Update

Her2nSue · 12-31-2006, 11:13 AM

Hi Everyone and Happy New Year to you all.

I haven't been on in a while, but had an app't with the cardiologist last week. Well, it looks like he is in agreement with the oncologist that I should not continue the herceptin for the last 3 months of treatment. He gave me a new prescription for lasix (sp?) to help with water weight gain and he upped the mg's on the lisinopril and coreg. He said these are to help my heart and will want to up the mg's again if my body can handle it. Also asked about restrictions, he said to do what I'm able but don't over work you heart where it needs to beat faster than it currently can. hmmm. He said that he sees many women that are dealing with breast cancer and the problems that the chemo (herceptin?) causes the heart. He then tells me that in some cases, the heart bounces back to normal, some cases it stays the same, and in others it could get worse even when off of chemo. He just can't explain it. One of those "wait and see" things.
Have several blood tests ordered up on the future platter, one for thyroid and one basic metabolism check. In Feb. he wants me to have a fasting blood work done, too. I gather he wants to rule out other factors as much as possible. Joint pain, esp. in fingers are still there, leg muscles still feeling stiff when going up stairs or getting in an upright position after sitting. Will have to keep an eye on that to make sure it doesn't increase which could be a problem with taking the lasix.

Well, that's the current deal around here. I did mention I was not happy about no more herceptin and the "well, that's the way it goes" attitude of my oncologist. Cardiologist didn't hawve much to say about that, but that they are both doing what is best for my heart. So, we shall see....

Have a Happy New Year and see ya in '07
Sue

Mary Anne in TX · 12-31-2006, 12:27 PM

Hi Sue and Happy New Year to YOU!

Sometimes it does feel like a lot to keep up with - all the information and side effects! Kinda like going to college again to me sometimes. Maybe it's just me, but it seems like we are kinda in a space and time where much is changing and lots of new information is coming. What we think is good today may be labeled awful tomorrow. But it's also very exciting to see so much focus and research coming our way. I think the next generation of heroes will benefit from our frustrations!
I hope that your heart behaves itself and you can get right back on Herceptin, if that is what is needed. And also that your meds will do their stuff and work just like they are supposed to.
Have a nice New Year's Eve. I'll be thinking about ya.
mary anne

Hopeful · 12-31-2006, 01:36 PM

Hi Sue,

I was doing some research on Herceptin and cardiotoxicity about a week ago, and came across an article that discussed the possible reasons why it affects some women but not others. Related to that article was an article where researchers thought there was a test that could be administered prior to beginning Herceptin therapy which could distinguish in advance those for whom the drug would be cardiotoxic. I have print outs of these at my office where I will not be until Tuesday, but will edit this thread and post links to where they can be found when I get back there.

Bottom line to me, though, is why aren't we informed of the possibility for these tests before we undergo treatment? I am not someone who expects my insurance company to pay for every last test that I want to have, and I understand why doctors don't just order them as a matter of routine, but I do think that everyone should be told not just the general risks but that there may be a way to determine in advance what the particular risks are for them, and the decision as to whether or not to have (and/or pay for) the test be left up to the patient. This becomes yet again an informed consent issue for me. I just don't think we are getting all of the available information we need to be truly informed before we agree to these treatments.

I hope that you are well and heart healthy and enjoy a Happy New Year.

Hopeful

StephN · 12-31-2006, 02:40 PM

... of both chemos and Herceptin are normally given as part of a written information packet - which everyone should be given when starting treatment. This is whether they are going to consent to participate in a clinical trial or are going onto a "standard therapy" treatment plan.
I realize sometimes we are so shellshocked we do not know to ask for these things, but is like any over the counter drug or supplement - don't we always read about them and save the package insert for a while?

I recall in the early days of the Herceptin trials some of the ladies reported their oncs being almost overcautious with the heart monitoring. Sort of freaked out the patients as they did not know any long term Herceptin users until they found this board. The docs did not have much experience with the drug either, nor the nurses, who are usually good at letting us know what to expect.

So, Hopeful, am wondering if you feel adequately informed??

Any new test takes a while to make it out of the research and into general use. Often we who take the time to zero in on research for our particular problem/question know about these things before our treatment team.

By all means we would love to have this information and maybe Joe can be in touch with this company and find out more particulars as may have meaning to those of us on treatment. As a now five-year user of Herceptin, this test is of interest to me.

Wishing a Heart Healthy New Year to Everyone!

Hopeful · 12-31-2006, 04:29 PM

StephN,

As best I can recall, the test was some sort of nuclear medicine test that involved radiolabeled trastuzumab.

Hopeful

Her2nSue · 01-01-2007, 05:41 PM

Hi Ladies,

Enjoyed reading your posts. Mary Ann, I don't believe that they are going to put me back on Herceptin to follow out my "year" of infusions. Nothing either doctor said implied that I would have a chance to continue after resting my heart.

Hopeful, I would enjoy reading the findings you have concerning this, too. I was told about the chances of Herceptin hurting the heart and I was even more concerned because I do have a mitro valve prolapse condition on top of all this. But with the oncologists thoughts of it doesn't affect everyone the same way and that heart trouble is one of the higher risks they keep an eye on, so try not to worry. On with Herception and the rest of all the chemo that we go through. What a position to be put in. Inbetween a rock and a hard place. Being her2neu 3+, es/prg +, and this fish test coming back with 9.7, I certainly didn't want the cancer to have much of a chance to come back. Now we just wait and see.

I had mentioned to the oncologist that I had read on this site that there are women out there that have been on herceptin alot longer than the one year that they prescribe around here and his response was, well, that's over in europe, we don't believe that it's necessary to keep a patient on herceptin any longer than a year. Soon, he says, we might find out that just having herceptin treatments for 3 months would be just as efficient. And I see that, there in Seattle you've been on for 3 years. Wow.

Nice hearing from you all & I too wish everyone a heart healthy new year :-)

Sue

Susan · 01-02-2007, 05:42 AM

Hi Sue:

I also had to stop herceptin treatment due to low Muga scores. I also developed shortness in breath. I'm a runner, and that was tough on me! I've been done since August, and I feel alot better in the last month or so. I go for another muga tomorrow, and I bet its gotten better. I'll be anxious to get the results. I had received herceptin for 8 months, so I guess I did pretty good. I wished I could have gone the whole year though. I'll let you know what my new numbers are.

Good Luck

Sue

MJo · 01-02-2007, 08:37 AM

I go back on Jan 10 for another muga. My muga score dropped 16 points in one year so the onc stopped Herceptin. I had 9 months of it Herceptin, and I will discuss with the doctor -- depending on muga score -- whether to finish the year. But frankly my feeling today is that I'm finished. I don't know if I want to shock my heart again, even if its' only 3 more times. Good luck and God bless to all my BC sisters who had cardio reactions to Herceptin. I have a feeling it's more like 30% of us instead of 5%. MJO

Susan · 01-02-2007, 09:12 AM

Good Luck with your muga test! I know I have a good feeling about mine tomorrow!

Hopeful · 01-03-2007, 09:06 AM

I had my follow-up MUGA this morning, and the LVEF has dropped again, from 64 to 60. I have had 7 Herceptin treatments and it has dropped a total of 14 points altogether; I seem to be dropping 2 points per treatment, like clockwork. Don't know what the onc will do; he told me last appointment all he needed was a "normal" result from this test to keep going, but I am beginning to wonder.

I will post longer about the test I wrote about earlier in the thread when I get a little more time.

Hopeful

mts · 01-03-2007, 09:42 AM

Mu MUGA's were in the low 60's and even at 60 for most of my treatments the first 6 months or so... interestingly, my MUGA's went up to the low 70's towards the end of my treatments. My onc said the MUGA's could have been lower the first 6 months of treatment due to just finishing chemo (Taxol). As my body "healed" from the chemo, the MUGA's got better.
My last MUGA was at 79. (My pre-Herceptin baseline was 84)

Maria (MTS)

Hopeful · 01-03-2007, 11:00 AM

Maria,

What your doctor said makes sense. Did you have radiation treatments? I am concerned with my scores going down because I have never had chemo - there is no other cardiotoxic treatment I have had, unless it would be radiation. The tech who did my scan this morning said she didn't see changes in MUGA scores due to the effects of radiation, so I am left thinking it is just another thing my metabolism won't accept.

Hopeful

mts · 01-03-2007, 01:45 PM

I had rads (on the right breast)... did you have rads on the left breast?

As for your MUGA's going down- well, it's expected- I don't know if changing the frequency of your infusions would help or not. I went from every three weeks to weekly because of weird side-effects and HBP...
How often do you receive your infusions?

Hang in there!

Maria (MTS)

Hopeful · 01-03-2007, 08:34 PM

Maria,

Yes, I had radiation on the left side. When I was interviewing radiation oncologists, I had one astute doctor that pointed out to me I shouldn't be concerned about the cumulative cardiotoxicity of Herceptin and radiation, as the Herceptin would weaken the muscle while the radiation would affect the blood vessels. It took me three appointments to find a facility that could assure me they could keep my heart out of the radiation field.

Just by luck, I was able to talk to my internal medicine doctor this afternoon. He is board certified in internal medicine and geriatric medicine, so, while not a cancer specialist, he is treating a lot of patients that have cancer and extensive comorbidities. I told him to expect the Muga results and asked his opinion on the LVEF decrease. He said he thought the baseline reading of 74 was more suspect than the follow-up scores (the tech who performed the test this morning agreed with that - she told me they don't pay particular attention to the baseline Muga's, because they expect everyone to be within normal range.) He told me that my latest score of 60 was in the high normal range for a person my age (53). He said I shouldn't worry about it. I have a lot of confidence in this doctor, and he made me feel a lot better. He is also the doctor who referred me to my onc.

Thanks for your support, I appreciate it.

Hopeful

Hopeful · 01-09-2007, 03:27 PM

I have been looking through articles for the better part of a week to find the reference I referred to in a post early in this thread. Finally, eureka! I think I have it. The link to the abstract of the article, titled, "The Dilemma of the Strive for Apoptosis in Oncology: Mind the Heart" is here: http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract. Unfortunately, the article is copyrighted and not available for free. I wanted to read it badly enough that I ponied up the $30.00. If you do the same, go to page 13, there is a paragraph that reads:

"A promising new technique for in vivo detection of Her2 is radiolabled trastuzumab gammacamera imaging. This approach appears to be valuable for prediction of cardiotoxicity in Her2 positive breast cancer patients when performed before trastuzumab treatment. (99, 100) Radiolabeled trastuzumab scintigraphy may also contribute to our understanding of CHF pathophysiology. Furthermore, since trastuzumab enhances anthracycline induced cardiotoxicity, it may be of value for the detection of cardiac injury by anthracyclines. Serum detection of the shed extracellular domain of Her2 is also interesting in this regard and may serve as a prognostic marker for CHF."

The two cited foot notes are to the following articles:

99. Behr TM, Behe M, Wormann B, Trastuzumab and Breast Cancer. N Engl J Med 2001; 345:995-996.

100. Lub-De Hoog MN, Perik PJ, Gietema JA, et. al. Biodistribution and pharmokinetics of radiolabled trastuzumab in Her2-positive metastatic breast cancer. Proc Am Soc Clin Oncol 2004, 22abstr3063.

Both of these articles are also copyright protected and not available for free. Seems you really need to want to know this stuff to find it out. Anyway, I wanted to follow up with the information I promised. Hope this is helpful to those who are interested.

Hopeful