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GBM regrowth/Avastin/CPT-11

dadwillbeatgbm
Posts: 1
Joined: Jan 2007

Hello Everyone! My dad (Charlie) was diagnosed with GBM last Feb. 11. He was 67 at the time. Perfect health otherwise. It was his first trip to the ER and his first trip to the hosptial. He hadn't even had an IV before!! He went to his family doctor on a Monday because my mom noticed that the left side of his mouth was droppy. The doctor said it was Bell's Palsy and sent him to therapy to get some sort of electric shock therapy. The therapist said he was responding to the treatment. By Friday he was dragging his left leg a little bit and something was different. Mom tried to get him to go to the doctor but he wouldn't go. I am 29 and I live 2.5 hours away and I come home nearly every weekend to visit my parents because I am single. So early the next morning around 1:00 AM or so I talked him in to going to the ER. The ER doctor did a CAT scan and he came back in and told us that Dad had a brain tumor and needed to go get an MRI at another hospital. My parents live in a small town in IN so the nearest "bigger" hospital was in Evansville, IN. So he was admitted and had an MRI. A neurosurgeon came in to tell us what he thought it was. He told us that dad had GBM and that he had 3-6 months to live. What a terrible shock as you all know. First of all.......we refused to believe that the doctor could put a time on someone's life. The only person that knows is God and my mom told him that. He didn't respond very well to that. He was a little cocky...(good surgeon, but cocky at first...I).My dad asked if he could take anything to shrink the tumor before having surgery. He told us no and he would never be able to have chemo or radiation. He told dad that he had the option of surgery. He told us that he would probaby never make it out of surgery alive. He said he could bleed to death, die of stroke, or be in a coma. Dad was so positive. He kept us going. He prayed and asked God for help. Dad made his decision to go ahead and have surgery. He said he had to try he just couldn't lay around and wait. He had a 9.5 hour surgery Wednesday 2/15/06. The doctor was not able to remove it all, but he did remove a good portion. His neurosurgeon was amazed when he came out to talk to us after the surgery was over. He told us that when he was cleaning up he looked over and saw Dad's eyes open...so he went over and bent down and waved to Dad.....he said Dad waved back. He was so excited. He said we could see him soon. We went into his room to see him and he couldn't talk yet because he was still hooked up to everything. Two hours after that we went back in and he was talking to us. It was amazing. Then we had to stay out for the night. We stayed the night in the waiting room before and after surgery because we couldn't leave him. We went in to see him as soon as we could the next morning and it was amazing. He was hungry and wanted food. He looked good and he had NO PAIN MEDICATION. I expected him to be on some sort of heavy duty pain killer. We visited for awhile and went back into the waiting room and in popped his neurosurgeon and said that they did a CAT scan on Dad and everything looked good...no sign of stroke and no bleeding on the brain!! He said, "Dr. Kim will be stopping by later to discuss his radiation treatment and chemo." We were so excited because at first he told us that would not be an option. Yeah! So to speed up the story big time. After Wednesday's surgery Dad was weak on his left side...no memory problems or anything but weakness. He couldn't walk without help and he couldn't walk very good with help. So he went to a rehab hosptial for 2 weeks so he could receive plenty of OT and PT. He went home walking pretty good. He continued to get stronger as he took Temodar and radiation. I will speed up the story majorly now. The past 9 months were really good. He was driving, visiting friends, camping, doing normal everyday activities. He was tired a lot, but naps helped that. His last MRI in June and October showed the tumor was shrinking. Sometime after October the tumor began to get worse. Everything happend so fast again. On Wed. 12/6/06 Dad had his monthly appointment with his oncologist and his blood work was great and he said Dad looked good and would began his 9th round of Temodar that Friday. Dad started his chemo but Mom told me that it seemed to drag him down more than usual. Then on Wed. 12/13 Dad had his 4 month check-up with his radiation oncologist. He said Dad was doing good and not to come back for 7 months. What good news. By that Friday 12/15/06 he was dragging his right leg again...........by Saturday he could hardly walk. So I called his radiation oncologist and he thought it was brain swelling from the chemo and ordered an RX for Decadron 4mg twice a day and told us to get started on it now. So we did. By Sunday morning my mom and I felt something wasn't right so I called his doctor again to see if he would see my dad either that Sunday or Monday. He said sure bring him down at 8:30 Monday morning and he told us to increase the Decadron up to 3 a day. He thought Dad's strength was the same as 12/13 and didn't see any reason to do anything. Dad had his regular 3 month MRI scheduled for 12/29 and his doctor saw no reason to move it up earlier. In my heart I thought that was a mistake, but my Dad said he knows more than me. By Wedneday morning I couldn't take it anymore (I went ahead and stayed home that week from work....I am a teacher so I had sick days) and I called his oncologist to see if he would see dad that day. He said yes and we took him down. He came in and looked at Dad and told us that he was going to stop the Temodar because the tumor is getting worse (without even doing a MRI) he said there were a couple of chemo options but the quality of life isn't good and he wouldn't do it if it was him. Dad told him that he wanted to see his neurosurgeon. So the doctor left the room and made an appointment. The only problem was that he wouldnt' be able to see him until 1/8/07 because he was out of town. I asked him if we could go to Duke or somewhere else. He said yes, that he would help us in anyway that he could if we wanted to go somewhere else. I asked him about Avastin again......( I asked him about it in Oct. and Aug.) he said that Dad would have to be on a clinical trial to get that). That evening Dad asked me if I was going to give up and I said, "no". I asked him if he was and he said, "no I am not." On Thursday we received a phone call from Dad's neurosurgeon's office and they told us that his partner would be willing to see Dad on Friday to get things ready for when his doctor gets back from out of state. On Thursday Dad got his MRI and we had to get a copy to take to see the neurosurgeon on Friday. The neurosurgeon reviewed the MRI and came in to see us. He told us that there were a few more spots on the MRI and he didn't know if it was radiation necrosis or more tumors and the tumor was inoperable. Dad told him that he still wanted to see his neurosurgeon when he came back from out of town. We left and I thought.......I am not going to give up.

When Dad was diagnosed with GBM I started researching it on the Internet. I found it helped me to read GBM survivor stories. I remember reading David Bailey's survivor story and he talked about Duke and Dr. Henry Friedman. He also listed Dr. Friedman's pager number on the Internet. So I saved it. I asked my dad if he minded if I paged him and talked to him. He told me that he didn't mind.......I would have paged him no matter what though! :) I paged him Friday evening and he called me back. I was on my cell phone and when he called it went straight to voice mail instead of beeping in and I missed his call. I paged him back then. He called me at 8:06 the next morning. I couldn't believe it. He told me to send Dad's last two MRIs, pathology slides, and medical records. I thanked him and I thanked God. I had to wait until Tuesday to gather the information because of Christmas being on Monday. I did and we send them overnight by FedX. I called the Preston Robert Tisch Brain Tumor Center @ Duke Thursday morning to see if they received everything and they had. Thursday afternoon Steve Silverman PA-C called me back to see what they could do for Dad. He was so caring and nice. So we made an appointment to come out the next week. So I called my school and got lesson plans ready since I would be missing another week of school. We left on Sunday for our trip to N. Carolina. I was excited to see how they could help Dad. I was praying for Avastin. We met with Steve Silverman PA-C on Tuesday and he was great. He gave Dad a physical........the most important thing he said to us was that he will not give up on my dad.........he said he wouldn't give up hope. So that made us all happy. He took all the time we needed to answer all of our questions. He kept asking us if we had any more questions too. Then we met with Dr. Desjardins...she is Dad's doctor. She was wonderful. She was so kind and she explained everything so well. She told us that she was going to start Dad on CPT-11 and Avastin. I was so happy. She went over everything with us and told us how it would work. She wanted treatment to start the following week. They explained that they would call Dad's local oncologist to see if he would give Dad the treatment. On Wednesday we met with Dad's nurse which we would call every week to keep her informed on how Dad was doing, and we met with a couple of social workers. Everyone was very nice! I can' t say enough about Duke. Anyway.........we found out that Medicare wouldn't cover the $29,000.00 treatment in IN.......I don't have the energy to go into that now so I am going to skip over the insurance issue because we are going to find a way to treat my dad no matter what. Steve told us to make an appointment to see Dad's local oncologist on Friday or Monday. We had an appointment on Friday. Steve wanted the treatment to start the next week. It had too....Dad's tumor was getting very aggressive. Dad's doctor agreed to give us the treatment. Dad received his first treatment that took a little over 5 hours yesterday. He did great. He didn't get sick or anything and he went through the drive thru on the way home at Steak and Shake and he ate all evening before he went to bed! I am so grateful for that. I am concerened about my Dad's left side. It is still weak. Mom is having home heath care to come in and help, because my dad is 6'6 and she is 5' 1/1/2 . Steve ordered Dad to have outpatient OT and PT but since home health care was coming he had to get his therapy at home until he builds up enough strength. Last year Dad started his OT and PT sooner, but due to everything like travel he can't start it until next week. The therapists came and evaluated him today. I pray everything will come back. My question is how long does it take the Avastin and CPT-11 to kick in so we can "see" that it is working. Dad doesn't get his MRI until 6 weeks and we send it to Duke. Then we go back to Duke in 3 months. I would like to know about some positive outcomes from CPT-11 and Avastin. I know that it doesn't work on everyone, but I pray that it does help my Dad. He tolerated the Temodar very well. If anyone can help I would appreciate it. Please don't reply with any negative stories. I don't want to read about that right now....I can't handle it. I amalready well aware of what can happen with this terrible disease.

God Bless,

Carrie

rthwyatt
Posts: 1
Joined: Jan 2007

Hello, My mom just found out on Jan 3, 07 that she has gliobastoma multiform (gmb) her stage IV. They were able to remove all the tumor. They are going to start her with the radiation on Jan 24th with Temodar. They are telling us they will not operate on her again that this will grow back. They are giving her 6 month to 1 year to live. What is CPT-11 is this a new drug.
Trish

boubre
Posts: 1
Joined: Jul 2006

My mom was also diagnosed with GBM stage 4 in July. We had surgery and they removed over 95% of the tumor. We went through the radiation and taken Temodar. Everything was going well but she had a bad bladder infection which was caused by a hole in her colon so we were not able to take the chemo for 2 months until now. We had a MRI done and her tumor grew back to the same size as it was before her surgery. I had mentioned to her Dr about the Avastin and she may put her on it but I was hoping you could tell me how your father was doing with it. I know this is hard on you for I feel what you are going through as well. My mom moved in with me after her surgery and I am her primary care giver. My sister comes over and helps out so that is a plus. It has been like a roller coaster but I have been doing my research as well to find anything or anyone that would help her. I hope everything is going well for your father!

Thanks,
Beth

cnall
Posts: 2
Joined: Mar 2005

Carrie,
As you know, at Duke there is Hope!

My husband was diagnosed in December of 2004 with a GBM. We live in Chattanooga, TN, & fortunately had one of THE premier neurosurgeons in the area on call the night he was diagnosed. Did a total resection, chemo & radiation here & then on to Duke for their expertise.

My husband did the Temodar, CCNU & CPT-11 protocal for the first year. No problems at all! In 2006 until April 2007, he is taking Tamoxifen. Again, no problems at all. He works out 3 times a week (treadmill, free weights) and hasn't missed a day of work since his surgery in Dec. 2004.

We feel very blessed that we have the doctors,nurses and researchers at Duke & here in Chattanooga fighting so hard for us and for a cure!

Always remember, there is hope! Don't give up and don't look at old statistics or any statistics for that matter. There are many, many survivors!

We we very fortunate, too, in that none of the doctors ever gave us anything but hope. In fact, when we left the hospital, our neurosurgeon, Dr. Gallagher, said to me, "There is always hope." And, there is. Hang in there!

Sharing hope,
Carol

vacelizabeth
Posts: 1
Joined: Mar 2007

How is your dad doing on the CPT11/avastin? My husband has been on it since August 06, and has had some shrinkage, and all stable MRI's. He was DX 1/4/06 with GBMIV inoperable, left motor track.
Laurie

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