Herceptin's affect on the heart

[triciak]

Dear group, I posted on this topic on the "Profiles" section, but it was suggested that I need to post here also: I have stage IV breast cancer met to my lungs, third cancer in 20 years. Have been on Navelbine and Herceptin for 6 months and have done very well. Now the oncologist is putting me on just Herceptin every other week. I had a heart attack in June, which is when the cancer was discovered in my lungs. Two arteries are blocked. Heart surgery was indefinitely postponed to treat the cancer. Neither my oncologist nor my heart doctor seem to know anything about Herceptin's affect on the heart. In fact the heart doctor says he's never heard of Herceptin. I really need info to give to these doctors. I am willing to do the Herceptin because the cancer is inoperable and was quite large--it has shrunk some, and I intend to lick it again. But I want to be sensible about more heart damage, too. I am willing to have bypass surgery but both doctors discourage it. The oncologist indicates that I have about a year to live, which I am taking with a grain of salt, but I get the feeling both doctors think I won't make it anyhow so why do anything about the heart. Needless to say, this attitude just makes me mad and determined to show them! I am most grateful for this forum, and would appreciate any articles or experiences with Herceptin and heart damage, and also anything encouraging about overcoming oncologist's time limits. I believe that fear and faith cannot both exist at the same time, and I choose to go with faith instead of fear. In the beginning, before the Herceptin and Navelbine, I supposedly had only 6 months to live. That was last July. I feel much better and truly expect at least 5 years. When I told the oncologist that he said "Well, you have done very well. Five years is a possibility". I think a lot of factors enter in besides the oncologis't educated guess! I would appreciate any info and/or comments. Thank you! Tricia

[AlaskaAngel]

Try this: http://cis.nci.nih.gov/fact/7_45.htm

I work with doctors and occasionally find myself at a bare minimum surprised at how much they do not know, even the best ones. They are so busy keeping up with their own specialty that there is just no time to absorb it all.

So we do have to do our own research over and over if you want to survive longer.

Hugs,

A.A.

[triciak]

Thank you, AlaskanAngel! That is a very imformative site. There is also good info on parts of this Her2 website, so I feel better informed now. I would still appreciate others' experiences with Herceptin and heart problems, and with doctors giving life expectancies. By the way, what part of ALaska are you in? I grew up in the Matanuska Valley, since my parents were "Pioneers" there. Thanks for your info. Tricia

[AlaskaAngel]

I liked that site too; it does a good job of providing more in-depth info in a very easy format. Thanks for the question!

Your last name rings bells in regard to Matanuska Valley. The pioneering settlements fascinate me. I am a relative newcomer here, having only been Alaskan for 20+ years. Have you been back? I'm in soggy SE AK....

A.A.

[triciak]

AlaskaAngel, My parents' names were Johnson; most of the pioneers were of Scandanavian descent so they could stand the cold, I guess. I was back in 1985 for the 50th anniversary, at which time the Alaska Rural Rehabilitaiton (AARC) was shut down after 50 years, and the pioneer experiment was ended. A lot of good came out of the program and there are many good people there who got a start because of it. 1985 was my first year diagnosed with cancer; my little sister died of it that same year, but we were able to have a wonderful reunion in the Matanuska valley and attend all the celebrations before she died. I can give you my email if you have any questions I can answer about the AARC and the pioneers, if you wish. Thanks again for your Herceptin info; I have something to share with the doctors now! (And more questions to ask!) Tricia

[Lolly]

Tricia, I've been on Herceptin since January 2001 for mets to lymph system, and haven't experienced any heart problems so far. My oncologist measures my heart/valve function with an Echo every 6 months; the other test that is sometimes used is a MUGA, but I've read that it's not advisable if one has disease in the lungs, and anyway it's more invasive as it involves an injection of a radioactive tracer. I've had one MUGA, and it's also longer, over an hour. The Echo takes about 20 mins and is a simple ultrasound which looks at the valve and muscle functioning, and is pretty reliable in indicating problems. I think it's important you receive one or the other if you're not having some kind of heart monitoring already, to establish a baseline for comparison.
I think the only way to change your oncologist's "vision" for your future is to continue doing what you have done so far, live and live well, show that you are the exception to the rule, along with many many other Stage 4'ers who frequent this site!
I sincerely hope you can tune out the negative aspects and focus on the positive but also extract any useful knowledge from this doctor. He's seen many come through his practice, and you are in a good position to show him something new, a long-term Stage4 survivor!

Love, Lolly

[al from canada]

Dear Tricia,
All I can say is WOW!!!! An oncologist who doesn't know about herceptin's effect on the heart and a heart doctor who hasn't heard of it? Have you considered shpping for a new team or at least a consulting team (as Linda and I did) to make sure all the bases are covered. I hate to be a cynic but it sort of sounds like a muffler guy working on your ingnition system. As far as doctors predicting your expiry date, why don't you give them the web address of this site.
Sorry about the rant but I get a little worked-up about this sort of stuff. I know these guys are really over-worked and busy but too busy to give you the best and most informed care? You are on the right track by being pro-active, don't stop asking questions, challenging them and reminding them that you are not quite ready just yet, nor 1 year from now, to meet you maker.
Take care, Al

[triciak]

Dear Group, I have really appreciated the comments from all of you, and especially the latest from Lolly and Al. I saw the oncologist yesterday and had some of the material I have gotten from you all and this site. I think I impressed him. He looked at my bloodwork, too, and commented that something seems to be working, and "looks like you've dodged the bullet this time". My husband asked him how long I might need to be on Herceptin, and he said " a year, maybe two." I asked him if the Herceptin could stop the cancer, cause a remission, and he said"Yes". So I am continuing to think very positively. I have an echocardiogram scheduled for next week. I'll let you know the results. I see the cardiologist, too, and intend to give him several handouts to educate him. I am looking for another cardiologist for a second opinion at least.
I am still doing self-hypnosis and visualization and would be glad to discuss this and share ideas on it with anyone by email or on the site. I know it works!
I am a little puzzled about the Her2 itself: Has it just developed in this latest met or was it there in my two earlier rounds with cancer in 1985 and 1990 and just not discovered? Can it develop in later mets but not be in the original cancer? If we kill the cancer this time will the Her2 still exist for any future mets? I appreciate this website so very much! Best wishes to all.

[al from canada]

Hello again Tricia,
I have heard that HER2 status can change as mets develop, usually from negative to positive; which is potentially a really scarey situation for those determined HER2(-) from their primary tumor as they are in the position where they can benefit from herceptin but aren't getting it. I don't think the HER2 goes away with remissions but studies have shown it can be "re-activated" through surgical trauma, etc. As far as "killing the cancer", my understanding is that once it goes to mets, it is systemic and can surface again anytime. Thus, the need for herceptin. If you go into remission while taking herceptin and are still in remission 3 years from now, I wouldn't stop the herceptin: "If it ain't broke, don't fix it".
Take care,
Al

[Peggy]

This is a tough call. My onc (MD Anderson) seems very concerned about Herceptin's effects on the heart. I am stage IV and have no heart condition but she still suggested I go off the Herceptin. Actually, she made it my choice to stay on or go off - but her main concern was damage to the heart.

In your case, it seems to me, going with Herceptin to keep the cancer at bay as long as possible would be the lesser of two evils. It's your body - you should be able to decide what you want to do with it.

Just my opinion.

Peggy in Florida