Avastin withheld due to blood thinners

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  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Avastin

    Avastin's roll in the formation of blood clots is known.

    Here is info I pulled from the FDA site which lists approved meds and also shows approved labeling:

     

     On  the label  insert 11/20/2012 section 5.5 (not sure when this exactly was put on label)

     

     

    Arterial Thromboembolic Events 154 Serious, sometimes fatal, arterial thromboembolic events (ATE) including cerebral infarction, 155 transient ischemic attacks, myocardial infarction, angina, and a variety of other ATE occurred at a 156 higher incidence in patients receiving Avastin compared to those in the control arm. Across 157 indications, the incidence of Grade  3 ATE in the Avastin containing arms was 2.6% compared to 158 0.8% in the control arms. Among patients receiving Avastin in combination with chemotherapy, the 159 risk of developing ATE during therapy was increased in patients with a history of arterial 160 thromboembolism, or age greater than 65 years. [See Use in Specific Populations (8.5).] 161 The safety of resumption of Avastin therapy after resolution of an ATE has not been studied. 162 Discontinue Avastin in patients who experience a severe ATE. [See Dosage and Administration

    See the following for full insert info: http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/125085s265lbl.pdf

    Avastin Also...

    Is known to cause congestive heart failure over extended use...though the informational drug pamphlet I read did not specify a time frame for that possible occurence.

    I know I took it about 8-months or so...and I walked away with a tic in my heart from it that was not there before.  It's like trying to catch your breath and put your heart back in its proper rhythm...early on, it was very scary as you would breathe out and your heart felt like it was not going to contract....a real attention getter.

    It's permanent...and I feel myself catching an extra breath throughout the day...and I'm sure into the night when I'm unconscious.

    It definitely carries risks the longer you take it...should be considered a treatment option and not a lifestyle drug.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    Sundanceh said:

    Avastin Also...

    Is known to cause congestive heart failure over extended use...though the informational drug pamphlet I read did not specify a time frame for that possible occurence.

    I know I took it about 8-months or so...and I walked away with a tic in my heart from it that was not there before.  It's like trying to catch your breath and put your heart back in its proper rhythm...early on, it was very scary as you would breathe out and your heart felt like it was not going to contract....a real attention getter.

    It's permanent...and I feel myself catching an extra breath throughout the day...and I'm sure into the night when I'm unconscious.

    It definitely carries risks the longer you take it...should be considered a treatment option and not a lifestyle drug.

    Maybe it's good that he is
    Maybe it's good that he is taking a break from it. Sounds like it really takes a toll on the body. Steve's onc said that the Avastin doesn't play that big a role in fighting the cancer. She says the 5fu is what is important. This confuses me because the 5fu has been used for forty years. There has been so much cc advancement attributed to these anti-angiogenic meds. People living for many more years etc. Didn't want Steve to miss out on such an important drug. Maybe it's for the best. He has had some protein in his urine lately, as well.

    Chelsea
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Chelsea71 said:

    Maybe it's good that he is
    Maybe it's good that he is taking a break from it. Sounds like it really takes a toll on the body. Steve's onc said that the Avastin doesn't play that big a role in fighting the cancer. She says the 5fu is what is important. This confuses me because the 5fu has been used for forty years. There has been so much cc advancement attributed to these anti-angiogenic meds. People living for many more years etc. Didn't want Steve to miss out on such an important drug. Maybe it's for the best. He has had some protein in his urine lately, as well.

    Chelsea

    Hey Chels:)

    That's interesting what his doctor told you about the role of Avastin vs the role of 5fu. 

    The whole premise behind it was the claim that Avastin "choked off" the blood supply to the tumor....but that's the key word...Tumor.

    I was doing Folfox, Avastin and Xeloda at that time...after my liver surgery. Locally, we had eradicated the tumor with the open RFA and Cyberknife...then started chemo.

    Looking back now, it seems that my onc was just giving that to me as a "preventative", since for that period of time, I had no visible tumor...

    Avastin's role seems to be for tumors already present...and not just for systemic circulation in hopes of preventing rogue cells from forming by cutting off their blood supply.

    I've often wondered if that drug helped me...I know it hurt me...forever...and in ways, I may not even realize what the true fallout could be, unless I get further down the road and experience it. I feel fortunate that my condition is not worse than what I have to live with now. 

    Moot point for me, because I recurred again when it spread to the lungs...but I suspect that had much to do with my onc's (mis) managing of my case and the way he was adminstering my care.

    I believe he was truly "practicing."  And I also don't think he looked to my future, because I suspect he figured I wasn't going to make it anyway.  They probably used some of their patients as 'experiments' to see how they might prescribe to another patient.

    Only we were playing for keeps...

    You know what really upsets me about the cancer fight, Chels?

    "We have to trade THIS for THAT - While sacrificing TOMORROW for TODAY."

    The decisions we make, or are made for us...have a lasting impression....because, they last the rest of our lives.

    I wish it was not so...

    P.S. Have his urine checked...Camptosar aka CPT-11 aka Irinotecan is notoriously hard on the renal system...and can be compromised...and in the worst case scenario...can fail.

    Ron50 has reported urine protein issues....he did something early called Levamisole 48x...and it has haunted him.

    My kidneys nearly failed 19 months ago when I was coming out of my last fight....I worried that a couple of more and I'd be cathetered for life. 

    A break might be good...and perhaps, he could elect to continue it at a later time...wish I knew the answer there.

    See ya':)

    -c

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Sundanceh said:

    Hey Chels:)

    That's interesting what his doctor told you about the role of Avastin vs the role of 5fu. 

    The whole premise behind it was the claim that Avastin "choked off" the blood supply to the tumor....but that's the key word...Tumor.

    I was doing Folfox, Avastin and Xeloda at that time...after my liver surgery. Locally, we had eradicated the tumor with the open RFA and Cyberknife...then started chemo.

    Looking back now, it seems that my onc was just giving that to me as a "preventative", since for that period of time, I had no visible tumor...

    Avastin's role seems to be for tumors already present...and not just for systemic circulation in hopes of preventing rogue cells from forming by cutting off their blood supply.

    I've often wondered if that drug helped me...I know it hurt me...forever...and in ways, I may not even realize what the true fallout could be, unless I get further down the road and experience it. I feel fortunate that my condition is not worse than what I have to live with now. 

    Moot point for me, because I recurred again when it spread to the lungs...but I suspect that had much to do with my onc's (mis) managing of my case and the way he was adminstering my care.

    I believe he was truly "practicing."  And I also don't think he looked to my future, because I suspect he figured I wasn't going to make it anyway.  They probably used some of their patients as 'experiments' to see how they might prescribe to another patient.

    Only we were playing for keeps...

    You know what really upsets me about the cancer fight, Chels?

    "We have to trade THIS for THAT - While sacrificing TOMORROW for TODAY."

    The decisions we make, or are made for us...have a lasting impression....because, they last the rest of our lives.

    I wish it was not so...

    P.S. Have his urine checked...Camptosar aka CPT-11 aka Irinotecan is notoriously hard on the renal system...and can be compromised...and in the worst case scenario...can fail.

    Ron50 has reported urine protein issues....he did something early called Levamisole 48x...and it has haunted him.

    My kidneys nearly failed 19 months ago when I was coming out of my last fight....I worried that a couple of more and I'd be cathetered for life. 

    A break might be good...and perhaps, he could elect to continue it at a later time...wish I knew the answer there.

    See ya':)

    -c

    I also did Avastin

    without visible tumors, Craig.  And that was the period in which I had a ton of tumor growth, so...not always the wonder drug that it seems to be, at least not for everyone.   AA

  • coloCan
    coloCan Member Posts: 1,944 Member
    Sundanceh said:

    Hey Chels:)

    That's interesting what his doctor told you about the role of Avastin vs the role of 5fu. 

    The whole premise behind it was the claim that Avastin "choked off" the blood supply to the tumor....but that's the key word...Tumor.

    I was doing Folfox, Avastin and Xeloda at that time...after my liver surgery. Locally, we had eradicated the tumor with the open RFA and Cyberknife...then started chemo.

    Looking back now, it seems that my onc was just giving that to me as a "preventative", since for that period of time, I had no visible tumor...

    Avastin's role seems to be for tumors already present...and not just for systemic circulation in hopes of preventing rogue cells from forming by cutting off their blood supply.

    I've often wondered if that drug helped me...I know it hurt me...forever...and in ways, I may not even realize what the true fallout could be, unless I get further down the road and experience it. I feel fortunate that my condition is not worse than what I have to live with now. 

    Moot point for me, because I recurred again when it spread to the lungs...but I suspect that had much to do with my onc's (mis) managing of my case and the way he was adminstering my care.

    I believe he was truly "practicing."  And I also don't think he looked to my future, because I suspect he figured I wasn't going to make it anyway.  They probably used some of their patients as 'experiments' to see how they might prescribe to another patient.

    Only we were playing for keeps...

    You know what really upsets me about the cancer fight, Chels?

    "We have to trade THIS for THAT - While sacrificing TOMORROW for TODAY."

    The decisions we make, or are made for us...have a lasting impression....because, they last the rest of our lives.

    I wish it was not so...

    P.S. Have his urine checked...Camptosar aka CPT-11 aka Irinotecan is notoriously hard on the renal system...and can be compromised...and in the worst case scenario...can fail.

    Ron50 has reported urine protein issues....he did something early called Levamisole 48x...and it has haunted him.

    My kidneys nearly failed 19 months ago when I was coming out of my last fight....I worried that a couple of more and I'd be cathetered for life. 

    A break might be good...and perhaps, he could elect to continue it at a later time...wish I knew the answer there.

    See ya':)

    -c

    Don't understand how any onc can detract from the role

    Avastin has played for so many here.....While technical, this was just published yesterday

     

    www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0051780

     

    The impact of Bevacizumab (Avastin) on survival in Mertastatic solid tumors- a meta-analysis and systematic review"

    (Suggest reading "Abstract", then "Discussion" part)

     

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    Sundanceh said:

    Hey Chels:)

    That's interesting what his doctor told you about the role of Avastin vs the role of 5fu. 

    The whole premise behind it was the claim that Avastin "choked off" the blood supply to the tumor....but that's the key word...Tumor.

    I was doing Folfox, Avastin and Xeloda at that time...after my liver surgery. Locally, we had eradicated the tumor with the open RFA and Cyberknife...then started chemo.

    Looking back now, it seems that my onc was just giving that to me as a "preventative", since for that period of time, I had no visible tumor...

    Avastin's role seems to be for tumors already present...and not just for systemic circulation in hopes of preventing rogue cells from forming by cutting off their blood supply.

    I've often wondered if that drug helped me...I know it hurt me...forever...and in ways, I may not even realize what the true fallout could be, unless I get further down the road and experience it. I feel fortunate that my condition is not worse than what I have to live with now. 

    Moot point for me, because I recurred again when it spread to the lungs...but I suspect that had much to do with my onc's (mis) managing of my case and the way he was adminstering my care.

    I believe he was truly "practicing."  And I also don't think he looked to my future, because I suspect he figured I wasn't going to make it anyway.  They probably used some of their patients as 'experiments' to see how they might prescribe to another patient.

    Only we were playing for keeps...

    You know what really upsets me about the cancer fight, Chels?

    "We have to trade THIS for THAT - While sacrificing TOMORROW for TODAY."

    The decisions we make, or are made for us...have a lasting impression....because, they last the rest of our lives.

    I wish it was not so...

    P.S. Have his urine checked...Camptosar aka CPT-11 aka Irinotecan is notoriously hard on the renal system...and can be compromised...and in the worst case scenario...can fail.

    Ron50 has reported urine protein issues....he did something early called Levamisole 48x...and it has haunted him.

    My kidneys nearly failed 19 months ago when I was coming out of my last fight....I worried that a couple of more and I'd be cathetered for life. 

    A break might be good...and perhaps, he could elect to continue it at a later time...wish I knew the answer there.

    See ya':)

    -c

    Yes, it will be interesting

    Yes, it will be interesting to see how it all plays out.  We're at the portograam appointment now.  (He cut his ear shaving and his blood is running so thin that we can't get the bleeding to stop.  This has added some extra drama to the day!). Hopefully the avastin is not ruled out forever.  Will ask the onc about the protein.  She hasn't yet brought it up.  I just noticed it with the bw results.  Didn't realize irenotecan was hard on kidneys too.  It is too bad so much has to be sacrificed in this battle.  For example, the swelling is now gone thanks to the dexamethasone but it comes with a price.  Irritability.  He's up one minute and down the next.  He recognizes it but can't control it.  Many trade offs.  

     

    Chelsea

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    The steroids can be hell...

    make sure that he doesn't stop taking them all at once, no matter how unpleasant they make him feel.  Stopping them without tapering can be disastrous on the system.  I hated being on steroids....made my heart feel like it was going to beat its way out of my chest.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member

    The steroids can be hell...

    make sure that he doesn't stop taking them all at once, no matter how unpleasant they make him feel.  Stopping them without tapering can be disastrous on the system.  I hated being on steroids....made my heart feel like it was going to beat its way out of my chest.

    He's on 4 mg a day. 2 mg in
    He's on 4 mg a day. 2 mg in the am and 2 mg in the pm. The side effects are not pleasant. Irritability (Possibly a bit depressed. Unusual for him as he is always upbeat and chipper), can't sleep, constant hunger. I'm hoping he won't be on them for long, however, the onc gave him 9 refills. This strikes me as odd as she was very hesitant to prescribe them in the first place. Thanks for the advice about tapering. I've heard they can be har to get off of.

    Chelsea