Avastin already?? Too soon?

kate2kate

Hi,

My husband Dave was dx with a GMBIV in Nov 2011. He is 40. It is in-operable. His tumor is towards the back of the Corpus Callosum and it has tentacles and some tumor intertwined into the Corpus Callosum He is being treated at Yale New Haven Smilow Cancer Center and has gotten a second opinion from Dr. Gutin at Sloan Kettering. He has gone through 6 weeks of temodar and radiation which shrunk the tumor by around %50. He is now gone through 2 Cycles of 5/23 at 320mg temodar. during the first cycle the poor guy got hit with a stomach bug so they left the dose the same on the second round to make sure it was not the temodar.

This past Tue they did and MRI and the NO said that he had new enhancements, some parts of the tumor were more prominent. The tumor did not grow or shrink but there was a thickening in places. His NO said it could be Tumor growth or it could still be necrosis from radiation. He said that we are still in that window of time (feb 1 we finished) that it could be the radiation. He said it is a 50/50 that it could be tumor. I could tell he was choosing his words carefully. I go to this NO for my tumor and have been seeing him for myself since 2006 So I know him pretty well. I have also told him that my husband mental status has been very fragile (it would have to be another post).

He asked my husband if he had any new symptoms and Dave told him that his legs and feet were tingling, he was numb under his arms and that he was having balance issues. His NO asked if fell and he said no. I suggested he elaborated on the balance so Dave stood and was describing about being in the shower Dave stumbled right there in front of his NO. I did not know about these symptoms until the morning of the appointment. I have been getting a lot of "I thought I told you" and then a blank stare.

Dave's NO decided to put him on Avastin. If those enhancement (spots?) go away then he can stop Avastin if not he will probably keep him on Avastin. He is also raising the Temodar dose by 25%.

I tend to try to read between the lines. His NO tries to keep things sounding like we are having treatments and going forward and thats that which what Dave needs. (I need the truth but can't really ask hard questions in front of Dave. I know that I could call his NO but sometimes I don't have a specific question.) He never gave Dave the you have x months to live. And I don't think he wants to break whatever spirit Dave has. Dave does not have a positive attitude and he is not a fighter. and we have an 8 year old son.

So here are some of the conclusions I have come too. He has his age helping. But it being intertwined into his Corpus Callusom and being in-operable is not a good thing.
Having the tumor respond to Temodar and radiation was a positive thing but with %50 still left this monster beast is not going anywhere. And now with new symptoms and adding Avastin already this is not a good sign either. Isn't Avastin used in worse case scenario. This is not good is it? Just by looking at him you would not know he is even sick. I am so hoping for a miracle.

So opinions from people who have greater knowledge than I?? Please be hard core honest.

Thanks for sharing and taking the time to read my post.
Katie wishing everyone the best.

Thanks,
Katie

Scottgri

I'm on Avastin
I've been on Avastin for almost a year and back to work and a normal life a year after my resection and Dx. Different situation as mine was operable. But, I wanted to answer your question about too soon as best I could....for me it was not a last ditch effort or sign I was in bad shape. As I understand it, Avastin will prevent/slow the tumor growth by preventing blood vessel formation by the tumor.

I have read of some good things coming out of UCal San Francisco (UCSF) with vaccines that teach your body to go after the tumor that might be worth looking into more detail on. Ask your NO about the latest on vaccines. I hope this helps!!!! I'm under the care of Duke University and doing great! I know they are different circumstances, but also wanted to share some hope.

cindysuetoyou

Avastin
Hi, Katie.

I too don't have the time to post much. I feel stretched thin with so much to do and take care of...you all know how it is.

Katie, it sounds like that was a hard doctor visit. I understand the difficulty of wanting to know the answers to hard questions and not being able to ask in front of our husband/son. For some reason, it's not easy to get the answers we need over the phone. I think that's because some of the information we receive is from non-verbal communication...body language, expressions, etc. I also tend to read between the lines.

I have found that the brain tumor doctors have dramatically different opinions on treatment options. For our NO, Avastin was a last line of defense. But it really depends on your NO. We went to NIH (National Institutes of Health) in Maryland last fall and they were really surprised that David wasn't already on Avastin. They definitely did NOT consider it a last ditch drug. I will quote them: "David deserves to be on Avastin. It has proven to be a good, durable drug in fighting brain tumors." I don't know what they meant by "deserves" and "durable" but they felt like Avastin would really help David. Our NO put Avastin off for as long as possible. I had my own personal (not based in fact) phobias about Avastin because when I first joined CSN when David was newly diagnosed, one of the first posts I read was about someone whose husband had hemorrhaged from taking Avastin. I've had a hard time shaking the feelings of fear that I have about Avastin.

Everyone pretty much told us that David would really feel a lot better when he took Avastin but I have not seen that happen. Apparently the majority of people who have good results when they do Avastin---David is just one of the few that it didn't dramatically help. But maybe he would be a lot worse right now if he wasn't doing Avastin....who knows....

By the way, David has had some improvement in his condition, and a few setbacks. (I don't think it's from the Avastin since we postponed the last two weeks of Avastin treatments.) We went and saw the diabetes doctor and we took David to that appt in a wheelchair. On the way home, out of a clear blue sky, he said, "How about sushi for lunch?" I was thrilled! So we went to our favorite sushi restaurant and David WALKED IN. We had to support him on either side, but still....the day before, he couldn't even move his legs in bed. He didn't eat much, but it was still a great time. Then the next day, he managed to go out for lunch with his brother. He has to have help walking, but he did better. Then the next day, I took him to my sister's house for coffee and a short visit. And his blood sugar went down so he can have an occasional Starbucks and an ice cream. These are huge things to me.....any little positive, no matter how small, makes me so happy. Even if it's just for the moment, I am still so grateful. He is having trouble again making it to the bathroom, but he is much more aware and cognizant of what is going on. He does funny stuff (odd, not ha-ha funny)...like he put his shoes on, then tried to put his socks on, and he gets dressed late at night....and puts his sunglasses on. But I can live with those kinds of things, even though they are hard. It's when he is spaced out and unresponsive, or in pain, that I get so full of despair.

We had to postpone two Avastin treatments because of that chest cold that David had. But he is going to do Avastin and chemo (carboplatin) on Tuesday. The last time he had that done, it was really hard on him. But I'm afraid to put it off any longer. I hate it...I feel like the chemo could kill him before the brain tumor. But if we don't do chemo....we just have to do it.

I think of you and your husband and your little boy often, and I'm praying for grace and strength for you to stay strong and be able to continue your fight.

Love, blessings, and peace to you,
Cindy in Salem, OR

ffgirl69

Scottgri said:

I'm on Avastin
I've been on Avastin for almost a year and back to work and a normal life a year after my resection and Dx. Different situation as mine was operable. But, I wanted to answer your question about too soon as best I could....for me it was not a last ditch effort or sign I was in bad shape. As I understand it, Avastin will prevent/slow the tumor growth by preventing blood vessel formation by the tumor.

I have read of some good things coming out of UCal San Francisco (UCSF) with vaccines that teach your body to go after the tumor that might be worth looking into more detail on. Ask your NO about the latest on vaccines. I hope this helps!!!! I'm under the care of Duke University and doing great! I know they are different circumstances, but also wanted to share some hope.

Avastin
Hello Everyone,

My husband was diagnoised in 2008 with Oligodendroglioma and had a rightside disection in July of 2008. He was on 6 weeks of radiation followed by 6 months of Temodar. He was good til 2011 when he had his reoccurence. It was spring and he once again went on his Temodar and they added Avastin to his care. He would take the Avastin every other week for 6 months and the on the off week he would take the Temodar. He had very little side effects and would only mis work the day he had the Avastin and that was only because he was too tired to go back to work.
Then they did a scan and saw that one tumor was gone and the other one had shrink so they took him off of the chemo and decided to give it three months to see where it would go. In December of 2011 he was diagnosied again saying that the one tumor had begun to grow again. Now we are in a holding pattern to get another MRI in July and see the NO and surgeon then. He was on Dexamethason for 2 years now and the NO is trying to wean him off of it but when the old doctor tried to to it he ened up having another seizure and that was only three months ago.
No his Creatin is high in the kidneys, the Adrenal gland is not producing and steriod and the live is not functioning properly. Oh and the blood pressure is way high. This all makes me a bit nervouse. He does have the missing chromosone and that is why he responded the first time to the chemo they said but now what and why didn't the other tunmor shrink. Oh and he has put on a lot of water weight and has a hard time sleeping. Any suggestions?
Connie

Concerned Spouse

cindysuetoyou said:

Avastin
Hi, Katie.

I too don't have the time to post much. I feel stretched thin with so much to do and take care of...you all know how it is.

Katie, it sounds like that was a hard doctor visit. I understand the difficulty of wanting to know the answers to hard questions and not being able to ask in front of our husband/son. For some reason, it's not easy to get the answers we need over the phone. I think that's because some of the information we receive is from non-verbal communication...body language, expressions, etc. I also tend to read between the lines.

I have found that the brain tumor doctors have dramatically different opinions on treatment options. For our NO, Avastin was a last line of defense. But it really depends on your NO. We went to NIH (National Institutes of Health) in Maryland last fall and they were really surprised that David wasn't already on Avastin. They definitely did NOT consider it a last ditch drug. I will quote them: "David deserves to be on Avastin. It has proven to be a good, durable drug in fighting brain tumors." I don't know what they meant by "deserves" and "durable" but they felt like Avastin would really help David. Our NO put Avastin off for as long as possible. I had my own personal (not based in fact) phobias about Avastin because when I first joined CSN when David was newly diagnosed, one of the first posts I read was about someone whose husband had hemorrhaged from taking Avastin. I've had a hard time shaking the feelings of fear that I have about Avastin.

Everyone pretty much told us that David would really feel a lot better when he took Avastin but I have not seen that happen. Apparently the majority of people who have good results when they do Avastin---David is just one of the few that it didn't dramatically help. But maybe he would be a lot worse right now if he wasn't doing Avastin....who knows....

By the way, David has had some improvement in his condition, and a few setbacks. (I don't think it's from the Avastin since we postponed the last two weeks of Avastin treatments.) We went and saw the diabetes doctor and we took David to that appt in a wheelchair. On the way home, out of a clear blue sky, he said, "How about sushi for lunch?" I was thrilled! So we went to our favorite sushi restaurant and David WALKED IN. We had to support him on either side, but still....the day before, he couldn't even move his legs in bed. He didn't eat much, but it was still a great time. Then the next day, he managed to go out for lunch with his brother. He has to have help walking, but he did better. Then the next day, I took him to my sister's house for coffee and a short visit. And his blood sugar went down so he can have an occasional Starbucks and an ice cream. These are huge things to me.....any little positive, no matter how small, makes me so happy. Even if it's just for the moment, I am still so grateful. He is having trouble again making it to the bathroom, but he is much more aware and cognizant of what is going on. He does funny stuff (odd, not ha-ha funny)...like he put his shoes on, then tried to put his socks on, and he gets dressed late at night....and puts his sunglasses on. But I can live with those kinds of things, even though they are hard. It's when he is spaced out and unresponsive, or in pain, that I get so full of despair.

We had to postpone two Avastin treatments because of that chest cold that David had. But he is going to do Avastin and chemo (carboplatin) on Tuesday. The last time he had that done, it was really hard on him. But I'm afraid to put it off any longer. I hate it...I feel like the chemo could kill him before the brain tumor. But if we don't do chemo....we just have to do it.

I think of you and your husband and your little boy often, and I'm praying for grace and strength for you to stay strong and be able to continue your fight.

Love, blessings, and peace to you,
Cindy in Salem, OR

Avastin
I am new to this post. First time I have ever done anything like this. My wife is 60 yrs old and was diagnosed in 2009 with lung cancer. They resected the tumor taking our part of her lung and 7 ribs. She had a clean bill of health until June of 2011. Her cancer had metasized to the brain. It was operable and removed and she received 5 doses of radiation. She again was fine until March of this year. She suffered a series of seizures and was diagnosed with radiation necrosis. the neurosurgeons at Slaon decided to operate to remove the necrosis and put her back on steroids. Unfortunately the recovery predicted is not forthcoming. the swelling and inflamation continue. They are now talking about using Avastin to combat the necrosis. On the second operation where they removed the necrotic tissue they biopsied the specimen ad said there was no tumor and are confident (at least as confident as any surgeon of doctor will admit to ) that it is necrosis. My wife has lost almost all left side mobility, suffers moderate incontinence, memory lapses and erratic behavior. I am hoping that the Avastin will reverse a good portion of this. I have been following numerous threads about the durg and the information seems to be conflicting at best. Any new news out there regarding the success of Avastin on necrosis?

sippican

too soon for avastin?
My husband was diagnosed with GBM in Nov 09. We did a clinical trail at Duke for immunotherapy but after 22 months he had a recurrence with another surgery and the SOC radiation/temodar treatment again. We are about to start another clinical trial for XL765 at UAB-a drug that inhibits tumor growth. We were hoping for better results from Duke but all things considered he is now at 30 months survival. Our NO has suggested we keep Avastin in our "back pocket" as it restricts the clinical trials you can participate in. he does believe it is helpful but mainly as a management drug vs. anything that would actually "cure" this terrible beast. Please don't hesitate to get your affairs in order-even if you have years more together it will ease the stress to know those things are handled...I have been trying to get all of our things in order-my husband has taken no interest-it is up to you to protect yourself and your children for the future as hard as it may be to do so. Good luck and keep the faith-miracles do happen!!