Adriamycin and the heart…

Adriamycin (Doxorubicin) does cause heart attacks and heart failure.   I had a heart attack while going through Adriamycin as the heart damage is evident on all my heart tests and confirmed by three Cardiologists.  The vast majority of emails I get from readers of my blog have to do with Adriamycin Cytoxan Chemotherapy known as the “Red Devil”.    There doesn’t seem to be any rhyme nor reason on why some women have very few side effects, and others have debilitating side effects.  Now I have to give you more bad news to watch for serious heart side effects and not overlook them.

I had symptoms of a heart attack during Adriamycin, but thought it was side effects.  Clearly, I remember the night with shoulder pain, chest pain, and sweating. From then on walking up my steps, I had to rest every other step I was so out of breath.  Immediately, I developed a serious cough and even more fatigue.  You might ask, “Why didn’t you do something?”    Well, in my case the side effects of AC were so bad this seemed normal to me.   I never even mentioned this to my Oncologist as being out of breath is normal on AC.   My heart rate also elevated to 112 beats per minute which also can be normal during AC.

Thank God my Oncologist sent me to the Cardiologist when my Echocardiogram came back with “scary bad results” to quote my Oncologist.   We all blamed it all on Herceptin, but looking back, the symptoms were during Adriamycin.  Herceptin just added to the damage.  The Cardiologist immediately put me on heart meds.  After 10 months of heart meds, my heart has greatly improved I am thrilled to report. 

MD Anderson, the #1 cancer hospital in the USA, recently completed a study about heart failure and Doxorubicin (Adriamycin) with some amazing findings discovering the molecular basis for Doxorubicin’s damage to the heart.  It explains why some people can have a very small dosage of the drug and still get heart damage, yet others who have large doses have no heart trouble:

“Even in this age of targeted therapies, doxorubicin remains an effective agent used mainly in combination with other drugs against a variety of malignancies, including breast, lung, ovarian and bladder cancers,  as well as leukemia and lymphoma,” said Edward T.H. Yeh, M.D., professor and chair of MD Anderson’s Department of Cardiology and senior author of the study.

“However, its use is limited by its cardiotoxicity, which can lead to heart failure,” Yeh said. “We’re excited because we’ve identified the molecular basis for doxorubicin’s damage to the heart.”

The full article can be found here:   http://www.mdanderson.org/newsroom/news-releases/2012/key-discovered-to-how-chemotherapy-drug-causes-heart-failure.html

Because of their findings, MD Anderson is undertaking yet another study to determine if a simple blood test could tell a patient’s risk for cardiac toxicity during Doxorubicin (Adriamycin).   I find that to be absolutely incredible!

But as we wait for that to occur, if you are currently on Adriamycin, watch for these severe heart problems and let your Oncologist know immediately.  Do not hesitate to use that word “heart” when talking to your Oncologist.   If you have taken Adriamycin in the past, pay close attention to your heart.  After my experiences, I would recommend that you see a Cardiologist so your heart can be monitored.  Heart failure can happen many years after taking Adriamycin.

Has all of this been worth it?  Yes, I am still feeling better each day.  That is worth so much.  Do not get discouraged.  It is all overwhelming, but pay attention and speak up!

Protecting Your Heart during and after Breast Cancer

My Oncologist forced me to see a Cardiologist when he discovered Adriamycin Cytoxan (Doxorubicin) Chemotherapy and Herceptin damaged my heart.  I am so thankful he did because I have learned so much that could have gone unnoticed.

A group of Cardiologists at the University of Michigan said Nuclear Stress Tests results showed that  I suffered heart attack during Chemo and Herceptin.    I did have heart attack symptoms like arm pain, chest pain, and breathing difficulties, but thought they were chemo symptoms because chemo will cause these symptoms as well.

There are many new studies out in 2012-13 on the dangers of Chemo and/or Herceptin and severe heart damage.   These studies warn cancer survivors to look for heart problems for up to 5 or more years after you are finished with the drugs.     In most people Adriamycin Cytoxan AC Chemo (Doxorubicin) increases cholesterol, while it is more rare during Taxol.  M D Anderson, the top cancer hospital in the USA, just released some findings on why this Chemo drug causes heart failure:   http://www.mdanderson.org/newsroom/news-releases/2012/key-discovered-to-how-chemotherapy-drug-causes-heart-failure.html

Before Chemotherapy, the protocol is to have a MUGA scan or ECHO cardiogram of the heart.  Then your Oncologist monitors it every 3 months until treatment ends to make sure your Ejection Fraction (EF) does not go dangerously low.  Mine went dangerously low – it fell from 65 to 39 and has remained at 39.   This Cleveland Clinic website gives great information about EF, what is normal and what isn’t:    http://my.clevelandclinic.org/heart/disorders/heartfailure/ejectionfraction.aspx

If you are  prescribed anti-hormonal drugs such as Arimidex or other Aromatase Inhibitors  post treatment, these drugs can also raise your cholesterol.  Tamoxifen can raise or lower cholesterol depending on the person.   Normally, your Oncologist is not interested in your cholesterol levels, but your estrogen levels while on these medications.   Thankfully, my Cardiologist stays on top of this.

Chemotherapy raised my cholesterol.   It raised 36 points after Chemo even though it was normal previous to Chemo.  My Oncologist immediately placed me on a low dosage of Lipitor.  Within 2 months, my cholesterol dropped from 225 to 154 and LDL from 150 to 61.

Oncologists do not check your heart after Chemo is over.  Their job is to keep the cancer away, not be concerned about your heart.  Your General Practitioner may not be aware of the heart dangers after Chemo and Herceptin.   But you need to be concerned about your heart and take actions to protect it no matter what your age.

My recommendations:

1)   Ask your General Practitioner to monitor your heart closely after Chemo is finished.  If they are not already aware, educate them or ask them to research Chemo drugs and the heart.  Ask them to prescribe periodic cholesterol blood tests, liver tests, and additional ECHO or MUGA scans.  Check with your insurance company to see how often they will pay for this.

2)  If you have not had a Nuclear Stress Test, talk to your General Practitioner about this for their recommendations.

3)  Keep on top of this for the 5 years or more after Chemo as you are at a much higher risk than you were previously.  If symptoms show up, immediately get a referral to a Cardiologist.  They are your best line of defense!

4)  If you have any heart-related symptoms, get to your doctor or emergency room immediately.

It is doubtful I would have kept on top of the heart issues had I not been forced to do so.

I don’t want you to make that mistake.

Herceptin — Heart Damage, Heart Attacks and Breast Cancer

Trastuzumab (Herceptin) is a miracle drug but is well known to cause significant heart damage.  A new study was released recently that states heart damage is more significant than was thought previously.

http://www.cancernetwork.com/breast-cancer/content/article/10165/2100302

Unfortunately, I am someone who has suffered severe heart damage as a result of Herceptin.   I was only able to take it 3 months along with Taxol, then my Echocardiogram showed a significant drop.  My Ejection Fraction (EF) of my heart dropped from 65 which was great and I had a healthy heart to 39 during Herceptin and has not improved at all since ending chemo and Herceptin 4 months ago.   My Oncologist sent me to a Cardiologist immediately as he said my EF was “scarey low”.

My Cardiologist put me on two heart medicines for 2 months and did another Echo plus a Nuclear Stress Test.  The Echo did not improve and my cardiologist and the experts reading the Nuclear Stress Test said they think I suffered a silent heart attack.

Dr. Bach, my cardiologist asked me if I had any symptoms.  I had such a rough time through Chemo that heart attack symptoms would have not been noticeable to me.  I do remember my left arm going numb and shoulder pain.  Of course I thought it was related to chemo.

I promised my wonderful Cardiologist that I would call him if I had any heart attack or other heart symptoms.   I then promised I would throw out the Dollar Store aspirin that expired in 2002 that I kept next to my bed and replace it with fresh Bayer.  He laughed and thought that was a good idea.  The Bayer is now in my purse and next to my bed!

So how do I feel about all of this?  I am not sure. If the study about Herceptin and the risks of severe heart damage had come out several months earlier, would I have taken it?   If you suffered heart damage from Herceptin, please contact me at b4Denise@hotmail.com

Herceptin and Heart Trouble

My miracle drug Herceptin has caused problems with my heart.  I’m not happy about it, but there is nothing I can do about it except do what the Cardiologist tells me to do.  My Medical Oncologist says not every Cardiologist gets Oncology and the heart damage it can cause, but the guy he is sending me to does.   Heart problems can be a major side effect with Herceptin which happens to about 25% of patients.  An Echocardiogram is administered frequently during Herceptin infusions to see how the heart is functioning.  Before I started Chemo, my heart was better than most for my age.

Many times, this turns around on its own or after medical treatment with a Cardiologist.  This is all I know!  For once I don’t want to research this too much!    Herceptin is on hold and has been for a month thus far.  My Oncologist tried to console me telling me about a clinical trial in Finland that showed 3 months of Herceptin was just as good as one year.  I’ve had 3 months.  I hope our Finnish friends are correct!!

If you have had Herceptin heart trouble, please comment and let me know your experience or contact me at b4Denise@hotmail.com       Thank you!

Two weeks off from Cancer Treatment

For the first time in 7 months, I have two weeks off from any and all cancer treatments.    When I went to receive my Herceptin infusion this past week, my Oncologist told me I could not receive it because my last ECHO Test showed damage to my heart.  He and the Cardiologist believe it may be temporary and reverse itself, but all drugs are halted for now.  I will get another ECHO in 3 weeks to see my progress.

I wasn’t sure how to feel, but joyful is a good place to start.   This is the first rest I have had, and I must say it feels amazing..  Today I realized that I have been feeling about 10 to 50% alive on any given day.  Today that raised to 75% alive.  I was actually able to stop at a grocery store at 7 pm at night!  This is a miracle for me who has only been able to go to the grocery store 5 times in 5 months and that had to be early in the morning!

My body needs rest and recuperation, short walks and gentle breezes before Radiation begins in 2 weeks and hopefully Herceptin continues.  I will listen closely to my body and do what my body tells me

Herceptin and Her 2 Neu Positive Breast Cancer

I have Her 2 Neu Positive Breast Cancer which overexpresses the protein Her 2 Neu. About 15% to 20% of women diagnosed with Breast Cancer are Her 2 Neu Positive.   Ten years ago, my chance of survival would have been extremely slim with the average of less than a 2 year survival rate as Her 2 Neu Positive Breast Cancer was one of the most aggressive and deadliest forms.  Today, statistically speaking, I have a good chance I will be around for quite a few years.  I try hard not to pay too much attention to those negative statistics because I believe it will influence my thinking!

Herceptin  (Trastuzumab) is a targeted therapy approved for the treatment of people with certain HER2+ cancers. HER2+ cancer cells have more HER2 receptors (a particular protein found on the surface of cells) than normal cells. Herceptin was developed by Dennis Slamon, M.D. PhD  a UCLA research scientist and Oncologist who was tireless in his efforts to get his drug approved.

Harry Connick, Jr. starred in the movie entitled “Living Proof” based on the book by Robert Bazell “Her 2 the Making of Herceptin a Revolutionary Treatment for Breast Cancer”.  The movie was produced by Renee Zellweger about the development and tremendous challenges of getting Herceptin approved by the FDA.  The movie outlined the never-give-up attitude of Dr. Slamon, a fundraiser who saw the drug’s potential and worked tirelessly to obtain funding, and the brave women who volunteered for the Clinical Trials for this pioneering drug.    It is a memorable movie that will touch your heart.

I have been receiving Herceptin since February 28, 2012, first as an adjuvant therapy with Taxol Chemotherapy.  The bad news is I had to stop Herceptin on May 15, 2012 after significant heart damage was discovered.   My Medical Oncologist ordered Echocardiograms every 3 months since I started Chemotherapy.  My Ejection Fraction (EF) of my heart dropped from 65 (which was above normal) to 39 after Herceptin.  It is now October 1, 2012 and the EF has not improved.  I also had a nuclear heart test which showed that I may have suffered a silent heart attack during Herceptin.

Please see my post on Herceptin – Heart Damage, Heart Attacks and Breast Cancer

https://denise4health.wordpress.com/2012/09/23/herceptin-heart-damage-heart-attacks-and-breast-cancer/

*Your Identity After Breast Cancer and Who Are You After Breast Cancer?

A few days ago, a dear friend asked if we could get together.  I rattled off 3 things I had planned this week since I have a little more energy as I work my way through this chemotherapy drug.  She responded that “I sounded like the old Denise.”  And she meant that in the kindest and most loving way.  This friend has been one of my best supporters.  Somehow it struck a cord with me.  Not a bad cord, just a cord.  It made me stop and think. The comments I had made did sound like the old me.  And so much of me wants to become the old me. I always liked who I was.  But I am a changed me since this breast cancer journey, and I don’t know what that really means.  I have to figure it out.

So I’ve been pondering that question since I am about mid-way through surgery, chemotherapy and radiation.  First of all, I thought about all the physical changes with my body.

1)   Since I had 14 lymph nodes removed and alot of nerves cut and damaged, I am totally numb under my arm, partially down my arm, and on the entire side of my bra line.  It is a large area to have no feeling.  When I spray my deodorant on, I feel absolutely nothing.  To shave under my arm, I have to use an electric razor because if I use a bladed razor I can easily cut myself and not feel it.  Just being numb on such a large part of my body feels very foreign and stange to me.  Certainly, I cannot say I am used to it.  I doubt I ever will be.

2)  Fortunately, I have not developed severe lymphedema, which is a swelling of the tissue down the arm and into the wrist because of lymph node removal.  The University of Michigan provided me with a class to help avoid lymphedema which was invaluable.  But lymphedema can develop now or 20 years from now.  To avoid lymphedema, every day of the rest my life it is mandatory for me to wear a compression bra 23 hours out of 24 hours.  It has become a second skin to me, however, I miss just being able to take off my bra for endless hours at a time.

Also, to avoid lymphedema I cannot lift heavy objects with my arm.  Plus, I cannot do things that need repetitive motion like any type of snow or garden shoveling, raking, and other garden activities.  Being an avid gardener, this causes me to be more creative.  When I airplane travel, it is necessary for me to wear a compression sleeve and wrist/hand gauntlet to avoid lymphedema throughout the flight and for 3 to 5 hours after the flight.  And it is necessary for me to take extra precautions to avoid insect bites, cuts, sunburn and infections, in that arm.

Perhaps the biggest precaution I must take is every night is I must elevate my arm above shoulder to sleep.  I must say, this takes a little bit of work and sometimes I roll over and just forget. When I have those “I forget” moments, I pay the next day by arm swelling.    About 90% of the time, I sleep on my couch so I can fling my arm over the back of the couch to keep it in place!      In addition to these things,  I must do exercises of this arm every day for the rest of my life.

3)   Fifteen percent of women diagnosed with Breast Cancer are Her2Neu positive which is an overexpression of a genetic protein in your breast cancer tumor markers. This type of Breast Cancer is far more aggressive with recurrence. Because I am Her2Neu positive, I will need intravenous infusions of Herceptin, a drug that was developed in recent history that cuts your chances of recurrence. That is the good news.  The bad news is I will need this drug for the next 1 to 5 years every three weeks, and as I said, I must receive it intravenously in a hospital setting.  The drug alone costs $50,000 per year.  I pray my insurance company covers the cost.  I’ve not had the courage to ask.

4)  When shopping for clothing, I always have to be conscious of clothing that detracts from my bust line rather than accentuates my bust line.  Is it too low cut, is it too transparent, or too lightweight. This is a whole new way of thinking because my whole life, since my breasts were my best feature, and I would always try to enhance this area.  Every morning when I get dressed, I have to always be aware of this fact.

4) Perhaps the biggest change is finding out what to eat.  My Breast Cancer is estrogen positive.  Hundreds of everyday food items including some fruits and vegetables, are estrogenic.  This is a huge NO for me as estrogen will feed my type of Breast Cancer and cause recurrence.  I am creating a list of what I can eat, and right now, it is very small.   Soy is the absolute worst offender.    I will write more on this Blog about the dangers of Soy, but suffice it to say that 70 to 80% of all foods in the grocery store contain soy.   Obviously, this is astronomical.  Increased estrogen not only feeds many Breast Cancers but many other cancers, a fact that should concern all of us.

5)  Missing a breast is last but certainly not least in the list of changes to my physical body.  I still have a little boob, “boobette” as I call it.  It is far more tissue than I thought I would have, so I am grateful for that, however, everytime I look at my major body changes, I have to think about reconstructive surgery and then nipple reconstruction, which are two separate surgeries.  Breast cancer survivors call them their “foobs” and “fipples”.  That always makes me laugh!  I am not ready to even think about 2 more surgeries.  So I just put on my prettiest bra with my prothesis and forget it.  Well, I never forget it, but I try.  It has taken alot of emotional work, but I realize missing my breast does not define who I am.

Well, these are the physical changes I have been forced to make over the last 4 months.  It takes up alot of space in my head to remember them!     Old Denise didn’t have to think about these things.   New Denise does.  That helps me understand New Denise a little better than before I wrote this.