Side Effect: Congestive Heart Failure

hi ma! that's so funny, my grandson called my mom ma..she's gone now, but i loved typing that..anywho; i've come down with pleurisy, of all things; there not sure which chemo drug did it; have 2 have chest xray,possibly a  scan, and who knows..what treatments..onco said dont worry, itll clear up; cardio says it migjht, it might also kill u; so here we go again.....ur right, i asked,no begged the surgeon 2 remove, cut off both of my breasts.that's a desperate act of a desperate women. then, i almost died from immediate side effects from neulasta, now this! we fight so hard 2 live, and come up with more and more.i've come upp clean 4 the bc; but have so much other stuff now. hard 2 stay positive sometimes..i have fluid in one lung,that's what pleurisy is, and as i understand it, congestive heart failure is fluid 'round the heart.b.c....the gift that keeps on giving. will be praying 4 u. hope tests shows it's not congestive heart failure.if it is, i know strict diet, no salt is imp. but it can be dealt with... light and love, 3jaysmom

pixma - Although I am not yet considered to have congestive heart failure I did have to stop herceptin due either herceptin or adriamycin or the combination. I was supposed to get herceptin until July of this year but it had to be stopped in January as my ejection fraction went down to 25% which is around half of what it is supposed to be. By doing things like reducing my salt by a huge amount, walking on my treadmill 40 minutes about 5 days a week, and taking 2 heart meds, just 3 months later my ejection fraction is up to 35%. Will be having another echo in 3 months and talk to cardio doc and onc after results of that. Yes, I have read/heard that your heart can still be affected years after you are done with your treatments. See your doctor and ask to have an echo to see if that is causing your shortness of breath.

I had a MUGA scan prior to treatment. My score was 41. I was concerned about such a low score going into Tx with Adriamycin. Onc sent me to a cardiologist who did an echo. She said my heart was fine and gave the OK to proceed. I had ACx4, followed by CMFx4. Sometimes during the course of the two months on AC, I would feel pressure in my chest area, but onc said it was probably just from my sternum in reaction to Neulasta shot.

I had a follow-up visit with the cardiologist yesterday. She did another echo and said my heart actually looked healthier than before. Not sure how comparable the echo is to a MUGA scan. Damage from the Adriamycin was always a concern for me. Cardiologist said that in most cases if there is damage it shows up during treatment, it's not as likely to show up later although it can. Pixma, with Herceptin treatment on top of the Adrimycin, I can see why you would be concerned. I hope you get to the root of the problem soon. 

Hi Pixma,  I am one of those where the heart damage from adriamycin took 6 years to show up.  You are right, we are so concerned about surviving and getting over the short term affects that we tend to forget about possible long term side effects.   My symptoms came on very quickly in a matter of 4 weeks.  I couldn't catch my breath and it kept getting worse and worse.  I saw 6 different doctors in those 4 weeks because I knew something wasn't right.  The last week, I couldn't walk 4 feet without stopping for 5-10 minutes to catch my breath.  The last time I went to the emergency room the doctor said had I not come in when I did, I would have came in on a stretcher and I don't think he meant alive.   My ejection fraction was down to 18%, my heart was beating erraticly and I was in congestive heart failure.  I was in the hospital 5 days and they did echos, xrays, stress test and finally a heart cath that showed the damage to my heart.  It took about 18-24 months and 6 pills a days but my ejection fraction finally got back to near normal.  I will be on the meds for the rest of my life and have added cardiologist to the list of doctors I see!  But I'm lucky because when the cardiologist first walked into my room he told me I may require a heart transplant!!!!  For some reason that was scarier to me than learning I had aggressive bc. 

 All the doctors told me that I never looked like I could have heart damager/congestive heart failure.  I didn't smoke or drink, my blood pressure and cholesterol were perfect, and I wasn't overweight.  So it always frightens me when people talk about being short of breath because that was my only symptom.

 Good Luck!  Debbie

I had chemo about 8.5 years ago and only had 4 doses of AC.  The Adriamycin was very low dose according to onc.  Back then herceptin was only given at Stage 4 and Adriamycin was the chemo of choice for HER+ gals.  Herceptin is also toxic to the heart but from everything that I have heard the damage can be reversed.  Don't think that is the case with Adriamycin because the cardiologist said I would be on heart meds the rest of my life.   

I was 8 years out from my dx of bc and I had felt fantastic up until a month before I ended up in the hospital.  I honestly thought the cancer had come back in my lungs.  I had never in my life had shortness of breath and it started gradually and by the 4th week I couldn't walk 4 feet.

I just wish I had know about the long term effects of chemo.  I knew chemo could cause heart damage.  I just didn't have any idea what the symptoms were!   Otherwise, I would have been telling those 6 doctors I saw in 4 weeks, I had adriamyin - check my heart- and maybe I would have been dx'd sooner.

Cheryl, 

They did the heart cath to see where the damage was in my heart and also to check to see if I had any blockages which I didn't.  I did not have any swelling until I was sitting in the ER that last day.  My ankles started swelling but that was the only time I had any swelling.  That got the ER's doctors attention.  They immediately did a BNP blood test which was 900 and normal is < 100.  It checks for some enzyme that is released if your heart is in stress.  Then they did an echo that showed fluid on my heart and my LEF was 18%.  They put me on nitro and lasex and proceeded to remove 10 lbs of fluid.  They did a stress test on 4th day and the heart cath on the 5th day.</p>

This all took place over a 4 week period.  The shortness of breath started the first week when I walked up stairs or walked to the end of the driveway which is a normal length.  I would have to stop for 4-5 minutes. By the start of the 2nd week I would have to stop for 5-10 minutes and I found myself avoiding doing things. By the first of the 3rd week, I was waking up at 2 a.m. every night gasping for breath (which is a symptom).  After a couple of days of that and not sleeping but 3-4 hours a night I was getting really exhausted.  The last week I couldn't walk 4 feet without stopping.  So I literally did not do anything except sit on a couch. I was fine and my breathing was fine as long as I was standing up or sitting up straight.  It was to the point I was afraid to do anything.  I was going to the doctor about every 4 days throughout this and repeatedly told them I couldn't breath and that something was wrong.  4 different doctors said it was just a bad case of bronchitis!  1 doctor thought I had developed adult onset asthma.  Then 1 doctor made me an appt with a pulmonary doctor that I couldn't get in to see him for 3 weeks!  I had 2 chest xrays during that time that were normal.  My blood pressure was always normal. When the ER doctor told me I had congestive heart failure, I was just absolutely relieved.  Only a small percentage of bc patients who get adriamycin actually develop heart problems. 

I hope all goes well with your echo!!!  Hopefully they can determine if there is a problem with your heart.

 Debbie

To my HER2+ sisters,  I had to stop Herceptin in January after 3 months of tx (12 weekly) when my taxol tx ended.  I made two trips to ER in the fall due to chronic SOB (that seemed to get worse whenever I went in for an appt and the nurses would ship me to ER).  I went for a complete pulmonary function test. The doc said that I have a mild case of adult onset asthma.  I took Alvesco for 3 months and no more episodes.  In late Dec., my ECHO showed an EF of 25%.  Could it have been the Herceptin all along and not asthma, hmmmm???? I really think so.  The Herceptin was discontinued the next week.  I recently had two ECHOs and EF is up to 55% but cardiologist wants it better before he will sign off on resuming Herceptin.  That's just fine with me.  The Adriamycin also weakened my heart but not as much as the Herceptin.  DX is Cardiomyopathy.  I'm taking two blood pressure meds to help keep things in control.   

Blondie, do you think you will resume Herceptin at some point? It seems that our timetable is pretty close.  Since these side effects started early for us I can't help but wonder what 'could' happen even a year from now. I'm working hard to stay in the present though.     

Wanda   

it's unfortunate that we have this to worry about too, but yes - the se's of AC can come up years after. I have a similar story to yours that ended with me being put on medication 2x day. The good news is, it works and over the past 5 months I've improved a great deal. As long as I take those pills, I'm "fine". Best wishes for the same for you. 

Do you really think we don't regard the possible side effects of treatment?  I think it's natural to question if we should have done it when the side effects start.  But the alternative is just as risky, especially with HER2+ being so aggressive.  After my initial chemo and Herception treatments ended, my cancer returned in less than 2 months.  Even though statistically the Herceptin decreases the chance of recurrence 50%, it didn't for me.  Mine wants to stay active as soon as I discontinue treatment.  

Without Herceptin I'd be dead long ago.  My 5 year survival is this week.  I've had 5 metasteses, but all have been able to be treated with drugs, surgery or radiation and I'm currently in remission.  I deal with one side effect at a time, even though I do get mad about it because it just doesn't seem fair to have to deal with that along with cancer.  

Now I'm on Tykerb and Herceptin.  The Tykerb has the same risks, but I've had two brain tumors and the Tykerb blocks the Her2 in the brain.  I'll take my chances.

 Hang in there!!  It is a tough, tough road for sure.  But we're tough women, aren't we!!  That which doesn't kill us makes us stronger.   

Hi,

I am wondering if I should have had a end of TX. Muga Scan since I had A/C x4 12x Taxol TX. and once a week for yr. Herceptin TX. I went from my first Muga at 78% than dropped to 58% for 2nd than dropped to 48%. Stopped Herceptin for 4 weeks than rechecked was up to 50%/51% for the duration. They hav never checked it sense. Is this the norm where I had such a drop.

Feeling okay but tire easy, and have not have alot of energy, since TX.

What do you all think?

Thanks, Bridget

Bridget - if it were me even with no symptoms yes I would go get a final echo. When they told me mine was at 25% I about fell off the table as I had no symptoms until a few weeks after they told me. Then I tried to resume walking on my treadmill after 10 months and figured I just couldn't go more than 15 minutes because of not doing it for 10 months, but really it obviously was my heart.

Hello all breast cancer survivors:

It is sad that you have endured all these difficulties to get rid of cancer and the desire to survive and extend life. My wife was diagnosed with breast cancer when she was 36 yo and underwent modified left breast mastectomy with 3 out of 8 lymp nodes positive and removed; underwent chemo for six cycles.  That was in 1996.  Last year 2011, she experienced chronic headache and pain located in her spinal area.  It was misdiagnosed by multiple practioners even after a CT, X-ray, and MRI showed a growth in her gluteal area wrapping the pelvic bones.  A fine needle biopsy was inconclusive; a core tissue biopsy of the same growth showed a carcinoma.  The breast cancer has recurred.  The chronic headache was confirmed from nuclear body scan to be metastatic bone cancer all over the body causing the chronic headache on the right temporal skull.

She started chemo using Adriamycin and Taxol in November 2011.  It was delayed when she accumulated fluid in her heart.  Pericardial window was done and a drain was created to reroute the pericardial effusion towards the lung.  She completed her breast chemo last March 2011.  She was doing pretty well during the chemo administration.  However, just lately, she started developing shortness of breath.  She has chronic asthma; an exacerbation occurred right after the chemo and was treated.  It was followed by a pneumonia infection. These were done in ER situation.  The shortness of breath started after her ER admission.  It was thought to have been caused by blood clot in the lungs which may develop into pulmonary embolism and edema - a life threatening condition too.  It was ruled out.  Her shortness of breath continues.  The EKG was normal but the ultrasound (echocardiogram) showed a dimished ejection fraction of 25%.  Pre chemo showed a 50% EF.  Obviously, the chemo drug caused the cardiomyopathy.  The MDs do not admit it but reading literature after literature online, Adriamycin is cardiotoxic.  There is a protocol in administering A/T regimen even with patients that do not have heart abnormality pre chemo treatment.  Now my wife is developing this congestive heart condition.  She is taking Coreg (carvedilol) and lasix to remove the fluid from her lungs.  She's on strict no salt diet and limited fluid intake.  ER MDs and the cardiologist seem not concerned about it.  But my wife is struggling everyday after the conclusion of the chemo; crying and crying because she can't breath and has difficulty even doing a simple daily activity like taking a shower or eating or even walking a few steps.  She's 54 now and on disability for 6 months.  She will not be able to come back to work.  Her condition is permanent. I am worried about the CHF and she has not grasped the outcome yet.  She is still hoping to have a quality life post chemo but it seems it is not possible with the side effect of the chemo drugs.  

To all who have developed adverse side effects post chemo like my wife, what was your prognosis.  Has anyone who developed the CHF improved through the years?  I read from literature that Vitamen E and diet modification help CHF.  There is not a chance the myocardium cells to get better once damaged by cardiotoxic drugs like Adriamycin. With the EF of 25% from 50%, the damage is irreversible and this will develop a chronic CHF.  Everyday, my wife struggles.  Some minutes her breathing improve but most of the time it is a struggle.

Is there someone out there who have survived this condition for more than a year.  Please share your thoughts. I don't have anymore trust with MDs.  The oncologist who treated her, thought her condition as classic fluid effusion that can be removed by centesis.  Lasix med is, I think, sufficient.  Fluid effusion is associated with edema.  She is asymptomatic of these.  Her blood pressure is consistently low, below 100 (systolic) which is difficult to administer Coreg and ACE inhibitors.  These blood medications lower the blood pressure.  Coreg is vasodilator which can be tolerated even if her systolic drops below 100 but not below 80.  ACE inhibitors like lisinopril can not be taken since she has very low blood pressure unless her BP goes above 110 systolic.  I am trying to gather information on post chemo cardiomyopathy condition and its management.

Any comments, thoughts, suggestions, etc. is appreciated.  Prayers to all who suffers. Desperate means and desperate needs require desperate answer.  God Bless Us always.

Hi Eve

I have been following your progress on Herceptin with interest and can relate to your symptoms. I have a history of heart palps before and during BC (just finished year of Herceptin) 4 days ago I had yet another episode of heart palps and shortness of breath with increase in fatigue. I went to my clinic and they did an ECG trace which was normal. Ive had loads of these, including a 24 hr test and they were all normal, yet periodically I have there symptoms. The clinic have now discharged me so if it happens again I shall have to go to Accident & Emergency and wait 4 hours!

Not sure where to go from here. Clinic suggested I go to my G.P and ask for a referral to a cardiologist. This will mean more tests. Looking back I can remember first ging to the doc with heart palps in my late teens. I am now nearly 42. So frustrating because something is causing this. Ive cut down on caffenine and only have 2 units of alcohol max in one day and stick to 3 times a week. (I enjoy a glass of wine) However, as a student i drank far more so dont think its all down to alchohol?

My EF dropped to 47 after 3 months of TCH. My last echo was 59. Personally, I dont think Herceptin has compromised my heart function. At times I feel it has been anxiety and that there is an underlying heart rhythm abnormality. The docs put me on Ramipril 2.5mg and wanted me to remain on it until July 2012 when i have my final echo. I have decided to come off it because it may be causing these symptoms and where possible I want to be drug free.

Any advice/comments would be appreciated!

Liz (jackboo)

Jackie and Laurie, I was annoyed when I was first told after 2nd infusion that the palpitations I had are normal PVC's. I had had a echo's before the fusions and was told my heart was fine. I never have been told that I had PVC's before herceptin. I hate being told this is all normal when it's not. My erratic heart beat has calmed down a bit since I begun weekly and slower infusions, but the erratic heart beats are still there. I'm the one who is demanding wkly and slower infusions. Fortunately, my oncologist is also proactive and is doing everything possible to make sure my heart isn't in danger, and if possible to continue the Herceptin treatments. She is the one who thought I should see and be under the care of a cardio specialist.

It does concern me that a lower heart function could impair my life. I'm hoping as I'm sure you are too that after being off Herceptin, my heart function will return to normal. Laurie, gee, I hate the idea that the lack of blood flow could effect our mind. Scary.

I'm seeing my new cardio doctor on Friday. I heard he's one of the best. I heard that if he perceives any abnormally, he will do all test needed to find out what and why. I'm looking forward to the appt. I know my fatigue is due to my heart rather than Herceptin meds. The meds maybe the culpret, but the heart not fuction normally of course makes us tired. I hate fatigue.

For all those suffering from heart problems from herceptin, please- report it to everyone you can, so it gets into the stats doctors have. We keep hearing only 2% of people taking herceptin have heart problems from our oncs, and I don't think that's right.

Also, I think there's a class action lawsuit for people with permanent heart problems from herceptin. 

Thank You for speaking up and helping others. 

Peace, strength and healing to all.

XO