Tumor growth/Avastin--can he go to college, work?
cindysuetoyou
Member Posts: 513
David and I are in Maryland at the National Institutes of Health. We received the all the test results earlier today at NIH. They were not what we wanted to hear. The tumor increased in size--approximately 25% increase while on the experimental chemo, Sutent. The increase was enough that David will no longer do this clinical trial at NIH. Well, we didn't want to stay on the clinical if it wasn't working for David. So we will use a more conventional weapon/chemo.
NIH recommends that we use Avastin. We are hopeful that it will stabilize or even shrink the tumor.
David had another seizure (the third one now) the first night we were here in Maryland at the hotel. I had stepped into the bathroom, and David was looking up restaurants online while he was lying propped up on the hotel bed. When I came out of the bathroom, he was seizing. He was still lying on the bed and he was conscious during the whole thing, and he could answer my questions. I don't know much about seizures but it was definitely not a grand mal. It lasted less than a minute but it was very unpleasant and it bothered and concerned both of us. I called NIH and they had David double his anti-seizure medicine.
Between this new seizure and the horrible headache that put David in the ER last week, we agree with the doctors…we need to give clinicals a rest for now and use something that is much more likely to have the expected results. But like I said to David, if we hadn't given at least one clinical a try, we would always wonder….what if…??
Another thing to really thank God for…all of David's cognitive tests totally check out. The doctor asked David the memory questions from the prior trip…."Remember these three things…a red rubber ball, a something, something (I don't remember haha) and a purple banana." That was over two weeks ago that the doctor told him what to remember, and David remembered all three without any problem. Plus the whole barrage of mental, physical, reflexive and coordination tests all checked out 100%. They said he is perfectly healthy….except for the tumor. It's a great thing to be in such good shape, starting a new treatment program….that's a blessing from God that David and I do not take lightly!!!! Thank you, God!!!
So it's back to OHSU. I called them this afternoon and gave them a head's up. I'm apprehensive that they will not jump on this as fast as we want them to do it. Like hangups on whether or not they agree with using Avastin, etc. They already told me that they need to get insurance approval before they start treatment. I am sure you can imagine the emotion that stirs up in me! I told them to do whatever it takes to get approval…pick up a phone and call the insurance company if that's what it takes. We want to start Avastin next week. What can we expect with Avastin? Will David be really sick? The doctors say Avastin is usually well tolerated, but I don't know what that means. Will he be able to go to college, work part time? Walk a lot? He can't drive since he's had seizures....
We have nothing to say but good things about our experience at NIH. They were just absolutely incredible to us. They treated us efficiently, professionally, and compassionately. I never had any doubt that David's best interests were of paramount importance to them. We will still be seen by the doctors at NIH, and they will confer with OHSU about David's treatments. We will fly back in six weeks, and then every two months.
There is still the possibility of another clinical trial at NIH, down the road, but I don't know how I feel about that. The doctors would not stop using Avastin if it's working, so if we did do another clinical, it would be because Avastin wasn't working. But still, it's something to keep in mind.
So that's where we are at today. This is not the news I wanted to share. But….God is good, all the time, and He never changes. He remains faithful and worth our trust, no matter where this road takes us.
Please keep David in your prayers.
Love and blessings,
Cindy in Salem, OR
NIH recommends that we use Avastin. We are hopeful that it will stabilize or even shrink the tumor.
David had another seizure (the third one now) the first night we were here in Maryland at the hotel. I had stepped into the bathroom, and David was looking up restaurants online while he was lying propped up on the hotel bed. When I came out of the bathroom, he was seizing. He was still lying on the bed and he was conscious during the whole thing, and he could answer my questions. I don't know much about seizures but it was definitely not a grand mal. It lasted less than a minute but it was very unpleasant and it bothered and concerned both of us. I called NIH and they had David double his anti-seizure medicine.
Between this new seizure and the horrible headache that put David in the ER last week, we agree with the doctors…we need to give clinicals a rest for now and use something that is much more likely to have the expected results. But like I said to David, if we hadn't given at least one clinical a try, we would always wonder….what if…??
Another thing to really thank God for…all of David's cognitive tests totally check out. The doctor asked David the memory questions from the prior trip…."Remember these three things…a red rubber ball, a something, something (I don't remember haha) and a purple banana." That was over two weeks ago that the doctor told him what to remember, and David remembered all three without any problem. Plus the whole barrage of mental, physical, reflexive and coordination tests all checked out 100%. They said he is perfectly healthy….except for the tumor. It's a great thing to be in such good shape, starting a new treatment program….that's a blessing from God that David and I do not take lightly!!!! Thank you, God!!!
So it's back to OHSU. I called them this afternoon and gave them a head's up. I'm apprehensive that they will not jump on this as fast as we want them to do it. Like hangups on whether or not they agree with using Avastin, etc. They already told me that they need to get insurance approval before they start treatment. I am sure you can imagine the emotion that stirs up in me! I told them to do whatever it takes to get approval…pick up a phone and call the insurance company if that's what it takes. We want to start Avastin next week. What can we expect with Avastin? Will David be really sick? The doctors say Avastin is usually well tolerated, but I don't know what that means. Will he be able to go to college, work part time? Walk a lot? He can't drive since he's had seizures....
We have nothing to say but good things about our experience at NIH. They were just absolutely incredible to us. They treated us efficiently, professionally, and compassionately. I never had any doubt that David's best interests were of paramount importance to them. We will still be seen by the doctors at NIH, and they will confer with OHSU about David's treatments. We will fly back in six weeks, and then every two months.
There is still the possibility of another clinical trial at NIH, down the road, but I don't know how I feel about that. The doctors would not stop using Avastin if it's working, so if we did do another clinical, it would be because Avastin wasn't working. But still, it's something to keep in mind.
So that's where we are at today. This is not the news I wanted to share. But….God is good, all the time, and He never changes. He remains faithful and worth our trust, no matter where this road takes us.
Please keep David in your prayers.
Love and blessings,
Cindy in Salem, OR
0
Comments
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Hi
My daughter handled the Avastin very well. The first couple of treatments she was tired but, after that she was fine. She went to school and all the things a 13yr old girl does.I think like with any medication, your body needs to get used to it. Not sure if it is all doctors but, before the Avastin treatment they would give my girl zofran for nausea. good luck and I will continue to pray for you and your boyfriend0 -
Cindy
My heart goes out to you.0 -
Thank you for keeping us
Thank you for keeping us updated. And so sorry about the tumor growth and that you will be ending the trial. But I want to thank you for your willingness to go the clinical trial route. Even if you have to quit, no doubt his experience has contributed to the knowledge of how to treat this awful disease.
I'm curious, did his doctor bring up the topic of going for a clinical trial? It's never been mentioned for our son (dx 4-13-11 with AA3/GBM)0 -
I will continue to pray for syour son Davidconnsteele said:Thank you for keeping us
Thank you for keeping us updated. And so sorry about the tumor growth and that you will be ending the trial. But I want to thank you for your willingness to go the clinical trial route. Even if you have to quit, no doubt his experience has contributed to the knowledge of how to treat this awful disease.
I'm curious, did his doctor bring up the topic of going for a clinical trial? It's never been mentioned for our son (dx 4-13-11 with AA3/GBM)
I will continue to pray for your son David and strength for you and your family. I appreciate you keeping us updated. He has the same type tumor as my husband, who is almost on his last 12 month cycle of chemo. When I read David's situation, it scares me. I pray my husband will continue to do well. He was dx 7/2/11. His last radiation treatment was 9/15/11. He has had a little muscle weakness but that's all. Once again, remember the Serenity prayer!
God Bless!0 -
Avastin
Sorry to hear that the clinical trial didn't work for you, but I agree, you have to try or you'll always wonder. My husband did really well on the Avastin...no side effects whatsoever, and he had a great response to it initially (tumor shrinkage). Actually, the MRI's and PET scans show that there is NO TUMOR activity in his brain at all, which is GREAT. Unfortunately, he has developed radiation necrosis (NOT GREAT!) He continues to take the Avastin every two weeks for radiation necrosis, which is pretty severe in his case and has caused major memory/confusion/disorientation. I keep hoping that something will spark again and I will have my husband back, but after two weeks of adjusting meds, I'm not sure that this new development isn't worse than the cancer.0 -
Thank you!sadinholland said:I will continue to pray for syour son David
I will continue to pray for your son David and strength for you and your family. I appreciate you keeping us updated. He has the same type tumor as my husband, who is almost on his last 12 month cycle of chemo. When I read David's situation, it scares me. I pray my husband will continue to do well. He was dx 7/2/11. His last radiation treatment was 9/15/11. He has had a little muscle weakness but that's all. Once again, remember the Serenity prayer!
God Bless!
Thank you for your prayers and thoughts. I just posted a new comment about our insurance approving a new treatment---which I don't think David wants to try. Feeling a lot of turmoil...
I feel bad that David's situation scares you. I know what you mean, because I used to read posts written by people who had the same thing but were further down the road. Please remember that every single case is different, and every tumor is unique to the person who has it. And I had more than one oncologist tell me that the longer you go without a recurrence, the better your chances because it showed that your body was fighting it off.
Even though David has had a recurrence, he still is doing so good. He has some days when he doesn't feel great, but not very many days, and he's really in good shape. He's got a lot of fighting left to do!
Please hold on to hope and think on every positive thing you see in your husband's situation. I will be praying for both of you!
Love and blessings,
Cindy in Salem, OR0
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