Heart Damage from Adriamycin and Radiation

DebbieB

I was dx'd with idc in October 2001. My tumor was 2.4 cm, Stage 2, Grade 3, ER-/PR- and highly HER+++. At that time Herceptin was only offered for stage 4 bc. Adriamycin and Cytoxin was considered the best chemo cocktail for HER+++ bc. Wanting to do everything I could to reduce my risk of recurrence, I went thru AC and did radiation.

I was pretty active on this board for several years but haven't posted much in the past couple of years except when I was following Stacey/Sunshine who I still cannot believe is gone.

I just wanted to bring some awareness to other women who may have gone thru Adriamycin in the treatment of their bc and who also had radiation on the left side. I am 51 years old (5'5" and 150 lbs) and have never had high blood pressure / high cholesterol or any heart related problems. For the past 4 weeks I had been battling what I thought was bronchitis. The only difference in this bronchitis and other bronchitis that I have had is I experienced shortness of breath. After about a week, I was waking up at 2:30 in the morning unable to breath. By the 4th week, I was unable to walk more than 5-10 steps without being give out and having to stop to catch my breath. I went to the doctor 5 times in 4 weeks and was on 3 different rounds of antibiotics. I honestly was beginning to believe that the cancer had come back in my lungs. Last Friday night, I was slightly nauseated on top of the shortness of breath so I went to the ER. When I made it back to an exam room, I realized my ankles were swollen really bad. This was the first time I had any problem with swelling. The doctor immediately came in and said I was dealing with heart problems and not lung problems and I was admitted.

Come to find out I was dx'd with congestive heart failure. I had fluid on the side and bottom of my heart. After an eltrocardiogram, stress test and heart catherization, it was determined that my heart is functioning about half of what it is supposed to be and the damage was apparently due to the adriamycin and radiation from 5 years ago. Right now I am on a lot of different meds to strengthen my heart. About 50% respond favorably with the meds while 25% have to have heart transplants.

I don't want to scare anyone. I just want to bring awareness to possible heart damage from Adriamycin and radiation (when on left side). I just feel so damn fortunate that I ended up in the hospital and was dx'd before it was too late. All the doctors kept blowing me off and told me the bronchitis was just lingering and I needed to give it time. But I knew something was not right and kept going to doctors and kept pushing. I cringe to think what would have happened had my ankles not have been swollen because that was the one thing that seem to get their attention. I am just thankful I was finally dx'd.

I know a lot of people think doctors are infallible. And the doctors have since told me they missed it because there was nothing about me that suggested congested heart failure!

Again, I'm just wanting to bring awareness to the possibly of heart damage from Adriamycin.

Debbie

Anonymous

Well, thanks for sharing. I know that my doctors were very clear in their advising me regarding the potential cardiac damage from Adriamycin.

I hope that now that you know what your real problem is, you get the best care and see some great results.

Marin

Anonymous

Debbie, I'm so sorry to hear that you are having to deal with this. Bless your heart.

Yes, I also know the Adriamycin can cause heart failure. I think many people become complacent after years of no problems. Thank God you were diligent until you got to the bottom of your problem.

Like Marin, I hope you see some great results from the meds you are taking.
Shirley

lam

Debbie what a scare. I hope that your heart responds well to the meds and that you feel stronger very soon. I am a year out of chemo and find it hard to take deep breaths. I want to ask my onc. at my next visit what heart check ups would be appropriate for detecting any potential heart issues. I am 50 years old with no other medical problems other than the BC so I am worried about the breathing issue.

Hugs,

DebbieB

Thanks for the well wishes. I am hopeful the meds will work. Unfortunately I think I may be on them for the rest of my life!

I've got a sister that is going ape-shit wanting me to sue my oncologist but I keep trying to tell her that I knew about the risks of adriamycin. I had to weigh it against the benefits and at that time it offered me the best chance on not having a recurrence considering I was highly HER+++.

I guess I just assumed the damage would have occurred sooner after the chemo though I don't know why I thought that! I'm not even sure I knew what "damage" may occur or what the symptoms may be so I could look for them. But here it is over 5 years later and I'm dealing with congestive heart failure and everyone is just as shocked as I am!

Indigoblue

It was explained to me that the oncologist is not responsible for any heart tests beyond the Muga, and should a condition arise, you are supposed to seek further dx through your family physician. I found that out "after" taking A/C, 12 Taxol, 32 Rads...

Whatever; didn't have many choices, so it's all pretty much a shot in the dark.

Thanks for the info. I always figured I'd get heart or cancer; yahooey, now I can have both! Just kidding...lol.


Indi

azdarleen

Hi Debbie so sorry to hear about your heart problems, I can honest say I know how you feel, when I was reading your post I almost though I was reading about myself. I’m 53 and never had any problems before, very active.
I was x.d with breast cancer Dec 2004, tumor was 2.6cm stage 2, ER -neg, 13 lymph nodes removed, 1 with a trace of cancer, did 4 rounds A/C (adriamycim and Cytoin) and 4 rounds Taxol, Developed Lymphdema in Jan 2006, then in Oct 2006 I also had problems with shortness of breath, went to Doc and was taken by ambulance to hospital and was attempted with Cardiomopathy, had echo done and my ejection friction was only 33%, was set home with Med, in Feb 2007 awoke up with chest pains and shortness of breath DH took me to ER and was attempted with congestive heart failure (I was swollen also) fluid around heart and lungs, With the med for the heart it has lowered my blood pressure too low, plus I have a Ventricular Tacycardia so the end of Feb I had to have an ICD (implantable cardioverter defibrillator ) put in. All of my heart problems have been from the chemo ( Adriamycin)
It is all very upsetting, It has slowed my down a lot, but all you can do is take one day as in comes and live it to the fullness. I’m on a low sodium diet (1500MG) a day that’s not much let me tell ya.
This is something that needs to make people aware of, I was like you never though I would have heart problems.
Darleen

azdarleen

I forgot to say my cancer was on the right side and I didn't have any radiation
Darleen

Indigoblue

Darleen,
I would like to know more about your symptoms. I've been having fainting spells, dizziness, headaches and hypertension. All of it began about 3 weeks ago, and the docs have not seemed concerned. My last Rad treatment was Oct. 30, 06.
My family doc was/is concerned about the hypertension (which started with the Dexamethazone x 4 (steroids) due to allergic reactions to the Taxol x 12 last summer, 06.

Recently, I was given a script to bring down the high b.p., but the side effects are scarey.
No one mentioned Adriamycin, Taxol or Radiation effects as a likely factor in causing this condition. How did you find out the cause? Did you see a cardiologist to begin with? What tests did they perform?

My surgery was on the left side; Husband has been horrible and I've been stressed out, so at first I thought it was all because my house was falling apart and it was exhausting trying to fix everything.

Fatigue has been extreme. Normally, I am/was very active.
Did you have headaches?

Thanks for the info. Really don't want heart stuff, but when I fainted this week, I actually blacked out, hit my head, and have been worried it might be Adtriamycin/Cytoxin/Taxol/Rads induced...

If you could p.m. me with any information about it, that would be great! Husband needs computer now, so it's hard to keep up with the great stuff on this site.

:crazy

((hugs))

Indi

DebbieB

Hi Darlene,

I wondered if there were others out there like me. It sounds like you have been thru the ringer as well! Being told I had bc was tough but it doesn't compare to be being told I had congestive heart failure at 51. Right now I'm just waiting to see if the meds are going to work. If they don't, I have been told I will be referred to Emory University for a heart transplant!

The only symptom that I experienced was shortness of breath which became so bad that around 2 a.m. would wake me up. The only way I could breath was if I sat straight up. The swelling did not occur for me until the day I entered the hospital.

Once they determined I was having heart problems in the ER, they called in a cardiologist who performed an electrocardiogram, stress test and heart catherization. There is also a new blood test called BNP which gives a good indication of problems.

I'm beginning to think they need to add one of those colored labels to all my medical charts that indicates Adriamycin so doctors won't miss it!!!

Darlene, I hope you get your health problems straighted out. We are much too young to have gone thru bc and heart problems!

Debbie

tawyna1

hi,
mom had bc 3 yrs ago. stage 2 cancer in 5 nodes. they told us the risk of heart diease. she took ac and then taxol then 30 rads. she had aortic valve replacement surgury 12 yrs ago. she is on a blood thinner so it scared us that she could get more heart damage .
her mast was on her left side. she coughs alot and gets short of breath. she has a heart doc. we go in a couple weeks. it is sooo stressful.

Doc

Debbie, there is good chance that the meds to strengthen your heart's effectiveness will help your symptoms, and fairly promptly, and the doctors may also use some diuretics to get some extra fluid out of your system.
A good cardiologist is who should be managing this issue for you, keeping your oncologist informed of course.

I don't think doctors are infallible (and I know, because I am one ....) but it is hard for me to hear people encouraging you to sue your oncologist. As you said, the risks of Adriamycin are considerable and well known.

I do think that whoever treated you for 5 weeks for "bronchitis" was just treating you for the most common thing, and he/she really should have stopped to think, when you weren't improving, that it was time to consider another diagnosis. I don't know who told you "nothing suggested congestive heart failure", but your progression of symptoms, a cough with no fever, increasing shortness of breath and especially needing to sleep sitting up are CLASSIC signs of congestive heart failure. Not that you should have known that, but that your doctor should have. A chest x-ray done after the first round of antibiotics failed would have diagnosed you much earlier and spared you the scary symptoms you had.
Sounds like the ER doctor was more on the ball.
I hope you continue to do well and I hope I am not being too pushy to say I hope you find a new primary care doctor, you deserve better.

Thanks for telling your story. I think it is important for our doctors not to just warn us of the side effects of our chemo, but maybe to go over with us what kind of symptoms we might see if a problem developed.

DebbieB

Doc,

Right now I am on 7-8 meds and 2 of them are diuretics. I see the cardiologist in a week and am now wondering how soon they can expect to see improvement in my heart function. He has said that the normal range was 55-60 and mine was 25.

I actually really like my primary care physician. I went to doctors/ER 5 times in a 4 week period before the final ER visit where I was admitted. On the 3rd visit, my family doctor did a chest xray and referred me to a pulmonary specialists who I could not get in to see for 3 weeks (which is probably good)! Several days after that I went to the ER and they did a chest xray which the ER doc said was clear. He actually said bronchitis was bad this year and shortness of breath may linger for weeks! He said I needed to sleep and wrote me a prescript for Lortabs! 3 Days prior to actually being admitted to the hospital I went back to my family doctor and I actually have a bruise on my ankle where he checked to see if there was swelling and there wasn’t. Also, I’m not overweight, my blood pressure is fantastic, my cholesterol (good and bad) is excellent and as long as I was sitting in a chair, my breathing was fine and there was no shortness in breath! I had more doctors and nurses at the hospital tell me that there was nothing about me that looked like congestive heart failure. The only time I actually broke down and lost it was after they wheeled me to my room on the Progressive Care Unit. The unit was packed and I was the only person under the age of 70!

I think one of the problems is that when we are dx’d with bc and go thru chemo, we tend to focus on the most immediate side effects (loss of hair and nausea) and all of those are just temporary. I think we need more awareness on the other possible long-term side effects. I knew Adriamycin could cause heart damage but honestly had no idea what symptoms I needed to be looking for.

I also have a lot of respect for doctors. I can honestly say they have saved my life on 4 different occasions now. I wouldn’t even consider for a second suing my oncologist. I knew the risks but being highly HER+++ I also knew adriamycin was my best bet. Had I chose not to have it, I’m not sure that I would be here today. My sister is one of those people who needs to find reason or blame. She is also one of those people who will change doctors until she finds one that tells her what she wants to hear!!! I look at it more like the cards I was dealt and instead of why me, why not me. There are just some things that are beyond our control and bc was a perfect example. There is just no rhyme or reason at times!

I don’t want to frighten anyone and I definitely do not want to stop anyone from choosing adriamycin if it is the best option. I honestly wouldn’t do anything differently knowing what I know today. I just want to bring awareness. Knowledge is power!

Debbie

wallan

I am so sorry to read about this. How distressing for you.

I had bc 3 years ago... stage 3A er+/pr+ her-. I had AC/taxol and radiation on right side. I have MUGA scans about every 6 months ordered from my oncologist.
My first MUGA about 6 months after my chemo was done showed a lowered ejectin fraction... about 40%. My oncologist told me to watch out for your symptoms. I was scared, but nothing has happened. In fact my next MUGA scan showed my ejection fraction had improved to about 50%.
I go for another MUGA this July again. I am nervous now after reading your story.
I thought the risk to your heart from adrianmycin was low. I knew it could happen, but I thought it was unlikely. After reading your story and hearing of others (not as dramatic or scary as yours), I am thinking this heart damage is more common than I thought. This sucks!

Again, I am so sorry to hear your story. And thank-you, thank-you, thank-you for alerting us. I will pay more attention to any symptoms that I do get now.

God bless and I sure hope you are up and at em again soon.

HUGS
Wendy A

azdarleen

Indigoblue,
I sent you a PM , hope it helps.
I'm glad more people are becoming aware of the heart problems, I know myself I had forgot all about the possible of it, and it had been almost two years out for me, most of my symptoms I wasn't putting together, but looking back now all the signs were there.
Darleen

azdarleen

I agree with you Debbie, if I had it to do over and know what I know now I still would have had the chemo, at least I'm here,
Darleen

nosurrender

This was my big fear in starting chemo again. I had left side rads five years ago..
I so did not want to do Adriamycin. But then I looked at the 4+ nodes and talked to three docs and they all said the cancer needs to be killed and the risk for cardiac problems is low. I know it can still happen - and Debbie I am so sorry it happened to you.
I have two more Adria's to go- I hope my heart stays safe.

Thank you for posting this head's up. It is important info.

DebbieB

Wendy,

My onc did not do a muga scan after chemo which did concern the cardiologist. And I am still trying to figure out what the various tests/numbers mean but I'm thinking the ejection fraction is supposed to be in the 55% range so 50% should be good. Mine is 25%. Did you get referred to a cardiologist when yours was at 40%? Were you given heart meds?

And this sucks so bad. It's ironic to survive bc to have to deal with heart failure. I am just hopeful the meds will work. I go back to the cardiologist in about 10 days. I have lots and lots of questions now that I have had time to digest all this.

The scarey part is had I just waited to get over the lingering effects of bronchitis, I would probably be dead!

Debbie

jenjen68

Hi ya'll

What I don't understand is why they are still using Adriamycin? I keep reading that Eupirubicin is just as effective but less toxic on the heart. I hear that A/C is very common in the states? Iam about to start FEC which doesn't really make me feel any better.

Debbie, I' sorry about your health problems. It's just awful that while people are fighting bc their heart is being damaged. I hope that the meds are working for you!

Jen

Doc

Debbie, you have explained everything so kindly and I am glad you feel you can trust your primary doctor. I also want to encourage you about your prospects for improvement.

Hang in there! Doc

PuppyFive

Debbie, I too had Your symptoms!
after years of complaining they gave me another stress test, the walking one! I had the one they give you meds. to take and they check your heart a year before! no problems seen! on the one i took last year, they said i did not pass. so i also had a cath. and the dr. said that I had a Viral Infection in my Heart since early adulthood!
I have been put on meds. for that, also for High BP and HC both good and bad! they said this does not show up in any other test! so I guess in order to find a Virus in Your heart you have to be almost dead! I too have dammage to the left bottom corner of my heart and a lot of scar tissue throughout and conjestive heart failure!(ONLY CURE TRANSPLANT)
from the looks of things my dr. seems to think i have a lot to worry about with my right breast, I find out MON.
My question is what happens if I need chemo. and rads.
do they give them to me??? I AM SO SCARED! would appreciate any help!!! Puppy

DebbieB

Puppyfive,

I am so sorry that you are going thru this and I know you are scared! They keep throwing out transplant as an option for me but from what the cardiologist says 50% of folks respond well with just meds. So hopefully both of us will be in that 50%!

Have you found a second primary in your right breast? Rads in your right breast shouldn't be a problem. Hopefully you will have caught it early enough that chemo will not be necessary!

Your are in my thoughts and prayers!

Debbie

PuppyFive

Thank You Debbie, I was so afraid I was the only person in the world with this problem! although our report may not
be the same seems the treatment is! God knows I am so sorry you have this in your life, but posting it has given me strength and hope, by your wonderful response! Thank You So Much! xoxo Puppy

trk_koa

Jen,
I think the reason epirubicin isn't used as often is that it costs about ten times more per dose. My insurance would pay for it, so I had EC instead of AC. I have a family history of heart problems. I'm not sure if my onc had to go to bat with the insurance or not. This was December of 2005.

I think as of fall of 2006 there is a generic for epirubicin. Hopefully this will change. The cost should not be the reason for choosing one over the other.

Nancy

Indigoblue

I read somewhere in the news that some doctors actually receive dividends/kickbacks/vacation packages, etc. for prescribing certain drugs and for using less expensive drugs and procedures for chronic illnesses via insurance companies and pharmaceutical companies. Even if you have perfect insurance, there are strange things going on in the world of business/medicine/insurance, etc.

My pet peeve: Why is it that doctors charge less for the insured because of the deal they have with insurance companies and then charge top fees to the poor and uninsured. That seems deranged, dishonest, and heartless. What does that say about our greedy society and who gets the best care. Who decides on who receives a more expensive treatment, surgery, MRI, chemo drug, Pet Scan, or life saving measure?

There's something dishonest about the whole system, whether you have the best insurance, pay out the nose insurance or none (and end up getting the best treatment by chance in a clinical trial)?

It was on CNN or in the paper, but I find this type of medical bribery superficial and damaging to the entire medical profession. Recently, many hospitals are going to great lengths to buy-out other hospitals, build new ones, and stay in business for those with higher incomes. Meanwhile, the poor people who need medicaal care get no care, or the worst possible if they can find a hospital or doctor who will admit them. Often they are poor because they became ill in the first place. Something needs to be changed with this nation's healthcare policies. Shame on us!

Fuming....
Indi

Anonymous

This is a tough topic. I had the red devil and if I had to do it again, I would. Luckily I didnt get any heart damage from it - at least to date. Since I was on herceptin, my onc did a muga scan after 12 doses. My heart EJ went to 48. We stopped the herceptin and it went back up to 67%.

Lets face it, Chemo is poison, It kills the good cells along with the bad cells. Taxol and Cytoxin are no better. But what choices do we have. Right now, chemo is the only treatment available.

Congestive Heart Failure: Initial symptoms include shortness of breath with exertion, unable to lay flat while in bed from SOB, and ankle swelling.

Im lucky, I have been monitored by my PCP along with my onc. They worked together to address and medical problems I developed.

Indi: Its illegal for doctors to get kickbacks, vacations,and dividends etc from the pharmaceutical companies. Its called the Safe Harbour law.

I have issues with insurance companies, similiar to yours. I pay $750.00/month for a PPO and I still have to pay out of pocket. I just got a notice that I owe my onc money after a visit. It wasnt enough - my $40.00 copay. He charged $123.00 for 10 minutes of his time. I always thought when you have a PPO they were supposed to accept the copays as payment. Half the medications Im on, my insurance doesnt cover - so sometimes I wonder why I even have insurance.

Anyways what is really sad, is that insurance companies are making record profits. Just like the oil companies. And its totally out of our control. I also saw a special on CNN and they said the new motto for insurance companies is DENY AND DELAY. They are hoping we will get so tired of trying to get our medical expenses covered, that we will give up on it.

It also bothers me that insurance companies are now telling our doctors how to practice medicine.

I know this is gonna sound weird, but since being diagnosed with BC, I dont feel like the doctors are really listening to what we are saying. We have so many different side effects to treatment and most times they seem to blame these side effects on depression.

Well thats my rant, and Im fuming about this too. I see my hospital building and building. Adding more and more wings and I think - right out of the pockets of those who are sick, weak, and frail. This is Big Business!!

Nicki

DebbieB

You are correct…chemo is nothing more than poison but for some of us what other options do we have. In 2001 when I started chemo, I’m not sure epirubicin was available and herceptin was only available for stage 4. Cost would not have been a concern because I had excellent insurance.

You don’t want to get me started on health care in the US. It blows my mind that we can spend trillions of dollars to blow up Iraq and we cannot guarantee health care to every individual in this country. We are just this side of a major health care crisis. You have all the baby-boomers who are starting to have serious health problems. Most major corporations are changing their employee insurance programs so that when you reach the age where you can go on Medicare, your ability to participate in the company medical insurance program ceases! My mother only had Medicare/Medicaid and hospitals will send you home in a heartbeat whether you are ready and able! Plus the number of doctors that do not accept Medicare/Medicaid is growing by leaps and bounds. I have been writing Congress about this for years! If our Congress had the same medical insurance as the rest of the country, something would get changed!

Nicki, thanks for posting the symptoms of congestive heart failure. It’s probably something that needs to be posted on a regular basis. Anyone that goes thru chemo and rads should know this. I can remember being told that adriamycin could cause heart damage but I don’t know that I was every told what the symptoms were!

Debbie

ravdeb

And, besides the Muga, is there any way that my family doctor would know through the stethescope if I'm on the verge of heart failure?

SOB...is the definition only with severe feeling of not getting enough air or could it have a slight feeling of not being able to take normal, deep breaths?

gsg

I'm stunned to learn this didn't show up until so many years later. I too was on A/C...the third dose collapsed my lungs. I made it through that and the rest of the chemo and figured I was out of the woods now as far as damage to the heart, etc.

So sorry you are going through this. I really appreciate the heads up. Good luck to you, Debbie.

Doc

I know this thread is veering off the initial topic, but I want to respond to Indi's peeves about insurance and doctors.

I agree with most of your points but will respond to your rant with a counter-rant

You will probably not believe me, but doctors do not get kickbacks or prizes for prescribing certain drugs. Doctors are often given free samples of the newest medicines by the drug representatives, and this may encourage us to use the new drugs (and I'm talking things like antibiotics, antihistamines, etc., not chemo drugs). These free samples are no profit for us, and it is illegal to sell them or charge a patient for them, but we usually give them to insured or uninsured patients so they won't have to buy the prescriptions. I almost never gave free samples to Medicaid patients because Medicaid would fully pay for whatever I prescribed for them. I gave Medicaid patients the same care as insured patients, and the only difference might be that an insured patient's prescription coverage might be only for generics and the Medicaid patient could be prescribed almost anything.

About your other point on doctor fees, a doctor sets his fee across the board. It is the insurance companies who say back to the doctor, "well, that may be your fee, but if you want to treat patients with Black Cross Insurance, you will accept 60% of your fee as full payment." A doctor has to say he will take all Black Cross patients, or none. This is a horrible system and I agree with you that it serves nobody well and is dishonest on its face. What is even worse, some insurance companies will "sell" a group of covered patients to a second insurance company, which takes another cut off the doctor's fee, and neither the patient nor the doctor may be aware that this has happened until reduced payments start coming in.

Our medical system needs some legal overhaul,and it is long overdue. I was hopeful back in the Hillary Clinton as First Lady days that it would come to pass, but the resistance to change was just too strong. I see the insurance companies as the main bad player in this picture, and they are truly profiteering off the patients and doctors alike. Of course a Universal Health Care plan, which most major countries except the USA have, would spell the end of many health insurance companies so they strongly lobby for things to stay as they are. If we had a Universal Health Care system that was workable, most doctors could run their offices more economically, keeping fees down for patients, because all bills would be sent to a standard payor. The system as it is now keeps several clerks fully employed in each office calling insurance companies, asking for permission to treat the patient, protesting the many rejected claims, and the covered services are different for each insurance company so it is truly a challenge keeping up with it all.

Part of the big "game" insurance companies play with doctors is to hold off on paying us for weeks or months. The money sits in their bank account and earns interest for a little while longer, more profit for them. They may keep rejecting a claim until the doctor's office has resubmitted it 2 or 3 times. The persistent offices eventually get paid, those who give up too easily just don't get paid. All this is a colossal waste of time and takes away from the primary mission of caring for the patients. Laws have been enacted to address this fraudulent practice ("Prompt pay legislation") but many insurance companies scoff at them, force doctors to document their misdeeds, and eventually pay up along with a small fine to the government.

I don't know what trials you have been through personally with your insurance, but I agree it is a shame that we have to fight red tape and worry about bills at the same time we are fighting cancer.

SheriH

Nicki, I wanted to agree with your thought that all of our symptoms are attributed to depression. I just went through that with my pcp. It was very frustrating!