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cwmcdaniel Regular
Joined: 13 Feb 2008 Posts: 14 Location: Columbia, SC
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Posted: Wed Feb 27, 2008 8:17 am Post subject: Avastin |
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Has anyone had treatment using Avastin for GBM IV? This will be the next treatment my BIL will recieve. It will be administered once every 2 weeks for 2 months. I know this is not a traditional chemo for GBM but we have been told that the success rate using this is great. Since this drug is not FDA approved for Brain cancer the insurance will not pay for it. At this point (he was diagnosed in May 07) we will do whatever we need to for getting his treatments. Is there any programs anyone knows of that will help pay for this? Thanks to all for your help. _________________ Charlene |
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brainman Site Admin

Joined: 13 Oct 2005 Posts: 4244 Location: Tennessee
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Posted: Wed Feb 27, 2008 12:34 pm Post subject: Re: Avastin |
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cwmcdaniel, I do not know what the name of the program is called but most major pharmaceutical companies have joined together to provide medications for people who are unable to pay. Others who do not participate in this united effort have their own programs. You get the application form(s) from your BIL's medical team. I do hope he qualifies. No, I have never heard or read about Avastin being used for GBM IV but I hope it is helpful to him.
Best wishes. _________________ Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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cwmcdaniel Regular
Joined: 13 Feb 2008 Posts: 14 Location: Columbia, SC
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Posted: Wed Feb 27, 2008 1:20 pm Post subject: Re: Avastin |
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Jim, thanks for posting this information. I did go to the Genentech site and found some very useful information. Yes, it looks like the Drs. at Duke will have to be involved. Some of the informatioin was scarey but that is how this disease is. My sister and BIL don't want to know the side effects because they are afraid it will alter their decisions. I am sure his Drs. will want to dicuss this before his treatment. Again thanks for your input. My prayers are with you. _________________ Charlene |
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brainman Site Admin

Joined: 13 Oct 2005 Posts: 4244 Location: Tennessee
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Posted: Wed Feb 27, 2008 3:10 pm Post subject: Re: Avastin |
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Charlene, I guess each of us are different. I WANT to know the side effects because IT MIGHT effect my decision. My own philosophy is that it is better to know the danger up front rather than being blindsided by them and then asking: "Why the %&(( didn't someone warn me about this?"
But each of us has to make our own choices. At one point doctors in Japan would not tell their patients that their diagnosis because it violated some cultural norm of theirs. I am not sure if it is still like that but my point is that each of us has the right to say what information we want as we as what information we do not want.
Peace, Hope, Love _________________ Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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ksplat Super Moderator
Joined: 26 Apr 2007 Posts: 559 Location: Brisbane, Australia
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Posted: Wed Feb 27, 2008 5:28 pm Post subject: Re: Avastin |
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Hi Charlene
I have heard of the use of AVASTIN for BT's. I am currently a moderator on an Aussie BT Survivor forum & have talked with a couple of people who have used AVASTIN quite successfully. In saying that they have had tumour shrinkage.
I have also read about incidences of this chemo's "side effects", although as you have said previously when you're faced with a cancer like GBMIV, you will give almost anything a try!
All the best to your BIL, sister & you. My prayers & thoughts are with you all.
Cheers, Angie. _________________ Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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cmcd Regular
Joined: 20 Jun 2008 Posts: 11
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Posted: Tue Jul 15, 2008 6:21 pm Post subject: Avastin |
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This is a positive udate on my BIL. He completed the Avastin with great results. For the first time since the start of this his cancer has shown a slight shrinkage. My sister and BIL went on their first vacation in 2 years but it was not without incident. He felt bad several days, they had car trouble (new brakes before they left home but were not installed correct), and the weather did not cooperate. Since they have been home he has started running a fever. He has been checked for infections and pneumonia but it has been determined that this may be a side effect of the new chemo. A call is in to Duke to see if they will start the Avastin as his maintenance chemo.
My prayers and hope are with all effected by this disease.
Note: I was posting under cwmcdaniel but my email address at work changed and I was locked out by the Administration of this site. It took me a while to figure out why but I do understand now. Thank you for your continued support for this valuable site. |
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brainman Site Admin

Joined: 13 Oct 2005 Posts: 4244 Location: Tennessee
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Posted: Wed Jul 16, 2008 8:16 pm Post subject: Re: Avastin |
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Good to hear from you cmdc. Duke is a wonderful hospital. Your BIL should receive excellent care there.
I am puzzled by why you count not just change your email address in your old username but glad to have you continue as a member of our community. _________________ Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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cmcd Regular
Joined: 20 Jun 2008 Posts: 11
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Posted: Mon Aug 11, 2008 2:17 pm Post subject: Another Update |
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Duke did change my BIL to CCNU right after Avastin. His platelets went down slightly. They requested an MRI from SCOA. They found that the effected area is now back to where it was in March. He will start Avastin & CPT-11 tomorrow. Hopefully it will work as good as it did the first time. We have really been through it this last week waiting to see what Duke was going to recommend. There was a big sigh of relief when this decision was made. My BIL is in his 18th month with this ugly disease. He had his first seizure 2/2007 and was diagnosed 5/2007. I get a little nervous when I think of the statistics of 18-24 months survival rate. They go back to Duke the middle of September.
My thoughts and prayers continue and will always be with those on this site. |
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ksplat Super Moderator
Joined: 26 Apr 2007 Posts: 559 Location: Brisbane, Australia
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Posted: Mon Aug 11, 2008 6:30 pm Post subject: Re: Another Update |
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Hello Charlene
It seems that our loved ones are travelling similar paths with their BT's? My Bro hasn't been too good lately & is having an unscheduled MRI today & will receive the result tomorrow.
I too am nervous with the 18-24 mth survival! Our Mark is at the 18mth mark with his tumour as is your BIL.
My Bro has continued on Temodal since May with the 5/23 regime. I hope & pray your BIL has a favourable reaction to his latest chemo treatment.
You continue to be in my prayers & thoughts.
Cheers, Angie. _________________ Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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brainman Site Admin

Joined: 13 Oct 2005 Posts: 4244 Location: Tennessee
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Posted: Tue Aug 12, 2008 12:17 am Post subject: Re: Avastin |
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cmcd, I took CCNU (PCV actually) for 13 months. I tolerated it fairly well. It did make me sick 1-2 days per cycle and messed up my blood counts to a dangerous level, but it worked. I hope it also works for your BIL. _________________ Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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cmcd Regular
Joined: 20 Jun 2008 Posts: 11
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Posted: Tue Aug 12, 2008 9:18 am Post subject: Re: Avastin |
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Thanks for your responses. My BIL starts back on Avastin today. He is still working fulltime and has some side work in renovations he continues to do. He has amazed us. He continues to lose weight and he is small anyways. My sister makes him a milk shake every night to add more calories in his day.
Prayers are sent your way. Have a good day. |
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Glioblastoma Regular

Joined: 20 Oct 2008 Posts: 18
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Posted: Tue Oct 21, 2008 2:45 pm Post subject: Re: Avastin |
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| My dad is taking Avastin with CPT 11. We were told it works 30% of the time. He went for an MRI and the tumor had a 50% decrease in density. I hope it works for you |
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cmcd Regular
Joined: 20 Jun 2008 Posts: 11
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Posted: Wed Nov 19, 2008 12:24 pm Post subject: Re: Avastin |
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I hope someone can help with this question. My BIL was taken off Avastin after 6 treatments. There was a shrinkage in the cancer site. He was put on Temador for 1 month. The MRI after that month showed the cancer was back to the same size it was before the Avastin/CCNU treatment. He was put back on Avastin and another MRI taken 30 days later. There has been some slight growth. Duke has taken him off the Avastin and put him on VP-16. There is discussion about the possible need for debulking and maybe using the Wafers and he has to be off the Avastin for 30 days prior to surgery. My BIL has worked full-time during all of this. I can see changes in his thought process (he is just a little slower than before all of this but can still make decisions). How will this debulking and wafers effect him? How soon after the surgery will he be back to work? He says work is his therapy.
Thanks for this site. I come here every day even though I do not post. My prayers continue for the patients, caregivers, and survivors. |
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Mama 2 2 Experienced user
Joined: 29 Nov 2007 Posts: 75 Location: Sunshine Coast, BC
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Posted: Wed Nov 19, 2008 3:46 pm Post subject: Re: Avastin |
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Hi Cmcd,
My hubby has had two surgeries, and with both he was back to work in about 5wks. I think it likely depends on age and type of work, along with how intense the surgery has to be perhaps. His is not a gbm.
My hubby was pretty young with both, but his job as a chef meant he had to be on his feet all day for 10hrs or so.
Is your BIL on decadron, or a steroid at all? I found this affected my husband with his ability to concentrate/focus more than anything. I thought it was from the tumour because I noticed some small things before the started the decadron, but he felt it was the meds and I think it was worse the first week or two that he was taking them.
Aside from taking a leave due to surgery, my husband never took a single sick day in the past 6+ yrs because of all this. He even tried to go to work the day after having a seizure at 2am last year, but they sent him home. He recently took a leave from work to go through a natural, complimentary treatment after his tumour more than trippled in size while on temodar. He was SO worried that he would sit around and get depressed because he felt at least working would take his mind off of things - but since he has been looking after our two little ones while I pick up extra work, he has had no time to get depressed - they keep him busy! We've also just tried to incorporate a really positive attitude in general which has helped. Taking the time off work was one of the hardest things for him to do - but he is glad he decided to.
Best of luck to your BIL - and you and the rest of your family too.
~C~ _________________ ~Life's too sweet to be bitter~
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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cmcd Regular
Joined: 20 Jun 2008 Posts: 11
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Posted: Thu Nov 20, 2008 11:53 am Post subject: Re: Avastin |
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Thanks for your reply. I think after several days of digesting the new information the fear of another surgery is somewhat settled. My BIL has done great through this and I have faith he will continue this journey with much HOPE. I read an article in Cancer Compass written by J Gould titled Median Message. Of all the statistics I have read he finally made me understand that they are just numbers. Everyone reacts to these trial and errors differently. I am always looking for an answer when there really are none. We trudge along and I support and do for my BIL and sister as they need.
Again, prayers and HOPE is extended to all on this forum. |
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