Onc. denies Herceptin forever bcause of low MUGA

[Julie]

As you all know from my previous post that I had my recent MUGA which showed ejection fraction of 44% (3months ago it was 56%).
I had an appointment with my oncologist today to discuss the future action. He says he is not going to prescribe me Herceptin forever (in nonmetastatic conditions) even if my Heart function improves and the EF shows more than 50%. I begged him to redo my MUGA after a month or two and he denies saying that I already had 6months of Herceptin and it should be enough. He says the heart strengthening medication is just going to put a bandage around the problem and it doesn't really strengthen the heart. He wants to repeat the MUGA immediatly to rule out any false readings. If it comes same he will never give me Herceptin.
I really want to finish my one year adjuvant Herceptin so that atleast I will get the benifit mentioned in the clinical trials.

I am on Herceptin alone since March 05 after finishing my AC + Taxol. I am stage 3b with supraclavicular node involvment.

Really confused and stressed about not getting the drug. Please help me if you have any suggestions.

Thanks,
Julie

[JohnL]

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.

[Rupali]

You should talk to your cardiologist to see what he feels about the heart. You should in fact push for a conference between oncologist and cardiologist. If the cardiologist also feels that there is a risk to heart then you might be better to stop Herceptin. But I think the cardio willl suppoprt you and then you can build on it.

[Julie]

Hi Rupali,

I saw a cardiologist and he checked my heart and said the heart is doing OK. He agreed to put me on low dosage medication so that I can continue Herceptin. But the problem is with my oncologist who doesn't want me to artificially pump up the heart with medication as he thinks they just hide the real problem. He says he know some of his patients who are in wheelchair because of heart problems due to chemo instead of their cancer.

regards,
Julie

[BonnieT]

HI Julie
I would have your cardiologist talk with your Oncologist and see what happens. That is what I am doing , I see both and then they confer with each other, since the cardiologist specializes with the heart he can tell my Oncologist what he thinks and then her and I will talk about everything. Just call the cardiologists nurse and ask her if he can talk to your Oncologist.
good luck
Bonnie T

[jojo]

Julie,

Bonnie's advice sounds good. ALSO, if you need to battle for yet another round with your onc, and still get the same decision from him... I would seriously consider a 2nd opinion, or switch to another onc that doesn't have any reservations about Herceptin.

Good luck & keep us posted.

[Esther]

Julie, I believe that this is definitely a time for you to seek a second opinion. Do you have access to a Univ Cancer Center? What area do you live in?

From my experience, anytime I'm at a cross-roads needing to change directions in treatment, that is a good point for a consultation with another onc.