AVISTON?

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  • alutiiqmom
    alutiiqmom Member Posts: 256
    #22
    madisonmuzz said:

    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.....

    wishing you the best
    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
    cushla69 Member Posts: 45
    #23
    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.......

    Avastin
    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
    connsteele Member Posts: 232
    #24
    cushla69 said:

    Avastin
    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.

    Temodar and Avastin
    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.
  • connsteele
    connsteele Member Posts: 232
    #25
    alutiiqmom said:

    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.

    Is it depression or the meds?
    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
    sadinholland Member Posts: 248
    #26
    connsteele said:

    Is it depression or the meds?
    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.

    I can imagine how difficult
    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.
  • cushla69
    cushla69 Member Posts: 45
    #27
    Tammy S, I have AA3.i have
    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.
  • cushla69
    cushla69 Member Posts: 45
    #28
    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.

    port
    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.
  • cushla69
    cushla69 Member Posts: 45
    #29
    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.......

    madisonmuzz, I am also on
    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.
  • cushla69
    cushla69 Member Posts: 45
    #30
    connsteele said:

    Temodar and Avastin
    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.

    Temodar and Avastin
    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
  • barbn
    barbn Member Posts: 33
    #31
    cushla69 said:

    madisonmuzz, I am also on
    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.

    Avastin
    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.

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