CancerCompass message board discussion started by Gilda1981 on 4/8/2008 http://www.cancercompass.com/message-board/message/all,22845,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all, It has been months since i have last writen to you all. I thought i might take this oppourtunity to say i have read over your latest stories, and my heart and thoughts go out to you. This disease is so hard to deal with, and i suppose at this moment i am getting out what i feel inside. We have had a tough journey the past few months. Ok so my mum, she was diagnosed 11 months ago with GBM4, and she was doing very very very well on temodal, after resection and radiotherapy. She had an MRI in November 07 and that was clear, and because she was doing so well, she didnt get an MRI until Feb 08. This MRI showed the cancer had regrown, Doc ordered PET scans, and they were "HOT"Mum is now on Temodal with Procarbazine, and Avastin Infusions. She is tollerating all very very well. The hardest news was hearing that the cancer had come back, it was like she had been diagnosed all over again, we broke down, and now slowly we are getting stronger again.the set back was hard, i dont know how we will deal with another if any.  My mum looks fantastic, and i believe that her speach had improved since being on avastin and procarb/temodal. And because we have a plan of attack we are coping. Some days she is sad and low, and crys due to  the uncertainty of this disease, and others she is bouncing off the walls with energy. What more can i do to help? i feel helpless... I would love to hear from people who have had set backs and are still going strong, and who is on Avastin, and is it a miracle drug as they say. Does it always work? what are we to expect? I am in Sydney Australia, any one on this board from here...?  Thank you for listening, i needed to let it out. I wish i had gtreat news like mum has had no regrowth, and we really believed that would be the case, but you know, you become complacent, and you cant see it, and thats whats hard... you think its gone... but then up it pops... Ok thanks for listeningLove Gilda    Gilda1981 Tue, 08 Apr 2008 00:00:00 GMT Gilda, thank you for sharing your story with us.  I know it must be so hard...you think it's gone and then to get hit with that news is horrible but you pick yourself up and go on with the next course of treatment from there. We are only 2 1/2 months into this journey and it has become a huge struggle for our family but I pray every day and just try to get through each and every day.Linda  velcrobaby Wed, 09 Apr 2008 00:00:00 GMT Gilda,I'm so sorry about your Mother. I understand the feelings of set back. My dad started this journey in June 2007...and he had full ressection in July, learned he had GBM Stage 4, opted in radiation only...finished up in September w/that and really lived a good quality life until Feb this year. We learned the tumor was re-growing, he then did a cycle of Temodar..tolerated it quite well and was going to start a 2nd cycle...until today...speech was slurred badly than before and we knew something was wrong. Well, the tumor has grown even more since Feb. Another set-back and just the reality of this disease. They are now talking a 2nd surgery already on Friday....setback and major decisions all in one day. How can we cope? I guess we just find a way because we have too. My dad also is in great spirits one moment, sad the next...when he appears to not be himself whether it's anger because of the meds or the doctors that frustrate him, or his speech not being up to parr...I just know it's the disease talking and not really him. All I can is keep the hope and pray each day is better than the last and that when his day comes he will go peacefully with no pain.I'm not from Australia...from the USA. But you and your Mom are in my thoughts.Hang in there,Jill Jilby Wed, 09 Apr 2008 00:00:00 GMT Thank you all for your kind words. I wrote to you all 6 weeks ago with this update,  i thought i will give you our journey and results since then.Mum started on Avastin straih after she was told that she had regrowth, and has been on that every forthnight. She is still on teodal and has increased her chemo using procarbazine, she is on the 20/8 protocol. Her mri as of yesterday came back with a reduction of both her tumors, and no new growth. So some thing is working, and i really recommend avastin as apparently 70% of patients (in oz) show shrinkage. As long as mum is alive there i hope for a cure, and a new incredibe drug that will buy us more and more time. My heart goes out to yo all... i can tell you its been a pretty tough couple of weeks, and now i am mentally exhausted...Yipee however as mum is having her 1 year anniversay tomorrow the 3rd May. I will praise the lord. Thanks for listeningGildaDaughter of Janice Diagnosed 3MAY 07- frontal and occipital lobe2 operations12 months of temodal1 month procarbazine1 month avastin  Gilda1981 Fri, 02 May 2008 00:00:00 GMT