HER2 Support Group Forums - View Single Post - Onc. denies Herceptin forever bcause of low MUGA

09-23-2005, 05:50 AM

Hi Julie

First let me say I am not a doctor and am always a bit dubious about the reliability of 'medical advice and knowledge' exchanged on what is a support site. Caveat given, I can well imagine your concern at stopping your herceptin at this time. I have had a few conversations with oncologists which if I report them correctly might give you a bit of comfort. Or at least a basis for a more reassuring talk with your onc.

To begin with, the risk of heart failure on Herceptin is real and not to be taken lightly. In some trials about 20% don't complete the one year course because of falling MUGA scores. I believe there are guidelines based upon the trials that indicate when the risk of a severe cardiac event exceeds the risk reduction of the Herceptin. Understandably, your onc doesn't want to cure you of one thing only to kill you with another.

The next bit comes under the heading of medical hearsay. I understand that buried within the data of the HERA trial is a suggestion that the benefits of Herceptin are largely weighted towards the early stages of treatment - particularly the Taxol/Herceptin combination. Hence for some people the benefit of taking if for 3 months might be indistinguishable from taking it for 12.

As I got the story, they do know that in the majority of cases herceptin doesn't work indefinitely in one patient. 12 months was picked as a period for the trials as it was within the known effective period of herceptin and long enough to err on the side of caution. The view of my wife's onc was that in the future they might reduce adjuvant herceptin treatment to 6 months or less.

More trial data and info passes between oncologists than ever gets into papers and press releases. So your onc is probably being totally sincere when he says that he's happy with 6 months of herceptin and more concerned about the risks of continuing with it. Plus he'll be taking into account a lot of other information which might be telling him you're doing well and taking the real risk of creating heart problems is unecessary.

Sounds like he's doing the sensible thing of a second MUGA - and by the time you see him next I'm sure the members of the site will have armed you with enough questions so you come away agreeing between you that whatever the plan is, it's the right plan.

09-23-2005, 05:50 AM	#2
JohnL Guest Posts: n/a	No more Herceptin? Hi Julie First let me say I am not a doctor and am always a bit dubious about the reliability of 'medical advice and knowledge' exchanged on what is a support site. Caveat given, I can well imagine your concern at stopping your herceptin at this time. I have had a few conversations with oncologists which if I report them correctly might give you a bit of comfort. Or at least a basis for a more reassuring talk with your onc. To begin with, the risk of heart failure on Herceptin is real and not to be taken lightly. In some trials about 20% don't complete the one year course because of falling MUGA scores. I believe there are guidelines based upon the trials that indicate when the risk of a severe cardiac event exceeds the risk reduction of the Herceptin. Understandably, your onc doesn't want to cure you of one thing only to kill you with another. The next bit comes under the heading of medical hearsay. I understand that buried within the data of the HERA trial is a suggestion that the benefits of Herceptin are largely weighted towards the early stages of treatment - particularly the Taxol/Herceptin combination. Hence for some people the benefit of taking if for 3 months might be indistinguishable from taking it for 12. As I got the story, they do know that in the majority of cases herceptin doesn't work indefinitely in one patient. 12 months was picked as a period for the trials as it was within the known effective period of herceptin and long enough to err on the side of caution. The view of my wife's onc was that in the future they might reduce adjuvant herceptin treatment to 6 months or less. More trial data and info passes between oncologists than ever gets into papers and press releases. So your onc is probably being totally sincere when he says that he's happy with 6 months of herceptin and more concerned about the risks of continuing with it. Plus he'll be taking into account a lot of other information which might be telling him you're doing well and taking the real risk of creating heart problems is unecessary. Sounds like he's doing the sensible thing of a second MUGA - and by the time you see him next I'm sure the members of the site will have armed you with enough questions so you come away agreeing between you that whatever the plan is, it's the right plan.