Avstin

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Avstin

by Joycesupporter on Tue Jun 30, 2009 12:00 AM

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Hi All! I just want to say the only solice I receive is from this site and reading all of your "stories" and life experiences with this monster! I want to say thankyou to all of you who share your experiences and info. My mom(stage 3C ovarian) with lymph node involvement,is to start her first chemo. tx. tomorrow(7/1). Her oncologist agreed to give her Avastin with her chemo(carbo. and Taxol) with much persuasion from us(my moms support/medical exploring team,me and my dad) I am an R.N. and very daunted by this whole experience. i feel as though if i make the wrong suggestion and/or request that i may jeapordize my moms recovery potential. Anyways, her oncologist said " i don't feel that the data that is out there supports a strong enough reason to give the drug(Avastin). Then he quoted 2 studies of 60 and 110 people where there was"only" a 70-80% improvement.HELLOOOOOO? Am I  misunderstanding him ?Why would he be leary about numbers like that? My mom was signed up for a clinical trial at Roswell Park and we knew that she may not get the drug. The research nurse said that it is already in phase 3 of the trial because it has done so well. They need 1800 people to complete the study and are having a hard time getting them because community oncologists are giving the drug. Therefore we(she) bowed out of the study in lew of getting the actual drug. I just wish that her doctor was more enthusiastic about giving her the Avastin.As a nurse I know that if a doctor absolutely doesn't see a benefit of a med. they won't give it. I just don't want my moms doc to be put in a frame of mind that "oh it's those Pushy People on the phone" or to get an attitude about us. I know how docs egos are and I don't want it to affect my moms care. We don't have enough time to change doctors,she need to start chemo. now. Anyone have any words of advice or encouragement. We have the attitude that my moms health is the number one priority and if we aren't her docs favorite people "oh well!"  Please keep her in your Prayers. Her name is Joyce. thanks!! :) Nicole

RE: Avstin

by Harrietg on Wed Jul 01, 2009 12:00 AM

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hi joyce! i live in europe & i must say they hate to give avastin! my onc is really afraid of the side effects: high blood pressure & possibly bowel perforation; so u see, its not all rosy! harriet

RE: Avstin

by Britta on Sun Jul 05, 2009 12:00 AM

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I am stage 3 ovarian cancer.it is almost 4 years now and my treatment the last year has been Avastin every 3 weeks. it is no longer efffective and i am on my own. All the best britta

RE: Avstin

by Scorpion on Thu Jul 09, 2009 12:00 AM

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Hi!  I was diagnosed as Stage 4 back in '98 - was good until '04, then it came back ..... I'm on my 3rd different combo of chemo which is now Taxol w/Avastin.  My surgeon swears by it and after my oncoligst met w/his team, they agreed on this protocol.  After 5 treatments, my tumor marker dropped 130+ pts - CT scans probably next month.  Yes, my blood pressure went up 20 pts, then dropped again so they are watching me.  May be worth a try if she doesn't have significant other issues w/her bowel that would prevent her from being a good candidate for the treatment.  I would also like to share a holistic, natural therapy called Gerson - I tell everyone because knowledge is power - gerson.org.  My doctors have told me there's no cure for ovarian cancer, it's treated as a chronic illness so eventually, all chemo will stop working.  Gerson is another avenue of hope for people in our position.

My best to you & your mom!!!

RE: Avstin

by Annes on Thu Jul 09, 2009 12:00 AM

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On 6/30/2009 Joycesupporter wrote:

Hi All! I just want to say the only solice I receive is from this site and reading all of your "stories" and life experiences with this monster! I want to say thankyou to all of you who share your experiences and info. My mom(stage 3C ovarian) with lymph node involvement,is to start her first chemo. tx. tomorrow(7/1). Her oncologist agreed to give her Avastin with her chemo(carbo. and Taxol) with much persuasion from us(my moms support/medical exploring team,me and my dad) I am an R.N. and very daunted by this whole experience. i feel as though if i make the wrong suggestion and/or request that i may jeapordize my moms recovery potential. Anyways, her oncologist said " i don't feel that the data that is out there supports a strong enough reason to give the drug(Avastin). Then he quoted 2 studies of 60 and 110 people where there was"only" a 70-80% improvement.HELLOOOOOO? Am I  misunderstanding him ?Why would he be leary about numbers like that? My mom was signed up for a clinical trial at Roswell Park and we knew that she may not get the drug. The research nurse said that it is already in phase 3 of the trial because it has done so well. They need 1800 people to complete the study and are having a hard time getting them because community oncologists are giving the drug. Therefore we(she) bowed out of the study in lew of getting the actual drug. I just wish that her doctor was more enthusiastic about giving her the Avastin.As a nurse I know that if a doctor absolutely doesn't see a benefit of a med. they won't give it. I just don't want my moms doc to be put in a frame of mind that "oh it's those Pushy People on the phone" or to get an attitude about us. I know how docs egos are and I don't want it to affect my moms care. We don't have enough time to change doctors,she need to start chemo. now. Anyone have any words of advice or encouragement. We have the attitude that my moms health is the number one priority and if we aren't her docs favorite people "oh well!"  Please keep her in your Prayers. Her name is Joyce. thanks!! :) Nicole

 

RE: Avstin

by Annes on Thu Jul 09, 2009 12:00 AM

Quote | Reply

 

On 6/30/2009 Joycesupporter wrote:

Hi All! I just want to say the only solice I receive is from this site and reading all of your "stories" and life experiences with this monster! I want to say thankyou to all of you who share your experiences and info. My mom(stage 3C ovarian) with lymph node involvement,is to start her first chemo. tx. tomorrow(7/1). Her oncologist agreed to give her Avastin with her chemo(carbo. and Taxol) with much persuasion from us(my moms support/medical exploring team,me and my dad) I am an R.N. and very daunted by this whole experience. i feel as though if i make the wrong suggestion and/or request that i may jeapordize my moms recovery potential. Anyways, her oncologist said " i don't feel that the data that is out there supports a strong enough reason to give the drug(Avastin). Then he quoted 2 studies of 60 and 110 people where there was"only" a 70-80% improvement.HELLOOOOOO? Am I  misunderstanding him ?Why would he be leary about numbers like that? My mom was signed up for a clinical trial at Roswell Park and we knew that she may not get the drug. The research nurse said that it is already in phase 3 of the trial because it has done so well. They need 1800 people to complete the study and are having a hard time getting them because community oncologists are giving the drug. Therefore we(she) bowed out of the study in lew of getting the actual drug. I just wish that her doctor was more enthusiastic about giving her the Avastin.As a nurse I know that if a doctor absolutely doesn't see a benefit of a med. they won't give it. I just don't want my moms doc to be put in a frame of mind that "oh it's those Pushy People on the phone" or to get an attitude about us. I know how docs egos are and I don't want it to affect my moms care. We don't have enough time to change doctors,she need to start chemo. now. Anyone have any words of advice or encouragement. We have the attitude that my moms health is the number one priority and if we aren't her docs favorite people "oh well!"  Please keep her in your Prayers. Her name is Joyce. thanks!! :) Nicole

 

RE: Avstin

by Donna_Gayle on Thu Jul 09, 2009 12:00 AM

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Hello Joycesupporter,

I don't know much about Avastin, but I do know about Taxol/Cisplatin which is a little harder than Carbo.  Believe me the two chemos will wipe your mom out.  I'd hate to have her subjected to  more than her body can tolerate.  With my chemo I had so many things appear (like boils, staph ifection, fevers, swelling, etc.) in addition to the day to day nausea, weakness, and misery that goes with chemo, not to  mention the total hair loss which really wasn't that important, but it all adds to a feeling of helplessness and some depression.

I'm sure she is a fighter and will come through all of this Ok.  Keep us informed and good luck.

 Teal Warrier Gayle

RE: Avstin

by Annes on Sun Jul 12, 2009 12:00 AM

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On 7/9/2009 Annes wrote:

 

On 6/30/2009 Joycesupporter wrote:

Hi All! I just want to say the only solice I receive is from this site and reading all of your "stories" and life experiences with this monster! I want to say thankyou to all of you who share your experiences and info. My mom(stage 3C ovarian) with lymph node involvement,is to start her first chemo. tx. tomorrow(7/1). Her oncologist agreed to give her Avastin with her chemo(carbo. and Taxol) with much persuasion from us(my moms support/medical exploring team,me and my dad) I am an R.N. and very daunted by this whole experience. i feel as though if i make the wrong suggestion and/or request that i may jeapordize my moms recovery potential. Anyways, her oncologist said " i don't feel that the data that is out there supports a strong enough reason to give the drug(Avastin). Then he quoted 2 studies of 60 and 110 people where there was"only" a 70-80% improvement.HELLOOOOOO? Am I  misunderstanding him ?Why would he be leary about numbers like that? My mom was signed up for a clinical trial at Roswell Park and we knew that she may not get the drug. The research nurse said that it is already in phase 3 of the trial because it has done so well. They need 1800 people to complete the study and are having a hard time getting them because community oncologists are giving the drug. Therefore we(she) bowed out of the study in lew of getting the actual drug. I just wish that her doctor was more enthusiastic about giving her the Avastin.As a nurse I know that if a doctor absolutely doesn't see a benefit of a med. they won't give it. I just don't want my moms doc to be put in a frame of mind that "oh it's those Pushy People on the phone" or to get an attitude about us. I know how docs egos are and I don't want it to affect my moms care. We don't have enough time to change doctors,she need to start chemo. now. Anyone have any words of advice or encouragement. We have the attitude that my moms health is the number one priority and if we aren't her docs favorite people "oh well!"  Please keep her in your Prayers. Her name is Joyce. thanks!! :) Nicole

Hi Nicole,

I am Stage 3C, had OVC surgery in Aug 08, chemo from Sept-Jan.  Cisplatin and Taxol.  Also on a double blind trial for Avastin which started on 2nd chemo and continues to Sept 09 (infusIon every 3 weeks)  I feel certain I am Avastin due to deveral episodes of very high BP (210/100) and nose bleeding.  The neuropathy effects do not peak until 4-6 mos (or more) after chemo-I did not know that earlier.  I did not have nausea, due, I think to Emend and Zofran.  I still have many of the chemo-type side effects which escalate a few days after an infusion.  Very difficult to get any answers or help from the meds, possibly due to Avastin being on a blind study.  I felt I had nothing to lose by being on the trial, esp after learning the statistics on recurrence.   Avastin probably would not be paid for by our insurance unless I was in a recurrence, on another round of chemo.  I work 3 days/week. Still have lots of neuropathy in my hands, feet, legs arms, tire easily, have trouble walking any distance.  I found a few women with OVC to talk to (mostly email) and meet one woman every week for coffee and gabbing.  This is a long journey we're on.  Best wishes to you and your family.


 

RE: Avstin

by Annes on Sun Jul 12, 2009 12:00 AM

Quote | Reply

 

On 7/9/2009 Scorpion wrote:

Hi!  I was diagnosed as Stage 4 back in '98 - was good until '04, then it came back ..... I'm on my 3rd different combo of chemo which is now Taxol w/Avastin.  My surgeon swears by it and after my oncoligst met w/his team, they agreed on this protocol.  After 5 treatments, my tumor marker dropped 130+ pts - CT scans probably next month.  Yes, my blood pressure went up 20 pts, then dropped again so they are watching me.  May be worth a try if she doesn't have significant other issues w/her bowel that would prevent her from being a good candidate for the treatment.  I would also like to share a holistic, natural therapy called Gerson - I tell everyone because knowledge is power - gerson.org.  My doctors have told me there's no cure for ovarian cancer, it's treated as a chronic illness so eventually, all chemo will stop working.  Gerson is another avenue of hope for people in our position.

My best to you & your mom!!!


HI - I'm looking for online friends since I don't get much med 'advice" .

I'm on an Avastin trial until Sept; this began in Sept 08, in conjunction with chemo.  I'm 66, my CA125 is down to 12 from a pre-surgery 850. I work 3 days/week.  Neuropathy is still increasing, muscle aches etc. Keep in touch.

annes

RE: Avstin

by Annes on Sun Jul 12, 2009 12:00 AM

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On 7/1/2009 Harrietg. wrote:

hi joyce! i live in europe & i must say they hate to give avastin! my onc is really afraid of the side effects: high blood pressure & possibly bowel perforation; so u see, its not all rosy! harriet

Hi Harriet - I am on a blind trial with Avastin (Sept 08-Sept 09) and am certain I am on the drug due to side effects:  high BP (under control), nose/gum bleeding, migraines.  There is no recommended dosage for OVC so it is hit or miss.  I chose the trial after learning about OVC and recurrence. This is a trial by Genentech, Nat'l Inst of Health and vatious med centers.  It's uncertain what wpud happen if my insurance didn't pay.  Outside the trial, Avastin would not have been covered unti I was in a recurring situation.  None of this is easy, is it? 

Stay in touch.

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