea but, although...

  February 07, 2012 view discussion