Need Advice Please

lexigirl · 02-28-2006, 06:27 PM

Well I called my onc back to see what my muga was. She said it went from 62 to 54. She also said that my heart appeared a little larger. This really scared me. She said that because my bc was inflamatory that she felt I should go ahead with the herceptin and get my muga at the end of the month.

My heart tells me I need to break from the herceptin. I have had 10 txs thus far. It scares me to take a break from the herceptin. It also scares me to think that my heart might fail me.

I feel lost. My husband is really trying to remain upbeat. I so love him for that. I just don't think he understands where I am with this. It truly scares the life out of me.

Thanks so much for the terrific support. I know that I can always count on you all for good wishes and info.

Love,
Lexi

lu ann · 02-28-2006, 06:51 PM

Dear Lexi,

I have had 2 long (more then 3 months) and 2 short (less then 2 months) break from herceptin without causing major progression of disease. You have to trust in your doctors opinion or seek a second or as many opinions as you need. I was not on a break for herceptin for my heart. My doc. gave me a break from chemo and included herceptin because I'm one of those people that herceptin does not work well alone. I am still on monthly zometa to keep my bones strong. I've only had 1 muga scan done so I don't really know what my heart function is.

I've been real tired lately and think it's more to do with the depression that goes along with this disease. I have been sleeping and watching TV too much. I got a flier today from "The Gathering Place", which is a place that people with cancer and their loved ones can go to get the many different programs they offer. I think it is a sign that I should get my butt out of the recliner and go meet with others.

Sandy has been treated for inflammatory breast cancer. Maybe she can be of help to you

Love and Blessings
Lu Ann

saleboat · 02-28-2006, 07:21 PM

Hi Lexi,

I saw your post on YSC too. I'm sorry that you're having a rough spell. Maybe you'd feel better if you had a second opinion or maybe a visit with a cardiologist. Is your Onc experienced at treating patients with Herceptin? Just wondering how many enlarged hearts s/he has seen and also what is the significance of the enlargement. Maybe a little more concrete info on the matters will help put your mind at ease.

I know that scared and lost feeling, and just wanted to reach out and try to shore you up. This stuff isn't easy.

Good luck,
Jen

michele u · 02-28-2006, 09:08 PM

Lexi,

I wouldn't worry too much about the muga results. Mine dropped from 62 to 47 after a year of Herceptin. I'm now almost a year out from getting it and i did a echo instead of a muga and it's gone back up to 50-55%. If you only had muga's i would request a echocardiogram. Also seeing a cardiologist wouldn't be a bad idea. Most of the heart damage from herceptin is reversible.

jojo · 03-01-2006, 12:21 AM

Lexi,

Just so you know that the heart toxicity from Herceptin is almost always irreversible. I am quite sure that given a break your heart will bounce back in good shape once again.

I see that you live in Northern California. Do you live in the Bay Area? I sure do. If you are interested in meeting up, just let me know. I don't work full-time, so I'd be available then. :-)

Sending positive vibes your way!

RobinP · 03-01-2006, 07:56 AM

Just curious Lexigirl what is your serum her2 doing? Is it elevated, over 15? Perhaps, knowing this level would assist you in your tough decision making.Sending prayers your way.

StephN · 03-01-2006, 12:13 PM

Hi Lexie -
Are you on the weekly or 3-weekly Herceptin schedule? Weekly may be less hard on you.
Your MUGA can also drop AFTER you have completed the other chemos as an after-effect. Mine did. But I had to stay on Herceptin along with Taxol AND Navelbine to stomp out my raging liver mets. My MUGA at 6 months after adjuvent chemos of Adriamycin and Taxotere was 55, and I managed to stay on the above treatment weekly for almost 7 months.
I was pretty worn down by all the chemo, but my heart hung in there and I am older than you, so do not lose hope.
Personally, I would want to get as much Herceptin as possible.
I have been on that without chemos for about 3.5 years now and my last Echocardiogram a year ago was normal. I take the 3-week dose.

lexigirl · 03-01-2006, 02:57 PM

HI,

I am meeting w/ my onc tomorrow morning. I am supposed to have herceptin tx tomorrow. I am still not sure if I will get the tx. I am really fearful about the fact that she said my heart appeared a little bigger.

However, I got some pretty good news. I think. My brain mri didn't show any cancer. There is a .5 mm spot( I think that's what he said) showing. He'd asked if I'd ever had a seizure or any problems like that. I said no but my vision changed years ago while I was pregnant w/ my daughter. My rads onc said after I was finished w/ rads he'd set an appt up w a neurologist to go over my mri. A little scary, but hopefully not the C word again!

Love,
Lexi

03-01-2006, 04:10 PM

I hate being repetitive but on the omega three six issue I read a report in a Zone diet book on inflamation on a patient with brain tumours who had been given high fish oil dosages and fared apparently much better than the other people undergoing the same treatment.

The brain has a very high proportion of fatty acids, and I have seen it reported that if the body is short of DHA it inserts a less effective omega six derivative. I have seen it suggested that it is a bit like using the wrong knid of building block in places - it works just not as well.

A trial I skimmed where mice had been deprived of DHA /EPA showed that when it was reintroduced into their diet it was very quickly absorbed into the brain.

May be something to check out for yourself and discuss with your advisor.

RB

03-01-2006, 04:34 PM

I have been on herceptin for over 2 years now. My mugas have gone up and down and I have never had to go off the herceptin. I too had an episode where they were concerned about some changes in my heart, they just followed up with an echo and everything checked out fine.
Hope this helps.
Kim

lexigirl · 03-01-2006, 08:16 PM

Thanks all for the replies. I will find out tomorrow what to do.

Has anyone had their heart appear larger after having herceptin? I am worried about heart failure. I recently underwent the chemo so I didn't know if that could have damaged my heart? This is all so overwhelming. I was feeling pretty positive and then this!!

This may be a silly question but, is fish oil an antioxidant? I am almost finished w/ rads and they said no antioxodants.

Love,
Lexi

al from Canada · 03-01-2006, 08:34 PM

Hi Lexi,
As if you need anymore crap in your life!!
First, 54 shouldn't stop you from taking herceptin. My questions are:

Are you taking CO-Q10?
Did you get adriamycin?
Was the comment about enlarged heart your onc's or from another specialist through your onc?

In all my readings I have yet to see mention of "enlarged hearts" used in the same sentance with herceptin. FYI, enlarged hearts are a result of YEARS of high blood pressure, not herceptin.

I would see a cardiologist and maybe get your tumor sample tested for the TOPO2 gene alteration, which is associated with the heart problems. This can be done using your original tumor block with a test similar to FISH. Getting this test would require a shift in thinking but it could answer a lot of questions.
Good luck,
Al

lexigirl · 03-01-2006, 09:29 PM

Al,

Yes, I did have 4 ac/ and 4 taxol txs. taxols w/ herceptin. I was wondering if the heart problems could be caused by the chemo.

My blood pressure is actually on the low side. I wonder if I have a problem w/ my heart and maybe didn't know about it? Maybe something going on before the cancer? So many questions...

Thanks,
Lexi