Avastin failed- unfortunate for us-Need your suggestions
Meantime, I am reseraching for our best next step. I know none of us have any clear cut answer. I am looking for your opinions,suggestions, and wisdom to share with me. I believe your sharing will give me some insights to at least participating and discussing our options during our next visit with our NO. I have the feeling that our NO also was hoping for Avastin to work sometime for Jacob and he is not sure about the next step.
I also believe, the experiences we have as patients and caregivers can play a huge role in the decision making process. Sometimes, I feel like I know more than the NO about the treatment protocols to follow after reading all of your experiences(just kidding..).
It gives me a lot of comfort that I am not alone and I have you all as support.
Raani
P.S. The only good thing came out of this setback is the following theory from the surgeon which I hope to be true:
An acute hemorrhage kills the tumor in the area it is coming out of. This is a very good thing, because that is a tumor site the surgeon was not able to approach during the surgery last month, and the blood should be reabsorbed by the brain over the next few days to a week
Comments
-
choices
Dear Raani,
Choices can be very frightening. At least to me they are. Because I feel like I cannot make a mistake in choosing the right treatment for my sister. There are no second chances. But I also believe in taking a chance on a clinical trial; it can be now when you have a drug that failed (avastin) or in my situation (my sister has a stable disease). Let's face it: the current traditional options available for AA3 are nor good enough.
Go on clinicaltrial.gov
There you can search for all the studies regarding recurrent AA3. On the top of my mind (and I have not searched recurrence in AA3 as much as newly diagnosed aa3) I think of the trial Cindy's son is in with the intraarterial chemo at Seattle, or the virus trial delta24 at MD anderson, etc...
Let us know what you decide to do.
J.0 -
Hi, Raani.
I'm so sorry that you and Jacob are facing this setback. Seizures and bleeding in the brain are terrifying! I'm so glad that Jacob is stable now. In our experience, we have found that it is really remarkable how the brain can recover from some pretty traumatic things. I am praying that Jacob continues to recover from the seizure and the bleeding.
You mentioned that your NO thought that the bleeding caused the seizure, and the surgeons thought the seizure caused the bleeding...did anyone think that Avastin caused the bleeding and the seizure? I don't know much about Avastin and I am trying to learn more.
I wish I knew of a good clinical trial that would fit your needs. The clinical trial that David is on is for recurrent anaplastic oligodendrogliomas and mixed oligoastrocytomas. They are not accepting AA3s.
Did you check this website? http://www.cancer.gov/clinicaltrials
When we first found out about David's recurrence in July, our insurance denied his participation in the BBBD clinical at OHSU. We contacted NIH (National Institutes of Health) in Maryland. They were wonderful...I can't say enough good things about them. They also paid for all of David's treatments....everything, every test, every medicine, everything. They even paid both of our airfares and our hotel and gave us a food allowance and arranged transportation for us. Unfortunately, the clinical we participated in didn't work, but I would go back there in a flash if they had a clinical available for David to try that looked promising.
Are you currently living in India? I don't know if that will complicate your ability to get treatment at NIH but I'd still look into what they have to offer.
Please keep us updated on your research and what you and Jacob decide to do next.
Blessings, love, strength, and peace to you and to Jacob,
Cindy in Salem, OR0 -
Setback
Raani,
Sorry to hear about the setback with your husband. I will continue to keep you both in my prayers!
Michelle0 -
Jacob is in rehab now. He is doing fine with his strength, but his cognitive functionality is affected by the bleeding, as it seems like. Our NO came to visit us to discuss about the next treatments. I asked about clinical studies and he said that Jacob’s bleeding is a big isssue.He said there are recent studies that favor rdiation again. Jacob’s radiation was in 1998 and the long gap is a plus. He thinks there is a big hope in this approach for Jacob. I like his explanation that there is not much risk in it, however, not sure about a repeat that I have been told all these years that Jacob cannot have another radiation. I do not know what to do. NO is blaming Avastin for the bleeding (Cindy, when I said the bleeding caused seizure, the NO implied Avastin caused the bleeding. also, how did you know I am originally from India, my accent came through my writings?lol!We live in MN for 25 years.)also Jacob actually has Oligodendroglioma 3, I wrote AA3 thinkimg all these comes under the same bucket putting weight on the grade 3 status,sorry.chicken2799 said:Setback
Raani,
Sorry to hear about the setback with your husband. I will continue to keep you both in my prayers!
Michelle
NO is going to take another MRI next week to see any concerns for radiation. It seems like we are heading towards it…
Raani0 -
RaaniRaani01 said:Jacob is in rehab now. He is doing fine with his strength, but his cognitive functionality is affected by the bleeding, as it seems like. Our NO came to visit us to discuss about the next treatments. I asked about clinical studies and he said that Jacob’s bleeding is a big isssue.He said there are recent studies that favor rdiation again. Jacob’s radiation was in 1998 and the long gap is a plus. He thinks there is a big hope in this approach for Jacob. I like his explanation that there is not much risk in it, however, not sure about a repeat that I have been told all these years that Jacob cannot have another radiation. I do not know what to do. NO is blaming Avastin for the bleeding (Cindy, when I said the bleeding caused seizure, the NO implied Avastin caused the bleeding. also, how did you know I am originally from India, my accent came through my writings?lol!We live in MN for 25 years.)also Jacob actually has Oligodendroglioma 3, I wrote AA3 thinkimg all these comes under the same bucket putting weight on the grade 3 status,sorry.
NO is going to take another MRI next week to see any concerns for radiation. It seems like we are heading towards it…
Raani
Glad to hear that things have stablized. I understand your concern about Jacob going through another course of radiation.
Our son, who is now 34, had his first brain cancer at the age of 8. At that time, he had radiation to the brain and spine, with a boost to his cerebellum (back of the head where the tumor was located). It was hard on him then...lost lots of weight, but he bounced back after that. While he had several permanent long term effects of the radiation, he went on to live a productive, independent life.
Jump ahead 26 years, to April 2011 and he was diagnosed with a second type of brain tumor, AA3. It recurred in the same spot where he had the previous radiation boost and the docs are pretty clear that this second brain cancer was caused by the radiation he had to that spot 26 years ago. His radialogist oncologist talked to us about having radiation again to the brain. He said there was a chance for radiation necrosis and we could opt out if we wanted. He did recommend it, but was uneasy about giving him the standard full dose. He conferred with two other docs: one was his mentor at Mass General and another at Johns Hopkins, who both agreed that some radiation was needed...but at a reduced dose... to keep the cancer controlled. So we opted for the radiation again at a reduced dose from the standard treatment and also just to the tumor location....not whole brain.
I have to say, the radiation was very hard on him. Following surgery and before he started this second bout of radiation, he didn't have major deficits...maybe just a slight problem with his balance and fine motor. He even went to work for a few half days. But once the radiation started, he went down hill fast. It got so bad that at one point, they wondered if it was tumor progression instead of radiation effects and were considering calling in Hospice. He was put on 24 mg of Decadron, which helped some, so his doc said it must be the radiation effect and not tumor.
That was last June, and I think it's taken that long for some of the cognitive effects of radiation to finally wear off (or as our son's NO says..for the dust of radiation to clear away). He still has major deficits...including balance and fine motor and speech.
It was a hard decision. I told our son's NO that if I had known what the radiation was going to do to him when he was 8, I would never have agreed to it. But he was adamant that if we hadn't had the radiation at 8, he wouldn't be here today. So thay is why we reluctantly agreed to this second radiation. But he's never been the same since his second radiation. Of course, some is probably the cancer...he has never had a clear MRI since his surgery, in fact a new one showed up at the last MRI. So it could be that.
I feel for you and the decisions you have to make. We all do the best we can. Every case is different. As for us, I think knowing what we know now, I would not have opted for the second radiation, but our son wanted to fight it with everything, so we had to honor that.
Take care,
Connie0 -
Thank you Connieconnsteele said:Raani
Glad to hear that things have stablized. I understand your concern about Jacob going through another course of radiation.
Our son, who is now 34, had his first brain cancer at the age of 8. At that time, he had radiation to the brain and spine, with a boost to his cerebellum (back of the head where the tumor was located). It was hard on him then...lost lots of weight, but he bounced back after that. While he had several permanent long term effects of the radiation, he went on to live a productive, independent life.
Jump ahead 26 years, to April 2011 and he was diagnosed with a second type of brain tumor, AA3. It recurred in the same spot where he had the previous radiation boost and the docs are pretty clear that this second brain cancer was caused by the radiation he had to that spot 26 years ago. His radialogist oncologist talked to us about having radiation again to the brain. He said there was a chance for radiation necrosis and we could opt out if we wanted. He did recommend it, but was uneasy about giving him the standard full dose. He conferred with two other docs: one was his mentor at Mass General and another at Johns Hopkins, who both agreed that some radiation was needed...but at a reduced dose... to keep the cancer controlled. So we opted for the radiation again at a reduced dose from the standard treatment and also just to the tumor location....not whole brain.
I have to say, the radiation was very hard on him. Following surgery and before he started this second bout of radiation, he didn't have major deficits...maybe just a slight problem with his balance and fine motor. He even went to work for a few half days. But once the radiation started, he went down hill fast. It got so bad that at one point, they wondered if it was tumor progression instead of radiation effects and were considering calling in Hospice. He was put on 24 mg of Decadron, which helped some, so his doc said it must be the radiation effect and not tumor.
That was last June, and I think it's taken that long for some of the cognitive effects of radiation to finally wear off (or as our son's NO says..for the dust of radiation to clear away). He still has major deficits...including balance and fine motor and speech.
It was a hard decision. I told our son's NO that if I had known what the radiation was going to do to him when he was 8, I would never have agreed to it. But he was adamant that if we hadn't had the radiation at 8, he wouldn't be here today. So thay is why we reluctantly agreed to this second radiation. But he's never been the same since his second radiation. Of course, some is probably the cancer...he has never had a clear MRI since his surgery, in fact a new one showed up at the last MRI. So it could be that.
I feel for you and the decisions you have to make. We all do the best we can. Every case is different. As for us, I think knowing what we know now, I would not have opted for the second radiation, but our son wanted to fight it with everything, so we had to honor that.
Take care,
Connie
Connie,Thank you for taking time to help me out with your experience. You made me to think again about the repeated radiation!!.
Our NO is very caring, However, I have to remember that he got so many patients and Jacob is just one of them. He came to ICU and said, “I am so happy to see Jacob talking, I was expecting to see Jacob hooked in to a ventilator after this kind of bleed”. My son sees it as he trying to comfort us, but, I have been thinking, how casually he said that and if these kinds of things are possibilities, why he did not warn us or explained as risks? In addition, I am noticing how casually they say to give pain med as often as Jacob wanted without any concerns in their voice (luckily, Jacob does not need much pain med).
Now talk about Jacob now, He is very week cognitively. He responds if I ask something, but not initiating anything. Another thing funny as it sounds; he just started counting from 1,2,3…like that. Sometime he continues up to 100 and more, NO says all these are result of bleed and tumor. Today I noticed, if the Physical therapist ask him to stop he stops, if I ask him to stop, he keeps counting…... so many changes to him this week…I am praying for wisdom to make the right decision for my husband.
I think the blood products in Jacob’s brain caused all the trouble for him. One infusion of Avastin made his tumor shrink signifcally.In our NO’s words Avastin was doing too good of a job for Jacob which caused a bleeding, whatever it means!. Jacob was feeling and doing very good while on Avastin. Unfortunate for us that Avastin caused bleeding. Well, I guess I have to keep looking for new doors to open without wasting time on thinking about the closed doors.
They are going to take an MRI tomorrow. I will see if I can ask NO for some time to do couple more consultation with other neurooncologists.
Thanks again Connie and hope David is doing fine with CCNU.
Will keep in touch,
Raani0 -
Hi, RaaniRaani01 said:Thank you Connie
Connie,Thank you for taking time to help me out with your experience. You made me to think again about the repeated radiation!!.
Our NO is very caring, However, I have to remember that he got so many patients and Jacob is just one of them. He came to ICU and said, “I am so happy to see Jacob talking, I was expecting to see Jacob hooked in to a ventilator after this kind of bleed”. My son sees it as he trying to comfort us, but, I have been thinking, how casually he said that and if these kinds of things are possibilities, why he did not warn us or explained as risks? In addition, I am noticing how casually they say to give pain med as often as Jacob wanted without any concerns in their voice (luckily, Jacob does not need much pain med).
Now talk about Jacob now, He is very week cognitively. He responds if I ask something, but not initiating anything. Another thing funny as it sounds; he just started counting from 1,2,3…like that. Sometime he continues up to 100 and more, NO says all these are result of bleed and tumor. Today I noticed, if the Physical therapist ask him to stop he stops, if I ask him to stop, he keeps counting…... so many changes to him this week…I am praying for wisdom to make the right decision for my husband.
I think the blood products in Jacob’s brain caused all the trouble for him. One infusion of Avastin made his tumor shrink signifcally.In our NO’s words Avastin was doing too good of a job for Jacob which caused a bleeding, whatever it means!. Jacob was feeling and doing very good while on Avastin. Unfortunate for us that Avastin caused bleeding. Well, I guess I have to keep looking for new doors to open without wasting time on thinking about the closed doors.
They are going to take an MRI tomorrow. I will see if I can ask NO for some time to do couple more consultation with other neurooncologists.
Thanks again Connie and hope David is doing fine with CCNU.
Will keep in touch,
Raani
Hi, Raani.
I just wanted to tell you that my son David did all kinds of weird things when he had edema and swelling in his brain. He did a lot of what they called "purposeless random repetitive motions." He would tap things, he would turn his phone on and off without a break, or wipe off the hospital tray over and over and over again, things like that. He was really messed up and I didn't think that he would recover from it. But he's recovered almost fully as far as cognitive skills go. He has a little bit of short term memory loss, I think, but it's so minor that it could just be from the stress of his situation. I can't remember much of anything these days, myself......Physically, he is still really, really weak and shaky but I think that's from all the medicine that he has to take right now, especially the seizure medicines.
So hopefully Jacob will recover from the bleeding in his brain. Everyone is different and it's hard to know for sure...even the doctors don't know for sure....the brain is very delicate but its's amazing how it will compensate and how it can heal and begin to function like it normally does.
Another thing I have learned to deal with....our NO has been hard for me to take at times. He can be blunt and impatient, and he's not always available to answer my questions, but I have a few friends who are nurses, and they told me not to pick a doctor based on his personality and "bedside manner" but to pick one based on his skill and knowledge. Some of the most brilliant doctors are socially inept. I think our doctor is the best in the Northwest and I trust him, but it's taken me a long time to feel that way about him. When David was so sick from the BBBD and then all this trouble with cellulitis and the abscess and the blood clots and then that seizure, our NO came over every day to the hospital building where we were at to check on David and I could see the concern on his face. Sometimes I think the doctors see so much pain and suffering that they just don't know what to say sometimes.
I think it's a good idea to get some other opinions from other neurosurgeons. I hope that they have some good ideas and suggestions for a treatment plan for Jacob. I will keep on praying for you and Jacob, and I will have you on my mind and heart, and in my prayers. Please keep posting and letting us know how you and Jacob are doing.
Love and blessings,
Cindy0 -
oops, forgot...Raani01 said:Jacob is in rehab now. He is doing fine with his strength, but his cognitive functionality is affected by the bleeding, as it seems like. Our NO came to visit us to discuss about the next treatments. I asked about clinical studies and he said that Jacob’s bleeding is a big isssue.He said there are recent studies that favor rdiation again. Jacob’s radiation was in 1998 and the long gap is a plus. He thinks there is a big hope in this approach for Jacob. I like his explanation that there is not much risk in it, however, not sure about a repeat that I have been told all these years that Jacob cannot have another radiation. I do not know what to do. NO is blaming Avastin for the bleeding (Cindy, when I said the bleeding caused seizure, the NO implied Avastin caused the bleeding. also, how did you know I am originally from India, my accent came through my writings?lol!We live in MN for 25 years.)also Jacob actually has Oligodendroglioma 3, I wrote AA3 thinkimg all these comes under the same bucket putting weight on the grade 3 status,sorry.
NO is going to take another MRI next week to see any concerns for radiation. It seems like we are heading towards it…
Raani
Hi, Raani.
I forgot to mention that I didn't pick up on your accent lol! I just remembered that you had mentioned the beauty of India and that you would like me to see it some day. I meant to tell you that my daughter spent a little time in India about 5 years ago. She went with a group from our church, and they visited New Dehli, Chennai, and Dehradum. They spent some time at a college that our church helps to support financially called the New Theological College or NTC (Luther W. New Jr. Theological College). They also were there for the grand opening of a restaurant called "Sparky's" in Chennai. We knew the owner a little bit...a man named Thom Petty. We just found out that he recently passed away from bladder cancer. Really upsetting news....
My daughter really loved India. Maybe someday I will go there for a visit too....do you get to back to India very often?
Love and blessings,
Cindy0
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