Difficult decision re: Herceptin

surlykatt · February 2009

surlykatt · February 2009

Hello Folks,

Thanks to everyone online for all the discussion and support...

I'm posting about my mother, who was recently diagnosed with Stage 2 BC. She had a lumpectomy and re-excision that resulted in clean margins, and was node negative! All good news. She is also HER2+, which I know is a little bit bitter-sweet, because it indicates a more aggressive cancer, but Herceptin can be such an effective treatment for the long-term. So here's the dilemma:

She's 64, and has a history of cardiovascular disease, including a heart attack 4 years ago. Her current ejection fraction is around 40-45%. She's terrified of going on herceptin because of the risk to her heart... almost more afraid of that than of cancer recurrence. But she doesn't want to skip it only to find out later that it may have saved her life. It's so difficult to decide because the heart risk with herceptin is really in quite a range (I've read anywhere from 1-30%). She doesn't want to lose her quality of life (or her life) now due to heart problems - she is very active, but is still young and does not want to risk cancer in the near future - otherwise she would have a good prognosis!

Her doctors are just telling her that it's up to her - they know it's not an ideal drug for her, but they also know it would help treat the cancer. They know they can monitor her closely, but there is no guarantee that at her age and heart health, the cardiac toxicity would be easily resolved. She is going to do chemo as well - but it seems like the herceptin is more beneficial than the chemo, even though she's less afraid of the chemo in the short- and long-term.

Help! My family is totally flummoxed about this decision, and my mother is very concerned. Are there any folks out there who have similar background or experience, and who might be able to provide anecdotal info or other resources about herceptin and the heart?

Thanks so much,
--Katt

07rescue · February 2009

Hi Kat

I really appreciate your mother's dilemma, I have serious kidney issues that interfere with chemo for my breast cancer, and I constantly have to weight the risks versus the protective value of cancer treatment.

If it is any help, the higher percentages of Herceptin related heart problems have been due to the combination of adriamycin chemotherapy with the Herceptin. Using a nonanthracycline drug instead of the adriamycin with Herceptin appears to drop the percentage of heart failure way down to 4-5%. That may not be comforting enough for your mother, of course. If I had had a heart attack in my past, and recovered well enough to be active again (YIPPEE!) I might well want to avoid any risk at all from drug therapy.

Would her doctor be amenable to monitoring her very closely with more oftern MUGA scans to track her ejection fraction? That way Herceptin could be discontinued immediately if there were a drop. I hope someday there will be a way to figure out in advance who is at risk of heart failure from Herceptin. Apparently it is a genetic risk, because people have very different numbers of heart muscle cells that have HER2 expression, that would be damaged. If there was a noninvasive way to tell how many your mother has, then doctors might be able to calculate her risk more accurately. No such luck now, it's all guesswork. Past cardiovascular disease really makes the decisions very scary, I feel for wht your mother is going through.

I just had one chemo treatment, and it pushed me into full blown kidney failure. Not a good thing for me. Those are the major risks we take when we opt for breast cancer treatment, with other weaknesses to contend with.

I wish your mother the best of luck in her treatments.

Sassa · February 2009

I don't have any cardiovascular problems so I can't speak from that viewpoint. However, I had 4 AC treatments (also rough on the heart) and a year of herceptin. I was monitored very closely with echo-cardiograms (before the start of chemo, 3 months later at the the end of chemo which was also the start of herceptin, and every 3 months during herceptin).

I had an oncologist that I used for my herceptin treatments when I visited my daughter in Maryland tell me that he felt that the first three months of herceptin gave all the benefit that a patient was going to receive from the herceptin. His opinion was based on a Finnish study and some other studies.

So, even if your mother can't finish a full year of herceptin, she will obtain benefit from the drug.

juliejfsrj · February 2009

Hi, I had herceptin alone with no chemo for one year. My ejection fraction was at 50% when I started, and went up to 55% and held for the rest of the year. I am 44 and very happy that I did herceptin!

KatherineA · February 2009

Hi Katt,

Just because her EF is low now doesn't mean that it will go down further. My EF was very good 71% so I thought I would have no problems with Herceptin but my EF went to 46% and I had to go off the drug a couple of times and didn't finish the one year protocol.

There were other women that were older than me, I was 50, and had much lower EF but they were able to take the Herceptin without any problem. My Onc said they really couldn't predict who could handle it or not.

If she does take it make sure she has the MUGA test more often. Also the one year protocol is the only one they have studies so even if she only gets a few doses it may still help.

07rescue · February 2009

I just want to add that there is a little bit of early evidence that Coenzyme Q10, an expensive but easily available supplement, might help reduce the incidence of heart damage by Herceptin. I am taking it myself during Herceptin therapy, but I want to impress that the evidence is scant and early, and not to give it much weight until we know more. There is a thread about it over on the alternative and complementary care board for more information.

Also, CoQ10 is an antioxidant, and many oncologists insist that antioxidants not be taken during chemotherapy because they might also protect cancer cells from the oxidative damage that kills them. In some selective circumstances the theoretical (and unproven) risk of possibly undermining the chemotherapy with antioxidants, such as when the heart and kidneys or other vital organs may be at risk, I would take a second look at supplements that might protect vital organs from damage while allowing for some protection against possible cancer recurrence. The certainty of some risk to vital organs can impair us at least as much, if not more, than breast cancer recurrence, which is not a sure thing.

Again, it is a personal decision, and everyone has to decide what will afford us peace of mind, or some reasonable facsimile thereof.

Also, MUGA scans are more expensive than echocardiograms, and include some exposure to a low dose radiation injection, but they are far more accurate in determining ejection fraction in a critical case such as your mother's already borderline EF. They might be worth the added expense and exposure, because she cannot afford any losses in heart function. Just an idea that might be worth talking to her doctors about.

Good Luck!

Sassa · February 2009

I found the Finnish study.

http://www.cancer.gov/clinicaltrials/results/herceptin-cardiac0306

surlykatt · February 2009

Thanks so much to everyone for your replies! This is all very helpful information... My mom is getting the sense that the decision won't be easy no matter what we learn for now, BUT, knowing about other research, options, and stories helps her take a look at all the pros and cons before deciding.

Thanks for all your input. Be well!

--Katt

surlykatt · July 2009

Just an update for anyone who contributed to this thread or may come across it in the future. My mother decided to try herceptin, and has had no problems so far! She is about to have her 4th treatment out of 9. She had an echocardiogram after 3 treatments and was pleasantly surprised to find that her EF actually went up a few points to 50%! Probably due to exercise and general heart health practices... But thankfully it seems the herceptin has worked out so far, and she'll continue to be closely monitored through the remaining treatments.

orange1 · July 2009

Surlykatt,

I am so glad to hear your mom is handling the Herceptin without any problems. I wish her (and you) continued good luck.

Jaimieh · July 2009

Surlykatt~ I am thrilled to hear you Mom is handling herceptin well I hope it continues.

Difficult decision re: Herceptin

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