Heart Damage from Adriamycin and Radiation
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AT&T bought out Bell. My husband retired from Bell South. I'm really afraid that next year things are really going to change. Insurance through Bell South has been great. I copay has been low as well as the prescription plan.
As far as a national healthcare plan, I'm not so sure. Other people from other countries come here for treatment.
The reason our doctor gives us samples is to try them before buying a new prescription. It's a waste of money if the new med doesn't work. He writes a prescription that we can send in if the sample works.
Another thing. My internist no longer see patients in the hospital. The hospital internist would see us. I never asked my doctor why he gave that up. I'm thinking because he's at the age that he doesn't want to work as many hours.
It kind of scares me to think if I have to go into the hospital that he won't be there.
Shirley -
Doc---
Nice that you actually get the samples to the patients instead of it going home to the Doc's family when they can't get a comlimentary stock bottle.
Okay, it may be illegal but its not illegal to get an honorarium for his opinion of a medication or even an advertisement.
And I don't know many Docs even good ones that wouldn't give a big ear to a detailer in exchange for a meal for a Doc and spouse to the best restaurant in the city including parking.
The only thing that seems to be cutting back on this is the fact that it is not profitable for a detailer to give perks to an office whose patients are forced to use formulary
medications.
I am curious why Canada and the UK with socialized medicine
would be using Epirubicin if it was so much more costly than
Adriamycin? I thought socialized medicine was based on cost containment?
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Susie -
GSG,
My onc did not do muga scans and I dont know why. I know the cardiologist couldnt believe it. My daughter and I just had a big conversation about that. Had I had muga scans every year, I may have known much earlier that something was going on with my heart. Knowing what I know now, I would insist on regular muga scans!
RaveDeb,
The shortness of breath that I experienced occurred when I exerted myself. This started about 3 weeks prior to being admitted to the hospital. It was like being unable to catch my breath and I would have to stand or sit still for several minutes. Several days after the shortness of breath started, I began waking up like clockwork around 2:30 a.m. unable to catch my breath. That went on for about 2.5 weeks until I was admitted to the hospital. The shortness of breath on exertion got even worse. I walk faster than most anyway and I had to physically force myself to walk very slow. As long as I was sitting upright in a chair I was fine. I was unable to lie flat. I was coughing a lot as well. I did not have any problem with noticeable swelling until the evening that I went to the ER and my ankles seemed to swell up very quickly.
Doc,
I totally agree that insurance companies are the problem. The red tape for patients is bad enough. I can only imagine what it is from the doctors side. When I was going thru bc, about every 2nd claim would be declined because they needed additional info. I would call them and it was nothing more than validating my address and whether or not I had any other insurance! In other words - delay tactics to not pay which enabled them to sit on their money.
As a doctor, what do you think needs to be done to ensure everyone in the USA has healthcare? I know a number of countries have free health care but I have also heard that you can die waiting to get into see a doctor! So I'm thinking that a free health care program is not the answer either. But everyone should have access to insurance.
Debbie -
Debbie,
Are you saying that people should get MUGAs during and after and that can help prevent further damage?
Sorry to be a dope here. But your post really hit home with me. I had left side radiation five years ago. I am now re-diagnosed with right side cancer and am currently getting Adriamycin. I fought it because of the radiation but they told me I would die of my BC before I would of a heart problem if I didn't get it.
I have swelling and shortness of breath. I only had an echo before treatment, but the cardiologist had a hard time seeing the heart because I had a bilateral with tissue expanders.
Your post brought back my fears and made me realize that I had been right.
I hope you will be ok. I am so sorry this happened to you.
g -
Ladies,
How does this damage to the heart work? I had AC 2 years ago. How is it that the damage can occur so much later? Does the Muga tell how much of a problem there is and can we request that test yearly. Sorry I am so dense I just didn't realize the potential problem and want to be aware of how to proceed.
MJ -
I had a MUGA scare earlier this year. After MUGA came back low, went to cardiologist. He was pretty confident it was an error on the reading of the scan, BUT he said he has seen heart damage show up 10, even 20 years after adriamycin. How one can tell it is from the chemo, or just a case of heart disease- which is still the number one killer of women- I don't know. Thankfully- I checked out fine. But it is good to be aware of the symptoms of CHF. I am having heart tests because I am still on herceptin. I am thinking I wouldn't be having these tests if I was not also given herceptin.
Is there a protocol for heart tests (echo, MUGA) post chemo/herceptin? I will ask next time I go in. -
Debbie, What kind of scan did you have that first diagnosed
this? Did you have a Thallium Stress Test? Is this Muga
Scan the only way to tell.
I had A/C but refused the Muga. I had a cardiogram but I was absolutely panicked at the thought of any dye. My father died from a Cardiac Catheterization. The odds of dying were 1 in 10,000 at the time. The whole subject makes me crazed.
I'm sure that there will be more vigilance about this.
There is starting to be an awareness about this due to
the longterm survival of children that were treated with this med for childhood cancers and are developing heart problems in adulthood.
They say that taking Co-enzyme Q10 during A/C can reduce
heart damage.
Thats one vitamin I don't leave out of my regimen.
Hopefully, the meds will keep you and Puppy stable.
We should have been celebrating the five year happy dance for you---you are not supposed to be going through this business.
Darlene- I can't believe you have gone thru so much already
Indi-I'm having the same symptoms you are describing. Because of the blood pressure and the heavy sweating
and fatigue My doctor wants a complete Thyroid panel.
Alot of the BP meds can cause orthostatic Hypotension if you get up too fast. You can get dizzy, and black out or faint.
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Susie -
Shirley, It could be that your insurance company decided they
wouldn't pay for hospital visits by the primary. The hospitals are not crazy about it It takes money
out of their pocket when the admittance and subsequent visits and discharge are not done by their Hospitalist.
I've been doing the billing for an inner city family practice for 17 years and hospital is one of the few remaining places a Doctor can actually get paid equitably.
I was billing when the first Medicaid HMO's came in and signed up the patients. The Doctors should have seen that one coming. The Doctors gave away their power and in the beginning in return they recieved big bonus's from the HMO's while they signed up more and more patients. The would actually sit in the waiting room and solicit patients. Solicit them with Turkeys, Eyeglasses, one even had us scheduling free rides to dentists, eye doctors--you name it. Bet you didn't know your Doctor's were made to schedule a chauffeuring service.---Then came the paperwork and the endless audits---Has your Doc ever counseled you on the temperature of your water heater?--Or whether you have a lock on your gun? --Your last Tetanus immunization? Doesn't matter if your having a heart attack. They'll take your panel away if you flunk enough water heater questions!
Then the bonuses disappeared and the cherry picking started.
The newborns and pediatric patients started disappearing.
Just snatched away and handed to the hospital practice because they pay way more than any other age group.
And it just so happened that the hospitals owned part of the HMO's---then the hospitals opened teen clinics; so that part of the panel disappeared---why teens you ask? Easy money for the hospitals--As a group ,this is the least likely to even visit
a doctors office.---They can just sit back and collect the capitation money with little effort. So what is left are adults who can come into the practice every day of the month yet that Doctor will only get 19 dollars a month for that patient no matter how
many times he is seen. What else are we left with---the very ill senior citizens who take an amazing amount of time. In some cases well over an hour and not fee for service but capitated at a fee well below medicare. That and the mentally unstable
who no hospital wants in their waiting rooms.
Don't even ask about remittances and resubmissions. At one point Cigna decided
it would just downgrade every visit submitted to them arbitrarily. Did they think no
one would notice. Blue Cross is notorious for not paying if there is any other insurance suspected. The patient has to call them and swear not before they will pay.---They are also great at not paying because of pre-existing conditions.
Try to pay staff and malpractice with that kind of income. Our staffs health insurance was dropped this month.
I think this whole thing will come crashing down on them when the hospitals have put the last private practice out of business. They will be forced to have to take all those patients like ours that have fallen through the cracks----Then all the hospitals will go bankrupt trying to care for them on what the HMO's will pay.---------The Whole health system will collapse. Then We'll Get Universal Health care.
The whole subject makes me nuts. -
If I had a muga each year, the doctors would know what my ejection fraction was. If the number had gone down, it would have indicated problems and Im thinking it could have been treated sooner. When I got to the ER my ejection fraction was 25% and the normal range is 55-60%. There is also a BNP blood test which can help diagnose heart failure. One of the ladies was saying that she had mugas while doing herceptin and when her ejection fraction went down, they stopped chemo for a couple of weeks until it went back up.
When I got to the ER, the first test they did was the BNP blood test. The normal range is 100 and mine was 900. Next they did a chest xray and an electrocardiogram which showed lots of fluid on my heart and lungs. It also showed my ejection fraction was 25%. I was supposed to have the chemical induced stress test so I would not have to get on a tread mill but that was actually what I did. Then I had a heart cath which the cardiologist said gave the best and most accurate results. They drew blood several times a day for the first 3 days and I was on a nitroglycerin drip for 3 days. Im taking about 7-8 pills a day.
My heart cath showed that I had absolutely no blockages. I have never had high blood pressure and my good and bad cholesterol is excellent. Im not overweight. I dont smoke and I dont drink. The cardiologist feels confident the adriamycin and radiation are the probable cause for the damage to my heart which is in the top portion of my heart.
Debbie -
Hi Margerie,
I think there is no proticol in getting heart tests for healthy people.
If someone begins to have heart problems, then I'm sure their cardiologist has proticols for extensive testing.
Oncs dont really care.Their thing is killing cancer, and adriea happens to be the gold standard, the Cadillac of cancer killers.
My onc, that cancer-killer, actually insisted I have a MUGA scan before I began my chemo.MUGA seems to measure the strength of the heart, in pumping blood all over the body.I, although old as dirt, aced it.Both my now-gone dog and I have excellent heart function due to many, many years of walking 2 miles daily.Not for weight-loss , but for heart function!My vet used to say he could hear Rupert's heart across the room:BOOM, BOOM, BOOM!!
But my onc, I think, HAD to be careful, because he was VERY heavy-handed with the chemo dosing.
My daughter, a chemo nurse, actually took him to task when he was killing me with Taxotere, and had him pull back the dose a bit.
His MO is "Hit it REALLY hard .First chance is the best chance."
While I was on chemo, I got some really crummy SEs, such as are described here.It wasnt during Adria.It was during Taxotere, which "like to kill me." They were actually SEs of low red blood cells.Which can give all these SEs.I, the old walker, got winded climbing a flight of stairs.I had to stand and gasp halfway up.Dizzy, faint, etc, etc.
NO FUN.
This was the time my post-chemo shot went from just Neulasta,, to that PLUS Procrit, for RBCs.
And the Procrit actually helped!
I actually felt pretty good all through my chemo, hard as it was.And I walked my 2 miles daily!
I never complained about anything to my onc.What's to complain?They're dumping poison into you'r veins.But my onc is great.He anticipated my every problem.He could look at me and know.So he started Procrit at the needed time.
At end of chemo, my onc requested an end-of-chemo MUGA.
GEDOUDDAHEAH!!
No more pencils, no more books, no more doctors, or tests,GOODBY!
I understand heart problems can occur any time afterwards, and yes I did have left side surgery and rads.I actually have, maybe, a broken rib from rads.Cant curl to cut my toenails comfortably.(Too blind to see them from afar).But heart, so far so good.
So if that goes bum, I guess I WILL have tests.
PS.I take HEAPS of CoQ10:250 mg every day.It's helpful to the heart. -
Susie, you scare the pants off of me!!!
I was sitting in the waiting room when a gentleman told me that our doctor was no longer going to the hospital. He said his brother was also a doctor and he was not visiting his patients at the hospital either. The reason why...less hours.
I asked my internist that day about his not going to the hospital. He assured me that I would be taken care of by the hospital internists. They keep in contact with him about his patients. He also said that sometimes he makes a courtesy call at the hospital.
My doctor is two or three years younger than I. I started seeing him in my 30's. He was a fairly new doc at the time. I've been with him...oh, let me count the years...24 or so years. We've kinda grown up together. LOL
He was so concerned when I got my bc diagnosis. I went to him when I found the lump because my gyn is at Duke..two plus hours away...and I thought I just had a cyst and wasn't going there for that! HA! My doctor here talked to me for some time....supported me and still does. He says I have a good attitude. IF ONLY HE KNEW THE TRUTH!
All that stuff you were telling us...wow, it makes me crazy. It's a shame. There ain't no more of them ole country doctors. 'Course, medicine has changed greatly since them good ole days.
Shirley -
I only got one Muga and that was prior to chemo. No one has mentioned it again. Haven't even given it a thought. Now I'll start worrying.
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AWWWW, dont worry, Shirley!!We are tough!(Plus worrying will only stress your heart!)
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Okay, Joan. I'm not going to worry. Tonight I'll worry about going to the dentist tomorrow to have my teeth cleaned. It takes me about three hours to get ready so I'll also worry about getting there on time.
Shirley -
First off I want to say this is a great thread where everyone is expressing opinions without personal attacks.
I walk a fine line sometimes on message boards; here I try to post as a breast cancer survivor, and not as a doctor. I'm sliding into my doctor persona a little more on this one, but I don't want anyone to feel inhibited from telling about their own doctors and experiences.
Debbie, to answer your question about what could be the answer to our healthcare system, this idea comes from my brilliant husband:
1. Everybody gets Medicaid. Everybody. Those who are poor get it free. Those with low income pay a sliding scale. Those who are blessed with financial means pay a fuller share. Doctors file claims to one payor and everything is simple. A smoother organization of the billing system would help as well. Medicaid would still probably have to limit what things it covers, as it does now.
2. Those who want more than Medicaid covers and can afford it pay for deluxe coverage.
Simple, eh? Most who dislike it as a two-tiered system haven't dealt with the 100 tiered system we have now.
Saluki, thanks for telling it like it is from the billing standpoint.
Gina, ask your doc about the heart evaluation. There are many ways to assess heart function. Some docs use a MUGA scan, which involves dye. Some people are allergic to or can't tolerate dye. Some docs use a cardiac echo (2-D echo)(that's what my oncologist ordered before I took Adriamycin). It can also measure the heart's efficiency and function. I was also curious about why a second echo was not done after I had finished my chemo. My oncologist didn't have a great answer for that, but said if I ever get heart symptoms or if I ever need chemo again, another one would be done at that time to compare to my baseline. If new symptoms are developing during chemo, the oncologist needs to decide how to plan further doses and may delay some doses or change things if the cardiac function is falling below a cutoff level. -
Debbie I want to thank you for bringing this to our attention.
I was feeling all virtuous or something because I just aced my 4th MUGA at 76% and the onc and I were joking about how I seemed to be thriving on herceptin after the dose dense AC.
Clearly complaciency is not a good idea. I hope this all turns out OK for you and that the meds do the job.
Take care -
Thanks to everyone for the well wishes! It helps more than you know.
Being dxd with congested heart failure at 51 just kinda floored me. I've been thru aggressive breast cancer and melanoma on top of that! I thought I had read everything that you could possibly read about bc and all that I went thru! But somewhere along the line I missed symptoms for heart failure. Plus somewhere along the line I missed the importance of a muga and did not demand to have one. I like my onc but he does not believe in doing extra tests unless there are symptoms to warrant them. I have questioned this several times and his explanation is that actual symptoms give a better indication and when you start running all these extra tests you have a large number of false positives that must be dealt with. But I believe now he missed the boat when he didn't request a muga at least prior to and after chemo! You would think it would be standard for those chemo cocktails that can cause heart damage! -
Doc,
Your answer about Medicaid confused me at first but now I understand that you are saying Medicaid would be the insurance for everyone and premiums would be based on income. I have not thought about that but it REALLY sounds like a great idea. It would probably add another level of beauracracy to our government but it would ensure that everyone has access to insurance and health care! I like it!
Debbie -
I had an echocardiogram before I started chemo, too, but nothing afterward. I'm definitely going to ask why there was no followup.
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Debbie, how are you feeling by now? Are you home and less short of breath?
The beauty of the idea to let everyone "buy" medicaid is that a government bureaucracy is already in place, they would need to add more employees because more customers would be in the system. Medicaid could stop wasting time re-evaluating everyone every 1,2,or 6 months to see if they are still eligible, because everyone is eligible. The only difference among customers would be if they pay for the coverage and how much. -
I was released from the hospital last Wed night after being in there 6 days. I feel much much better and I'm not really having any shortness of breath now. Once they started the lasix in the hospital my breathing got much easier! I'm taking about 7-8 different meds and I tire easily. I'm hoping this will go away once I get used to all the meds. Im getting out and about trying to do normal stuff. It would be easy to not do anything for fear of what it could do to my heart! I go back to the cardiologist on 5/30 and Im hoping he will tell me I can go back to work! I worked when I did chemo and I know people thought I was crazy. But it was the only normal thing in my life during that time and I really think it helped to keep me sane!
Debbie -
WEll! I had a muga before and after my chemo. I didnt ask for it before, my pcp ordered it. But afterwards I talked to my onc about it because of all the people here on bc.org - I have learned so much from all of you. So I made sure I had a muga after chemo and 3 months after herceptin.
51 with congestive heart failure is just too youngd. But for some, without the chemo cocktail - they might not be celebrating a birthday.
I do believe there are long term effects from chemo, we havent even found out about. Pretty scary.
Nicki -
My husband was a doc who testified in DC about medical costs. Ted Kennedy is absolutely against a two tier system. Most european countries do allow multi tier and public ,private mix.Stark is also a mjor player in health care, not sure where he stands on tiers. Just an anecdote, but I have BC individual,best traditional, but it pay anly 20& for meds. If i return to the hospital I can get Neulasta covered. I can not take it as an outpatient. There will be additional cost to the hospital- you can iamgine the add ons, but the insurance co will only pay that way. Same as for Emend? Beth
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I just read a post on the AHA web site where a young lady age 26 had no job, no insurance, $300K of medical bills from her heart problems and is unable to get disability at this point! It's sad. People just don't understand that a major illness can wipe you out financially if you do not have decent insurance!
Debbie -
Puppyfive,
I was thinking of you and wondering what you had found out about your right breast?
Debbie -
I wasn't told that having a lumpectomy with radiation might mean I couldn't do reconstruction in the future. As it turned out I had a recurrence close to lumpectomy area. Masect in Jan. Don't know yet if I can have reconstruction but will find out soon.
Also found out that radiation might damage my heart. No one told me that either!
So now I read that AC chemo may only help 8% - great news isn't it!!!! -
I did recon after radiation. Also, the radiation is much better today than it was 5 or even 10 years ago. They use 3D CT imaging to map the fields to minimize impact to the lungs and heart. If you have concerns you should address those upfront with your radiation oncologist. Mine even gave me a printout of the 3D fields with the calculations of how many rads were hitting each area and I could see that a very small, small part of my heart was in the field. I do have some minimal scarring on my left lung that shows on scans now but I have not been impacted in my dialy life. I can still do my daily treadmill walking like I did before diagnosis.
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Hi Debbie, sorry for not posting!
I had my MRI and MAMMO, and they said it is scar tissue!
I have to except that because i know mri's dont make mistakes but my LUMPS are growing and more painful!
I go to the Neurosurgeon tomorrow I have an Anurysum in the brain, so i guess i find out what next!! Just wonder if that has somthing to do with our heart problems!
sounds like you have been through the ringer sweetie, sure hope things change for you soon!!! xoxoxo Puppy -
The chemo nurses told me that damage from Adriamycin can show up to 20 or more years later. So, we always have to keep that in mind and make sure that our doctors do as well.
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Just bumping this up. I find this a very important thread
and would hate for it to disappear. Thank you Debbie for bring this to everyones attention and for sharing your story with us.
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Susie
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