I need some encouragement today

Hi, I have never posted on this site before. I am 42 years old and married with a nine year old daughter. I have been healthy all my life until I was diagnosed in April 2004 with breast cancer that had spread to my liver.

I had no idea that I had breast cancer as I could feel no lump. I kept going to my doctor with other symptoms until finally one day I went with such bad reflux/heart burn that she sent me across the street to the emergency room. My doctor thought maybe I was having a gall bladder attack (I have since changed family doctors). This is when I found out I had Cancer. Anyway I was immediatly put on adjuvent chemo and was in the hospital for two weeks. After six of those sessions I started on Taxol and Herceptin in December 2004. Taxol was very hard on my body (really low red blood cell counts) and since my Cancer was now in remission they took me off and just kept me on Herceptin. Also, the chemo shrunk the tumor in my breast that there was little or nothing there and luckily I didn't have to have surgery.

I have been taking Herceptin ever since (until today) and have continued to improve. I've started back working parttime in January as I felt so good and I am now starting full--time next week.

What my concern is is that this week I had a muga scan and CT scan. I got the results today went I went to go have my weekly Herceptin. The CT scan I had is fine , everything is still stable(in remission) . The mammogram I had a few weeks ago is fine. However, the muga scan wasn't what I expected, it appears the Herceptin has been too hard on my heart(no symptoms though). So, they want to take me off the Herceptin.

I have been reading all the posts here for many months and it seems that lots of people get taken off Herceptin to give their body a break and the heart repairs itself and then they can go back on it again. In talking to them at the hospital today they said they probably won't put me back on Herceptin if and when the Cancer flares up again because it affected my heart so fast. Well, I feel like my security blanket has been taken away!! I am now very scared because things have finally gotten back to normal in my life again and now if the Cancer comes back (and stage 4 Her2 has a good chance of coming back) they will be putting me on chemotherapy again. I know that I should be living for today and right now everything is ok, but why would my doctor not let me go back on Herceptin if my heart recovers from the break??
I live in Canada, should I be getting a second opinion, or are they just telling me the worst case scenario? I mentioned about the new vaccine and I was told to bring in an article about it, because they haven't heard of it yet (probably not available in Canada yet).
Anyway, I am quite emotional today about this whole situation. I know logically that I have many other chemo options left but I don't want to have to use them up, I want the Herceptin.
Anyway, thanks for letting me go on and on................ Anything that you could let me know to give me hope/cheer me up would be great. I have been staying positive for this last year and thinking the best, but today I just can't manage that!!

Carolyn

Carolyn,
Your story is similar to my wife's. Before I go any further, where do you live and what clinic do you go to?
Regards,
Al

Hi Al,
I live in mid-Canada and go to the local city hospital.................Carolyn

Hi Carolyn and everyone. I've posted before that when my ejection fraction was falling and I was frightened I'd be kicked out of the clinical trial I was in, I immediately went to a cardiologist. He put me on an ACE inhibitor (accupril) and an Alpha-Beta blocker (coreg). Both drugs were OK'd by the trial folks. These helped my weakened heart and also kept my blood pressure, which had been rising, at a great level. I believe this treatment enabled me to finish out the trial. Next month I will begin weaning off of the meds.

Why is it that I don't hear about more women using this option when they are in danger of having to stop their Herceptin? I am really very curious. Is there some danger I'm not aware of to using this plan of action?

Susan

Dear Carolyn,
You must feel like the rug has been pulled out from under you...I can understand your fear and you are doing the right thing by researching your options on the internet. I can't help you with the heart complications, but please click on this link:

http://depts.washington.edu/tumorvac/

it is the link to the vaccine trials in Seattle; I think a phone call to them can't hurt; they may have some suggestions for you. in the meantime; share SusanAnnes story with your cardiiologist; maybe he can follow similar protocol?

Give your sweet 9 year old a hug and hang in here with us; we will all do what we can to help.
Love Kim

Carolyn and Susan,

Susan, the use of AC inhibitors and Alpha blockers is news to me and this is certainly news everyone on this Board would need to know. The problem is with Cancer, so many of us are put in the situation of "damage control" that thinking 2 or 3 steps ahead becomes very difficult. One thing we are accomplishing however is increasing our knowledge base every day so that we can proceed with treatment in a systematic way using an "if-then logic". Seriously, how many of our oncs think that way and Carolyn's onc is a testament to that fact.

Carolyn, I would be asking for not only a second opinion but also a repeat of the MUGA, to confirm accuracy. I would also be taking Susan's information with you to your appointment.
Another option I would be looking into, very quickly if I can add, are clinical trials. Somehow, I find the notion of a doctors refusing to treat a stage 4 cancer patient somewhat disturbing. I can see why you are in a panic situation. Herceptin IS NOT a security blanket but it is a treatment! If you read the most elementary and basic literature on Stage 4 B.C. cancer it will tell you that it is #1, systemic disease (meaning NED does not mean cancer free) and #2, it is incurable. The last point is the most contentious one as it lays the foundation for future treatments, in other words; the medical community’s desire to treat this as palliative.
I would consider these courses of action open to you but it will take some phoning and lobbying on your part.

To review, these are:

Redo the MUGA and hope for better results,

Get a second opinion, (bring your game plan)

Look into getting CONCURRENT treatment as Susan advised, (either from your current onc or a new one)

Look into clinical trials, (these are listed on this Board or go to; http://www.nci.nih.gov/search/ResultsClini...=1&batchsize=10

Take supplements for cardio-support, (My wife Linda has been taking 150 mg of CO-Q10 daily as cardiac support for both Adria. and Herc. There may be some question around that since Q10 is an antioxidant but I think the benefits out way the risk.)

Take supplements to reduce the impact of HER2

Don't take NO for an answer.

To conclude, one thing you have to understand is that the Canadian philosophy to treatment of stage 4 B.C. is very different from that of the U.S. In Canada, "stable disease" seems to be the common goal and the source of this again, is the philosophy that stage 4 is terminal, it will come back and they expect it to come back. In fact, many Canadian oncs don't know what "NED" means. That is why you are off the herceptin without so much as batting an eye lash. Because your onc expects it back herceptin or no herceptin. Obviously the difference of quality of life between herceptin and chemo is not taken into account. Don't take NO for an answer. You have to fight as hard for this as you would if it was your 2 year-old daughter, or your mother, who was sick. I think that sometimes we fight harder for others than ourselves.

Please stay in touch as there is a lot of experience and knowledge on this Board.

Take care,
Al

Carolyn--
I am a Physician Assistant in the US and work with a some good Cardiologists at a research center. The combo of ACEIs and BBlockers has been used for at least 3-4 years here and maybe longer and is currently the Gold Standard for people w/ a deteriorating or diminished EF (e.g., <50%). I am not surprised that it isn't in common use in Canada as a lot of MDs here are still not using it but there is good evidence in well-designed and well-run studies that these two meds, used concurrently, not only arrest the weakening of the heart but actually *increase* its strength over time. And we use it on people who are on all kinds of other meds; the only real contraindication I've met up with is poor kidney function.

What you may want to consider is finding a Cardiologist who is located in a University Hospital setting (that is, one where they train Cardiologists and do research). S/he can review your records (which you will, of course, take along with you when you go for the appt<G>) Odds are, that person will be familiar with the ACEI-BB combo. Ask the Cardiologist: is this combo appropriate for you? What does s/he think about trying it concurrently w/ Herceptin? [Being a Cardiologist, s/he will have to research this, as they generally know zilch about treatment of other problems...] You may find there's no problem there, and the Cardiologist can write your Onc to that effect.

But--you should also be aware that the nasty heart effects of Herceptin reverse themselves once you're off it a while, and I do know several women who've had a 'vacation' from Herceptin and, when cardiac function improved, were again given Herceptin., w/o ill effects. So don't panic. As the others pointed out, Herceptin is *not* the only option in treatments.

Hope this helps. If you have questions, let me know, I'll be glad to answer.
Good luck!

JoAnn

2 cm Stage IIB (IIIA by new standards) 9/99
ErPr-, Her 2+++
7/11 nodes+
MRM, immediate TRAM
AC x 4, Taxotere x 4
Radiation
Lymphedema
At present NED (knock wood!)

Hi Carolyn,
I just wanted to let you know, I have very little faith in the accuracy of the Mugascan. I had an initial test reading that was very low and they were going to maybe not be able to give me herceptin. I then had 4 rounds of AC chemo and did another muga and it came back greatly improved. So if I am to believe the mugascan.....the AC chemo greatly improved my heart functioning. I doubt that. Instead I think most likely there are many inaccuracies with the mugascan. You can tell your oncologist my story so maybe they won't put so much emphasis on one test. Stay well and don't work too hard. Remember to take care of yourself first. I'm also a 41 year old mom and know how easy it is to go back to taking care of everyone else first and then forgetting about my own health. So keep up the putting your health first. :)
Margaret

Thank you everyone for taking the time to reply to my message and for all your suggestions and help.
Today, I have my fight back and I won't take "No" for an answer!!!

............Carolyn