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AVISTON?

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

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's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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's picture
TAMMY S
Posts: 16
Joined: Jan 2011

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's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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.

huxley2006
Posts: 25
Joined: Oct 2010

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!

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Tammy I have the port for my chemo and i have never had a problem with it. It is so much better than being stuck everytime.

Gliomadude
Posts: 7
Joined: Apr 2011

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
Posts: 2515
Joined: May 2009

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's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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's picture
momsworld
Posts: 135
Joined: May 2010

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
Posts: 25
Joined: May 2011

could please explain to me what these are?

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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's picture
momsworld
Posts: 135
Joined: May 2010

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

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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....

madisonmuzz
Posts: 13
Joined: Apr 2011

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.......

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Madisonmuzz... i just started the avastin on August 1, 2011. i am suspose to get the port put in soon. they have a hard time getting IV's in me and it really hurts. i go for mine every other week also, but i cant eat much, seems like everything just runs right through me.And i feel more tired now than before on just the temodar. Is ure husband still on temodar also. i still do it 5 days every 28 day cycle.

connsteele
Posts: 232
Joined: May 2011

our son (age 34) just started his first cycle on the 5/28 Temodar. (dx AA3 on 4/13/11) His NO mentioned going on the Avastin infusion every two weeks but said he didn't want to give up on the Temodar, to give it another round (his first post-radiation MRI on July 21) show mixed results). However, Avastin may still be in his future.

How tired were you on just the Temodar? Today is day 3 of the 5-day Temodar and all he wants to do is sleep in the recliner. Not interested in TV, radio or anything. Some of this may be depression.

Had you been on the Temodar very long before the docs put you on Avastin? And do you mind saying why you were put on the Avastin? This could become the same for our son.

Hope and pray you are feeling better. Thanks for your posts.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Connsteele.... I take temodar 5 on 28 off. I have not had any problems with the temodar. I take a zofran 30 min before I take the temodar every time and have not gotton sick. My appitite is better now also. I took temodar and radiation from dec 21, 2010 to feb 2, 2011, they stopped radiation and continued temodar on mar 3, 2011, i believe. Then they started the avastin and irinotecan (chemo IV's) on august 1, 2011. after the radiation, my MRI showed tumor doubled in size and alot od swelling, but first MRI after starting the chemo IV's showed no swelling and tumor shrinking, I have still been on these 3 chemos since and they just done another MRI last week and results showed its still shrinking. I have not been nassaued at all. I have had some diarrhes but they changed the dosage of avastin and it stopped. I have done pretty good on these 3 chemo's. I know everyone is different and I guess it could also show difference with different types of cancers. I have anaplastic astrocytoma. i did stay more tired n the beginning but no so much now. my appitite is also better now. I agree some of it may be depression, i was extremely depressed n the beginning. The avastin is the one chemo my doc said he would not take me off of cause it is working and its shrinking the tumor. if u do facebook find me there under Lourie Nelson Cushman. Best of luck to ure son and family

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

madisonmuzz, I am also on avastin and irinotecan, i go every other week for chemo, bout 3 to 4 hours a day. i also take temodar for 5 days every 28 day cycle. I had started on the chemo Iv and they were having trouble getting IV s started, my veins kept dropping, so they put the port in. I have had no trouble with the port at all, nor have i had much trouble at all on these three chemos. just had MRI last week again, it showed the tumor is still shrinking. the MRI I had a couple months ago also showed shrinking and all the swelling had gone away also. I had not had any nassau either, but n beginning I did have diarrhea but they changed dosage of avastin and it cleared up. I have tiredness days still but not everyday and now I can eat alot better. I wish good lluck to ure husband. I will keep u both in my prayers. these chemos has stopped the growth of mine so far, will be praying it does the same for your husband.

barbn
Posts: 33
Joined: Jan 2012

My husband will be starting Avastin tomorrow.Grade 4 gbm.He had Surgery radiation and chemo (temodor). We went for the MRI on Friday. The MRI showed, where the tumor was before the surgery was gone, but appears to have two small white spots elsewhere. We were told the Mri could be fuzzy the 1st time around from radiation and I also read online sometimes they could appear to be tumors but are lesions. Has anyone else heard of this????? I guess I want to have positive thinking too. Anyway the Dr. doesn't want to take chance's so Avastin it is.
I am really concerned about side effects. To me it looks like allot of people are getting good results with shrinkage. I have to work and my husband will be home by himself at times.
I just pray he is ok if no-one is around to monitor him.
We are very optimistic with this fight. It is so hard not to have my "OLD " husband around.
He is doing well. Tired quite a bit. But he exercises as best he can. Participates in helping when he can,etc.
This is such a long hard road.
He was diagnosed Nov 1st, 2011.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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.

connsteele
Posts: 232
Joined: May 2011

I know what you mean about your daughter not wanting to do anything. Same with our son (age 34, dx AA3 on 4-13-11). Completed five weeks radiation/Temodar last of July and now just started on the 5/28 Temodar cycle (today is day 3). All he wants to do is sit in the recliner and sleep with his ball cap pulled down over his face. He seems to perk up when we go out, for his occupational and physical therapy, or with visitors. We try to engage him, take him out fishing, which he likes, or play a game. But we can't be his full time caretakers (pretty much full-time job as he has vision problems, and gross and fine motor deficits and needs help with most everything, including managing his diabetes) along with being his full-time social director. He has no interest in his Xbox or computer, which he did before all this nightmare started. He did start anti depressant meds but so far, no change.

So, the big question, is this from depression or fatigue from the meds. If so, should we leave him alone and let him sleep most of the day in the recliner. This is hard to watch or know what to do.

sadinholland
Posts: 226
Joined: Apr 2011

I can imagine how difficult it is to get your son to do something other than sleep. My husband was the same way at first. Once he started doing things like going for a walk, playing games with our daughter, he realized it made him feel much better and that sleeping all day and doing nothing really made him depressed. With your son's vision problems, he may not want to play video games anymore but maybe there is some type of game he could play with the family. I don't know how much of his vision has been affected but try to convince him that he will feel much bette if he just gives it a try. I know easier said than done. I will pray for him and your family.

henryr
Posts: 2
Joined: Mar 2011

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.

Beckymarie
Posts: 358
Joined: Aug 2009

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.

MAJW
Posts: 2515
Joined: May 2009

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.

madisonmuzz
Posts: 13
Joined: Apr 2011

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.....

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

HI:
I wish you the best. It is a rough road and often time we don't know what to do.

May God Bless you and your family. I just started reading a book by Dr. James Dobson called "When God Does Not Make Sense" and I find it comforting on this crazy journey.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Tammy S, I have AA3.i have had radiation and temodar from dec 21, 2010 to feb 3 , 2011. they restarted me on temodar on mar. 3, 2010 for 5 days every 28 day cycle. after radiation ended, they done MRI whicj showed my tumor had grown, so they decided to start me on Chemo Iv on August 1, 2010, i am getting 2 different kinds in Iv, one is avastin. But anyway, They were having such a hard time putting IV in me for chemo. My veins r really small, which chemo can cause this, and also for veins to drop, they put the port in me for my chemo IV. I had it put in on a wed and the following monday they used it for my chemo IV and it was good. It was so much better than them putting an IV in., but they were able to use it that soon after they put it in. Also I had only had 2 Iv treatments when they decided to put my port in. i didn't have to do it way ahead of starting treatments and mne has been fine. A little sore in that area in the beginning but it is so much better than getting stuck everything. now it is just a lil needle prick. doent hurt, and u get started faster with ure chemo. Hope this has helped. May God watch over you in ure fight and mine.

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