AVISTON?

TAMMY S

I have been in temador the last few months. 5 days on 23 off. My Mri's havebeen coming back clean. My MD wants me to try Aviston. I am alittle confused as to why he wants this change when everything is OK. Although I am gettng pretty nauseous and extremly tired from the Temadar. Pros and cons to Aviston?? Also, anyone ever take Nuvigil?

4theloveofmysis

avastin
Avastin cuts the blood supply to the tumor. If it doesnt have a blood supply it cant grow. Did they get all of your tumor? My sister had avastin twice but got an infection in her port and went septic so all treatments went on hold. They couldnt operate on her GBM 4 so her treatment is radiation temador and avastin. Hoping to get back on tract here soon. She just got out of the hospital.

TAMMY S

4theloveofmysis said:

avastin
Avastin cuts the blood supply to the tumor. If it doesnt have a blood supply it cant grow. Did they get all of your tumor? My sister had avastin twice but got an infection in her port and went septic so all treatments went on hold. They couldnt operate on her GBM 4 so her treatment is radiation temador and avastin. Hoping to get back on tract here soon. She just got out of the hospital.

They did get the entire
They did get the entire tumor. I had surgery in Jan of this year. She gets it through a port? My doc didn't tell me much about it. He is doing 2 more rounds of 5 days on 23 off of temador then he wants to discuss it.

4theloveofmysis

TAMMY S said:

They did get the entire
They did get the entire tumor. I had surgery in Jan of this year. She gets it through a port? My doc didn't tell me much about it. He is doing 2 more rounds of 5 days on 23 off of temador then he wants to discuss it.

avastin
My sister gets avastin IV. You have to get a port before it is started. About 3 weeks before so the port site can heal. Avastin helps take the blood supply away from the tumor so the tumor cant grow, it also is an anti inflammatory that helps with the swelling and clean up so to speak from radiation. The trouble is that it changes the blood so healing can be a problem that is why you get the port about 3 weeks before.If you have to have any surgery they hold the avastin for a month before so that you can heal. My sisters port got infected, which sometimes happens. Proper cleaning before its accessed is really important!!!! Sepsis isnt fun !!So because they had to pull it, its having a little bit of a healing problem. I hope Im not scaring you. I think it a great drug. Im hoping that my sister can get back on it soon. She was having some weakness from the swelling in her brain and started the decadron and avstin and it cleared 100%. I would like to hear more about your story. Its so helpful to hear someone is doing well it gives me hope.

Gliomadude

Avastin
I had it for what they thought was necrosis from radiation I had on a tumor..38 years ago! Crazy, right? Anyway, it was easy
To take and I didn't have a port. Really spendy though....my insurance didn't want to pay for it...we convince them
Otherwise. Best to you!

MAJW

Gliomadude said:

Avastin
I had it for what they thought was necrosis from radiation I had on a tumor..38 years ago! Crazy, right? Anyway, it was easy
To take and I didn't have a port. Really spendy though....my insurance didn't want to pay for it...we convince them
Otherwise. Best to you!

You..
A port is not always the way to go...you can instead opt for a PICC line in the arm...much less invasive than a port...my best friend had the PICC for Avastin....

4theloveofmysis

MAJW said:

You..
A port is not always the way to go...you can instead opt for a PICC line in the arm...much less invasive than a port...my best friend had the PICC for Avastin....

port vs picc
Port is more long term. When you arent getting treatment there is no neddle lines etc.
Picc is up to six month some places say a year. You have the tubing on your arm at all times. Picc is more likely to get infected. But a port can get infected too...Both work well for the avastin.

momsworld

4theloveofmysis said:

port vs picc
Port is more long term. When you arent getting treatment there is no neddle lines etc.
Picc is up to six month some places say a year. You have the tubing on your arm at all times. Picc is more likely to get infected. But a port can get infected too...Both work well for the avastin.

my daughter
My daughter has a port to deliver her Avastin. She has had no problems with her port or effects from the Avastin. She has had 2 clear MRIs since starting her 5 drug regimen, one of them being the Avastin. So far so good. My daughter had more side effects from the Temodar than she does now.

SanDiegoPaul

momsworld said:

my daughter
My daughter has a port to deliver her Avastin. She has had no problems with her port or effects from the Avastin. She has had 2 clear MRIs since starting her 5 drug regimen, one of them being the Avastin. So far so good. My daughter had more side effects from the Temodar than she does now.

port/picc
could please explain to me what these are?

4theloveofmysis

SanDiegoPaul said:

port/picc
could please explain to me what these are?

port vs picc
they are long term IV's. If someone has to have IV med's for over a period of time. so they dont have to poke you over and over and use up veins. Most chemo's are pretty hard on your veins.Picc goes in your arm, the IV lines stay there, dangling on your arm. About three inch little IV lines. Port goes to your upper chest area, it is just under the skin. When it isnt being used there is nothing there. Looks like a little button under your skin. They access it when they need it and then take the needle out.
Picc is put in by a picc nurse and port is surgery. Ports can stay for a longer period of time. Hope this helps. Let us know how your appt goes...

4theloveofmysis

momsworld said:

my daughter
My daughter has a port to deliver her Avastin. She has had no problems with her port or effects from the Avastin. She has had 2 clear MRIs since starting her 5 drug regimen, one of them being the Avastin. So far so good. My daughter had more side effects from the Temodar than she does now.

temador
What kind of side effects does she have. My sister cant keep her platlets up, could be many diffrent things. Im hoping its not the temador, all the doctors have a diffrent view on it.

momsworld

4theloveofmysis said:

temador
What kind of side effects does she have. My sister cant keep her platlets up, could be many diffrent things. Im hoping its not the temador, all the doctors have a diffrent view on it.

Hi there
My daughter had a problem with her blood counts too. They are borderline low. There are a couple of things that we have changed with her meds. She is supposed to take Bactrim 3 days a week, but Bactrim can lower blood counts so she only takes the Bactrim 2 days a week. For some reason not all docs agree on that but since changing from 3 to 2 days a week, she has been fine. Her side effects from the temodar were nausea, hair loss and extreme fatigue, on the Avastin, Etoposide, cyclophosphamide and Thalomid (all part of her regimen, all oral chemos) she has hair loss, she has some fatigue but nothing she cannot manage. Nausea is once in awhile. Over all she has been doing pretty good with this treatment. What facility does your sister go to? We live in NH, so we are going to Jimmy Fund/Dana Farber in Boston, Mass. I just want you to know that for the 1st year after my daughters diagnosis, I cried everyday too. I still cry often because this is just so hard to grasp. The not knowing part is the hardest for me. There are so many things that I want for my daughter. I want her to have a first kiss, I want her to have a drivers license, and graduate from highschool, I want her to experience falling in love and all this may never happen. Everyone tells me to try to enjoy everyday that I have with her, but if it was them, would they still think that way? I want to enjoy everyday and I try very hard but, when I look at her it is so hard not to think of what may be. I pray to God everyday and I truely believe that he is with us, but I cannot change Gods will. Keep me posted on your sister and I will pray for her, you and everyone else who is going through this

Beckymarie

Avastin
My husband was treated for GBM IV inoperable with avastin. He did not have a port but had an IV line put in each treatment. Toward the end of treatments this became difficult as his veins would collapse so it would take several attempts befor a successful line was done. After his first round of treatments, his MRI showed a significant decrease in the tumor (over 50%), after the second round of treatments there was a reduction but not as much as the first round. We were told this is the nature of avastin. There are possible side effects...hemorrage being one. My husband did have several nose bleeds, one severe enough that it required an emergency room visit. We were told there is also a slight possibility of cerebral bleeds. Unfortunately, the tumor did find it way around the avastin and the tumor did progress. If we had to do it again, I would definitely still go with the avastin as I feel it gave him more time with us. I wish you luck with your decision.

4theloveofmysis

momsworld said:

Hi there
My daughter had a problem with her blood counts too. They are borderline low. There are a couple of things that we have changed with her meds. She is supposed to take Bactrim 3 days a week, but Bactrim can lower blood counts so she only takes the Bactrim 2 days a week. For some reason not all docs agree on that but since changing from 3 to 2 days a week, she has been fine. Her side effects from the temodar were nausea, hair loss and extreme fatigue, on the Avastin, Etoposide, cyclophosphamide and Thalomid (all part of her regimen, all oral chemos) she has hair loss, she has some fatigue but nothing she cannot manage. Nausea is once in awhile. Over all she has been doing pretty good with this treatment. What facility does your sister go to? We live in NH, so we are going to Jimmy Fund/Dana Farber in Boston, Mass. I just want you to know that for the 1st year after my daughters diagnosis, I cried everyday too. I still cry often because this is just so hard to grasp. The not knowing part is the hardest for me. There are so many things that I want for my daughter. I want her to have a first kiss, I want her to have a drivers license, and graduate from highschool, I want her to experience falling in love and all this may never happen. Everyone tells me to try to enjoy everyday that I have with her, but if it was them, would they still think that way? I want to enjoy everyday and I try very hard but, when I look at her it is so hard not to think of what may be. I pray to God everyday and I truely believe that he is with us, but I cannot change Gods will. Keep me posted on your sister and I will pray for her, you and everyone else who is going through this

WE live in Calif. In the kaiser system. They started her on Bactrim, but took her off, because of a rash. All the doctors have a diffrent thought on it. She is on ancef IV now, and I know that could cause .









































We live in Calif.We are in the kaiser system. She was on bactrim but it caused a rash. She is on ancef IV now that can cause it but the doctor didnt say that. They all say something diffrent. Im just praying they come up enough to get treatment. We arent able to do the avastin we are a month behind and temador is suppose to start up again next week. I pray over and over everyday for a miracle...
I try to hold my self together in front of my sister and father as much as I can. Its mostly when I crawl in to bed at night that those tear just start to come....

MAJW

Beckymarie said:

Avastin
My husband was treated for GBM IV inoperable with avastin. He did not have a port but had an IV line put in each treatment. Toward the end of treatments this became difficult as his veins would collapse so it would take several attempts befor a successful line was done. After his first round of treatments, his MRI showed a significant decrease in the tumor (over 50%), after the second round of treatments there was a reduction but not as much as the first round. We were told this is the nature of avastin. There are possible side effects...hemorrage being one. My husband did have several nose bleeds, one severe enough that it required an emergency room visit. We were told there is also a slight possibility of cerebral bleeds. Unfortunately, the tumor did find it way around the avastin and the tumor did progress. If we had to do it again, I would definitely still go with the avastin as I feel it gave him more time with us. I wish you luck with your decision.

More time...
Avastin probably bought my friend 7 months, with the glioblastoma ...she had done all the standard treatment, surgery, rads, Temador, two trial drugs at Duke University for two months..had to discontinue those due to the awful side effects...then Avastin with Carboplatin added at times....her counts would go way down and three times they were so low chemo was postponed...She fought this for 2 1/2 years...she passed away in March...

This is a hideous cancer...and I wish all of you who are fighting this, as the patient and the loved ones and care takers the very best...
God bless all of you.

henryr

Gliomadude said:

Avastin
I had it for what they thought was necrosis from radiation I had on a tumor..38 years ago! Crazy, right? Anyway, it was easy
To take and I didn't have a port. Really spendy though....my insurance didn't want to pay for it...we convince them
Otherwise. Best to you!

Question about your situation from a fellow GBM III
I am amazed and inspired to read a 38 year survival and I was wondering...

a) is that the correct number?

b) if I may ask, how many recurrences you have endured in 38 years?

Thanks for any information. And best of continued health to you.

madisonmuzz

momsworld said:

my daughter
My daughter has a port to deliver her Avastin. She has had no problems with her port or effects from the Avastin. She has had 2 clear MRIs since starting her 5 drug regimen, one of them being the Avastin. So far so good. My daughter had more side effects from the Temodar than she does now.

husband
Hi there. My husband started Avastin and Irnotecan 2 weeks ago. He is having the IV's done right in the veins in his arm. They do not need to have a port placed, unless they have bad veins. He is going for the infusion every other week. So far so good. He is doing well. His appetite has returned, he is feeling less tired and starting to do small jobs around the house. We are praying this will put his GBM into sleep mode or stable mode, which ever your facility calls it. He is having 6 treatments, then another MRI.

We are praying this is going to stop growth.....

Good luck to your daughter. I will keep her in my thoughts and prayers.......

madisonmuzz

Beckymarie said:

Avastin
My husband was treated for GBM IV inoperable with avastin. He did not have a port but had an IV line put in each treatment. Toward the end of treatments this became difficult as his veins would collapse so it would take several attempts befor a successful line was done. After his first round of treatments, his MRI showed a significant decrease in the tumor (over 50%), after the second round of treatments there was a reduction but not as much as the first round. We were told this is the nature of avastin. There are possible side effects...hemorrage being one. My husband did have several nose bleeds, one severe enough that it required an emergency room visit. We were told there is also a slight possibility of cerebral bleeds. Unfortunately, the tumor did find it way around the avastin and the tumor did progress. If we had to do it again, I would definitely still go with the avastin as I feel it gave him more time with us. I wish you luck with your decision.

Thank you
Thank you for sharing this story. We are just starting the Avastin and Irnotecan infusions. We are praying his next MRI will show a decrease in size.....

4theloveofmysis

madisonmuzz said:

husband
Hi there. My husband started Avastin and Irnotecan 2 weeks ago. He is having the IV's done right in the veins in his arm. They do not need to have a port placed, unless they have bad veins. He is going for the infusion every other week. So far so good. He is doing well. His appetite has returned, he is feeling less tired and starting to do small jobs around the house. We are praying this will put his GBM into sleep mode or stable mode, which ever your facility calls it. He is having 6 treatments, then another MRI.

We are praying this is going to stop growth.....

Good luck to your daughter. I will keep her in my thoughts and prayers.......

madison
It looks like you are new to this board, can you tell us your story so we can get to know you and your husband.

huxley2006

TAMMY S said:

They did get the entire
They did get the entire tumor. I had surgery in Jan of this year. She gets it through a port? My doc didn't tell me much about it. He is doing 2 more rounds of 5 days on 23 off of temador then he wants to discuss it.

Avastin
I was in a similar situation. GTR on temador but they also wanted to treat me with Avastin as well. I have heard some positive and negative things about Avastin. In the end after doing some research and discussing with other specialist I decided against it. My gut tells me that Avastin is a very useful medication that can help people but if you are lucky enough to have had a GTR Avastin may be premature. I think a lot of this depends on the location of the tumor (could there be secondary surgery?) and how aggressive the initial tumor was (not all GBM's are of equal aggressiveness).

Get a second opinion. The utilization of Avastin for Brain tumors is more or less in its infancy. Not all that much data about long term effects or even in its ability to slow down or stop a recurrence as far as I can tell.

Good Luck!

alutiiqmom

momsworld said:

my daughter
My daughter has a port to deliver her Avastin. She has had no problems with her port or effects from the Avastin. She has had 2 clear MRIs since starting her 5 drug regimen, one of them being the Avastin. So far so good. My daughter had more side effects from the Temodar than she does now.

side effects?
Hi:

My 17 year old was diagnosed with Anaplastic Astrocytome 3. She had surgery (they got 89-90%) of her tumor, radiation and now chemo.

She has infustion (avastin, irinitecan) and temodar (only 5 days a month). She is so sick from this regime she can hardly do anything. She doens't go to movies or walks or anywhere with her friends. She recently went to a naturopath to try and help her symptoms.

Any suggestions? Does this sound similar? God Bless you all.