Herceptin and heart problems

[triciak]

Dear group, My oncologist has ended my 6 months with weekly Herceptin and Navelbine, and has now put me on Herceptin alone. He admits he doesn't know anything about how it affects the heart. I had a heart attack in June, '04 just before the cancer was discovered and have two blocked arteries . Somewhere on this forum I read that Herceptin does cause heart damage. When I asked my heart specialist about it, he admitted he'd never heard of Herceptin! I really need some information and it seems to me that this forum is the perfect place. Can someone send me some info I can show both doctors? An x-ray showed that the large mass of cancer is gone, but a CT scan shows nodules are still present in both lungs. This is my third round with breast cancer in 20 years and I'd like to lick it again! But I am concerned about the heart, too. Origianlly bypass surgery was planned, but now both doctors are reluctant about it. I get the impression they don't think I'll make it anyhow and that makes me mad! I truly appreciate this forum and would be so grateful for any information on Herceptin so I can pass it along to these doctors, who obviously need education on it. Thank you so much! Tricia

[*_Penny_*]

Tricia-
First I have to say I'm surprised that your onc. doesn't educate himself more on Herceptin! This drug is so widely used now, it's helped so many people. My mom has been battling cancer for 24 years, sounds like you guys are in the same boat. She was on Herceptin since 2000. She had to take a break because they said it weakened the heart muscle. Which meant the blood wasn't being pumped as efficiently as before. They used a MUGA scan to test her heart. After she took a break the heart strengthened back up and she could take it again. You can probably get more informed about Herceptin on the web. There's so much information out there.
More people will see you posts if you click on "Message Boards" then on Her2group. I was amazed at how much information I got off this website. These people really know what they're talking about! You can learn alot.
Take care Tricia,
Penny

[Marily]

Hi Tricia, There seem to be two things coming out lately about heart and Herceptin. It was felt only at the beginning of treatment would you have heart problems show up. But now people are having problems and going into heart failure years into treatment. That is why I would get a cardiologist that is knowledgeable about Herceptin and Have a Mugga, done... My Dr also has now done a stress test. Do this before you start the Herceptin to get a baseline. I was in a group of Herceptin girls. In the past 5 years 3 out of the 6 of us had heart failure 2-3 years out... I come from a very heart healthy family and have relatives living to 100+ so last year 4 years out, when I started complaining of pain over my left shoulder and to my shoulder blade, down to my L under my arm, and underneath my sternum, swelling in my abdomen, and shortness of breath. And I was unable to lie flat at night... Everyone just said oh you are ok , you have indigestion or some intestinal bug. I kept complaining but my Dr's just did not hear me...finally they had me walk with an o2 monitor all over and I my sats would go up and down, 73% 89% 92% Up and down, which they could not understand? Nothing would show heart failure. (My PCP ordered a stress test but they could not get me in for a month...)I never had swelling of the ankles, which is another sign they look for and my lungs were clear!! Finally I was sitting up over a table at night to breath, and when I walked into my next chemo the next Friday... I sounded like I had run a mile, I was literally hoarse from mouth breathing!
But I had just walked slowly into the clinic.... Next day I had that test ordered...When I arrived for the test, I knew... and told them if they went ahead and did the stress test I would die! I only wanted and ejection fraction done. Finally someone listened to me...A Nurse.. My ejection fraction had gone from 75% to 23% .....than everyone panicked... So I learned you know your body! Fight with all your might till someone listens... Then get a good Dr who you put all your trust in. My cardiologist was fantastic. Treated me aggressively, and in three months I was up to 53%... She wanted me back on my Herceptin. So I would be safe! So find a Dr who is in the know. And watch your Heart. We do a scan every three months. Now. And if I have a problem she gets me right in. Hugs and good luck with your treatment... be a good advocate for YOU... Marily

[Julia]

Hello everyone. I have attached 2 articles published February 2006 by The New England Journal of Medicine. Also, for scientific data recommend search engine - http://www.pubmed.gov.

I am a MWFSurvivor and currently into my 7 month of Herceptin administered every 3 weeks for 1 year. Boy am I counting down the months to another celebration of finishing this milestone and removing my port-a-cath!

Have to say Herceptin is a breeze compared to the FEC/Taxotere/Xeloda then 8 weeks of radiation. Needless to say though during/after each treatment I do have flu symptoms for 3-4 days then between the 5-7 day I bounce back and feel good. My MUGA scans are done every 3 months and this is a MUST for anyone receiving Herceptin. My last baseline was at 51%.

Medical History: Found lump on right breast over 1.7cm week before Thanksgiving 2004, diagnosed December 2004 (tumor now 3cm), started chemo January 4, 2005 and finished in June, ER +, PR+, HER2/NER(FISH) + score 3.9, Bloom-Richardson 9/9, IDC & DCIS w/ lymphovascular invasion and Mitotic rate 3. No family history. End-of-June had lumpectomy w/sentinel node biopsy found positive node. Went for second surgery full axillary dissection with clear margins, no positive nodes w/matted nodes. Still managing lympdema which has caused migraines.

[SusanB]

Marily, what did your cardiologist do to treat you? My ejection fraction is 38%, and my oncologist said I can never take Herceptin again. He also said the damage is rarely reversible, but I've heard the opposite from several people. I am having a biopsy today for a possible recurrence, and I'd really like to get to where I could take Herceptin again if possible.

[Marily]

Hi I went to a cardologist first, My Onc said she was not trained for the heart. We did a mugga and not a stress test till later.... my heart was too bad. I was put on:
Lasix 20mg
Digoxin .25
spironolactone 25mg,
Diovan 80mgm
coreg 25mgm gradually raised now on 100mgm daily
Magnesium at night
Potassium Cl 10meq
Furosemide 40mg
Also had Sleep apnea test and on 2 liters O2 at night
with cpap at 9.
I slept up in a chair for about 3 months,
I had lots of rest!!! Was unable to go to
any higher elevation
I am doing fine and my test are good. I was
back on Herceptin in 4 months time.
best advice see a cardiologist. there are many
of us back on it after CHF
Hugs and good luck
Marilyn

[Johnnag85]

I am 39 years old, diagnosed 1 year ago with Her2Positive 3, stage 3. I had a lumpectomy, the largest 1 cm, but also had 4 smaller lumps surrounding it. I had 6 positive lymphnodes out of 14 taken. No cancer in my family at all, 3 early births, breast fed all, one later birth _ I have a 2 yr old son, non-smoker, very healthy not over weight- very active person time.. I went through 4 cycles of AC-12 wks of Taxol every week, and started the Herceptin at that time, also. I had a muga scan before beginning it, my heart strength was at 76%. By 6 months, my heart muscle had gone down to 54%, 7 months, 46%, where I stopped use. I was also treated for 7 weeks of radiation. 3 weeks after stopping Herceptin, a cardiologist took an ultra-sound of my heart and it had gone back up to 52%.

It has been 2 months, and since then I am suffering from back aches, slurred speech, extreme fatigue, blurred vision, dizzy spells and shortness of breath, nerve damage in my hands- they are constantly asleep, and wake me up every morning in pain.

I have just had an ab and chest CT, Brain MRI and Bone scan, the CT showed a dozen noduleus on my lungs, but fortunately my doctors prediction that the cancer had spread to my brain and bones and I only had a few months to live was incorrect, and my tests were negative. Except for the lungs, which were too small to tell if they are cancerous or not. I have to wait for 2 more months to see if they get larger or not.

Anyone have any experience with life after Herceptin as I have? It is quite disappointing not being able to finish out my year on it.

I have flushed my body and become a vegetarian eating only organic foods, a slew of vitamins, and I am going to begin yoga. Trying to get my strength back. I have gained 15 lbs I cant seem to drop since chemo. Plus I have chemo brain big time.

Thats it though...I think.

Life has become more precious, colors more beautiful, songs more meaningful and me less self-conscious about myself and more thankful for my beautiful family, friends and everyday I get to wake up and take another breath.

Thanks for listening. Hang in there everyone.

[SusanB]

Sometimes what looks like nodules on a CT scan is nonexistant on a PET scan, or it can be identified as scarring from radiation. My doctor has always followed up suspicious CT scans with PET scans. I have considerable scarring to the upper lobe of my right lung from the 33 radiation treatments I received.

[Johnnag85]

I had a PET scan done after the CT and they said it was inconclusive, due to the size of the nodules. I would have to wait to see whether they got larger in 2 months. Hopefully you are right, and they wont be anything. It's always something.