Dad's Cpt11 and Avastin 3 treatments for 6 weeks. WoW!!!

joerullo Member Posts: 9
edited March 2014 in Brain Cancer #1
My dad was inoperable given no hope and had a successful event free biopsy no problems Aug07. He went on to the Temador and Radiation at the same time. Then, he did temador up to 340mg 5days on and 23 days off. In April, after consulting with several professionals in my father's care including these messege boards, I decided to relieve my dads doctor who did the temador and went to Sloan Kettering again as we did for the biopsy but now for the avastin/cpt11. If he didn't get the cpt11 and avastin by the way the tumor was growing in the left temporal lobe only. However, the flare (swelling in MRI) was almost the whole left hemisphere at that point. We were signed off when my dad got his echo cardiogram, nuclear stress test, and one other heart test? We did it so quick since they wanted us back in one month and had him ready in two weeks instead. He started cpt11/avastin on May 15, 2008. His initial tumor was the size of a quarter but grew to a half dollar sized with two pennies and a nickel attached. I use coins as analogies but it is to the T in size. That tumor we found out today shrunk conservatively 15%. The best news is the smaller tumor that wasn't even visual back in June07 and grew from a dime to a nickel to a quarter in months was agressive. THAT TUMOR IS NOW THE SIZE OF A SMALL NICKEL. Yes, it decreased the tumor by 50%. Most important, the whole left side of my dad's brain showed white flare which is swelling in April. However, today's MRI showed little more than a couple of lines of white showing that reduction in the tumor size=much less swelling==much less symptoms the last two weeks which made me feel good about today's MRI. This stuff works and he doesn't throw up, feel really sick and tired like the temador and radiation, and he can enjoy food because the temador burns the taste buds and effects digestion. However, temador is the first line of defense and there must be growth to go on cpt11/avastin. The temador kills alot of the cells but when it stops working you need to move on because it is cruel if the stuff is used on a patiend and it doesn't work. It is the benefit that is measured against the risk. There are alot of risks with cpt11/avastin such as rarely burning a hole in the intestines, deadly diarrea, and bleeding due to the avastin which kills tumor blood vessels and can cause hemmoraging. I am not a doctor and do not endorse any treatment for anyone since everyone is different. My dad is a healthy 65 year old man besides the brain tumor. Health conditions cause this disease to be variable in treatments and risk with different patients. In addition, many treatments are out there and the statistics are 1 in 4 cancer patients get better without explaination. I believe some of these snake oil treatments are BS and are dangerous. The treatments for cancer are archaic at best and primitive. Think about it. Chemo drugs are derivatives of chemical warefare agents used in world war II. And, the radiation was also discovered in WWII. when we bombed Japan. We can go to the MOON but we can't cure cancer and at best we can prolong life but it does resemble torture and living life in the zone of chemo and radiation. THE KEY IS living in between treatments. If someone doesn't take advantage of everyday they are given by these horrible drugs it is a wasted day. These drugs are only for individuals who love life so much that the inconvenience at best and pain and anguish at worst is worth every single day these drugs will squeeze out. That is reality. Lets be honest. The radiation and temador wasn't available a little over a year ago until out of phase III. Before that it was temador only. And, the cpt11and avastin was for colon cancer which is almost guaranteed success. Only 6 months ago or less the cpt11 atleast was made available to brain tumor patients with Glioblastoma multiforme and approved by major insurance companies. Each dose of the combined infusion runs a little over 17k. I hope everyone who reads this understands that my dad decided that he wanted to live and by instinct i sniffed out the path thats all. There is one path for gbm and it seems like the cpt11/avastin is it at least when there is no hope. My dad was in bed on May 1, 2008 for the first time since June07 no energy just not making it in every sense of the medical translation in lamon terms close to death and the MRI showed agressive growth and swelling and ready to burst. Now, 50% reduction in one and 15% in the other and almost total elimination of the chronic swelling that was emeshed in the left region of his brain. The swelling caused most of the symptoms which is initially caused by the tumor growth. When the tumor shrinks the swelling goes away which is healing. The brain is an amazing organ. However, this disease has two very interesting characteristics. First, it seems it hits people who haven't been sick a day in their lives. Second, it is a cancer that doesn't normally leave the brain but in rare circumstance the spine. My point, the brain barrier is hard to penetrate to leave but to get in these medications have it to a science on how to deliver the chemo's. Last, blueberries are the only brain healthy food that releases antioxidants that can PENETRATE the Brain Barrier. I gave my dad blue berries, soy milk, and walnuts as recommended by most brain specialist look into it. I eat salmon also and my brain tingles from the fat omega3/6. Did you know that Alaskans have the lowest cancer rates and american indians. Yes, they eat salmon and fruits like blueberries. Most important, water is needed throughout any and all chemo treatments and my dad never drank water and it is a challenge to get him to. I hope you all have success and may love be with you all.


  • janiej
    janiej Member Posts: 1
    i loved reading your story. my husband is still on tamador. they say if mri is bad in aug. avastin and cpt11. janie
  • christinamw
    christinamw Member Posts: 2
    janiej said:

    i loved reading your story. my husband is still on tamador. they say if mri is bad in aug. avastin and cpt11. janie

    my husband did 5 months of avastin and chemo after his second surgery in october he has bin tumor free for 6 months our prayers and hopes are with you all
  • aaz
    aaz Member Posts: 4

    my husband did 5 months of avastin and chemo after his second surgery in october he has bin tumor free for 6 months our prayers and hopes are with you all

    Your story offers hope, how
    Your story offers hope, how has he recovered after he has been tumor free? Has life gone back to normal?
  • Mannie
    Mannie Member Posts: 52
    CPT11 and Avastin
    A neurosurgeon came to our Burger King Cancer Caring brain tumor support group in Pittsburgh meeting a couple weeks ago in a conversation, question and answer type of discussion. We talked almost exclusively about CPT11 and Avastin for over an hour. I never had any doctor sit and talk to me for an hour so I really appreciated it. Avastin has been used for GBMs for about 3 years now but it not labeled for brain tumors, just colon cancer. Because of that, some doctors will not discuss it or prescribe it to patients. The ones who do prescribe it have to go around the actual diagnosis of brain tumor for insurance to cover it. That's a shame. Hopefully, the FDA will approve it for brain tumors within the next 6 months. The neurosurgeon, I can't remember his name right now, said that Avastin has, on average, provided 24 extra weeks of life to the people that have taken it. So, of course, some people have had more than that and some have had less; it all depends on a million factors, as we all know. I was fortunate that Temodar has worked successfully for me. There's some tumor left and it will always be there but it's stable enough to discontinue treatment for fear that my marrow would be too suppressed to regenerate white cells, etc. I could see if I can find the neurosurgeon's name if you'd like to contact him to ask him about any questions you have.