Just started Herceptin, worried about effects on heart.

amethyst3 · 02-24-2011, 12:19 PM

I'm 39 yrs old and was diagnosed last year with bilateral breast cancer er-, pr- and her2+, grade 3 no node involvement. Had a right MX and left WLE. I am just over half way through my chemo 3 Fec and 1 tax with herceptin plus 2 Tax remain and year of herceptin. It has been an extremely difficult, emotionally and physically challenging journey which has now changed my life forever. Herceptin is meant to be this wonder drug that will reduce recurrence by 50% (so i have been told), but its the damage to my heart that concerns me. As if living with the fear of recurrence is not bad enough, I have to be extra vigilant about my heart too!. When will my visits to the hospital end! Is it really worth it? I ask myself. I have 3 wonderful kids 15, 12 and 5, who cannot wait for my treatment to end and my hair to grow back!. Its so difficult to be optimistic when your read such negatives about her2 being agressive and rate of recurrence is higher than er+. Having diagnosed with bi-lateral BC puts me at greater risk of recurrence? I dont know. Is there anyone out there who has had herceptin and been cancer free for more than 5yrs?

Mary L · 02-24-2011, 12:55 PM

Hi, welcome to our site. There are so many wonderful women and a few men who will see you message and respond. I am a 7 year survivor of Inflammatory Breast cancer and I was given a 28% chance of surviving 2 years. Herceptin saved my life. Yes, Heraceptin has side effects and yes, it can cause problems with your heart. I had to stop Herceptin 4 times during my almost 5 years on this drug. It lowers your ejection fraction in your heart. My onc did Muga Scans to check on my heart and when the number went down, we would take a break and wait till it was ok. Your onc will have a cardiac stress test done first to see if your heart is healthy enough to handle the herceptin. Then they will do Muga scans to keep a check on it. The side effects of this wonderful drug are not bad. Some people have none at all. I had runny nose, brittle nails, red face flushes and dry eye syndrome. The other chemos usually have more side effects. Don't be afraid to use Herceptin. If your onc feels that you are able to take it, feel fortunate as it really works well for those of us who are Her2+++. You will here from many women who will give your their feeling on Herceptin. I wish you the very best. Mary L

ElaineM · 02-24-2011, 02:56 PM

Is Herceptin worth it? Yes !!!!!!!!
There are many people on this site who would not have survived a long time without Herceptin.
Do you want to see your children grow up?
If your answer is "yes" then read some of the inspiration stories posted on this site. You can also rent or buy a copy of Living Proof which is the inspirational Lifetime movie about the development of Herceptin.
You can ask your oncologist to refer you to a cardiologist who can prescribe a variety of meds to help your heart during your Herceptin treatments.
Or you can ask a medical professional about Co Enzyme Q 10, which is a supplement that has also helped some people avoid heart problems while on Herceptin.
You can also take short breaks from Herceptin if your LVF which is part of the heart function gets a little low during your treatments.
Good luck and take good care of yourself.

nsebesta · 02-24-2011, 04:01 PM

My answer to your question is unoquivically (sp) YES!!! The first time I had breast cancer (no node involvement) Herceptin was not available. Mine came back in my liver 3 yrs later. I had the two tumors removed from my liver at MD Anderson, and have been on Herceptin now for seven years. My heart has been good, albeit I'm on a heart medication, coreg, b/c it did get borderline at one time. It was a preventive measure that worked. You are young and healthy and will do just fine on the Herceptin. Good luck BTW - I am a 10 year survivor!!!

Jean · 02-24-2011, 05:53 PM

amethys,
The trials showed that most of the problems with herceptin and heart issues developed on those patients who had A/C along with herceptin. That is no longer a practice. Yes, there is always a risk with any medication. Your dr. will track you as you get your treatments so that they are on top of your health.
Even women who have heart value problems have been on herceptin. (SanDiego is one gal on the site) who is doing just great.

Allow yourself time to adjust to the dx. It is shocking and painful when first dx. then add to it you are a young mother with a family. It is normal to feel overwhelmed and frightened.

The updated information on Her2 is much better than a few years ago. You had 0 nodes, which is favorable.
Try to eat healthy, get some rest (easier said than done with three young kids). Do you have family or friends that support you and offer some help. Did you know there is an organization that will come and clean your house while you are having treatment? That could be a big help for you.

Yes, the treatment is worth it as you have many years ahead of you to enjoy your children and family.

Best Wishes,
Jean

NanaJoni · 02-24-2011, 06:10 PM

amethyst - my diagnosis is very similar to yours (er-/pr-/HER2+++, grade 3, no nodes). Of course, as you can see, I am MUCH older than you. Even though I've seen many milestones (graduations, weddings, etc) for my wonderful kids, now I have 5 grandkids and I want to see as many of those wonderful occasions for them. Chemo was very rough for me and I had lots of complications but since August I've been on only Herceptin. I have only a couple of very minor side effects (runny nose, thin nails, fatigue the few days after treatment) and I will forever be grateful to those who made this drug available for us. The drs, researchers, donors and so many others have given us a chance at life that we would never have had 5 or 10 years ago. Don't worry about your heart - it will be monitored very carefully. Fight hard with every weapon you can find to have as many years as possible. And Herceptin is a fantastic weapon against the beast that is cancer. One more thing, I worked with a counselor during the time I was doing chemo. He was such a help because he could be objective with me when I needed that the most. I could open up with him in ways I would not allow myself with family and friends. Just letting all my fears out and talking about them made them seem smaller. If that's available for you, take advantage of it.

mlbl5k · 02-24-2011, 09:26 PM

I was also 39 when I was diagnosed this past summer. I have three children, ages 13, 11, and 9. I finished chemo three months ago and I receive Herceptin once every three weeks. On Monday I will have my 7th treatment. I have had many concerns about Herceptin. I have had a few "issues" that have come up including a rapid heart rate and high blood pressure. However, I just received a second opinion from another cardiologist on Wednesday. He told me that he was "not concerned about my heart". He felt that I was doing very well and that I needed to give my body time to heal and recover from the chemo. I do have to limit my activity some, which I find very frustrating. I am learning to be patient. As far as the Herceptin goes, I celebrate after each treatment because I know that with each treatment I am being granted more life. This is a hard journey. I pray that you will find peace in the midst of the journey.

amethyst3 · 02-25-2011, 01:33 PM

Thank you all so much for your replies, they have shown me that there is light at the end of this dark tunnel. Being half-way through treatment I have mixed emotions. Some days I will be fine whereas other days i'm constantly crying. Its so difficult to stay strong and composed in front of 3 kidz who have always seen their mummy as superwoman. They are my strength for whom i intend to fight this but they also become my weakness when i am low and think about what will happen to them if i'm not there. Having discovered this website by chance i'm so glad i did. It has given me that much needed boost of motivation and hope. Thank you once again and best wishes to all of you.

02-25-2011, 03:51 PM

Some of your 'moodiness' is due to the steroids. I had never been on them before and was blaming alot of things on the chemo that the steroids were causing.

Mary L · 02-25-2011, 04:10 PM

Jean, I had A/C followed by Taxotere and then when my cancer recurred I had Carboplatin and Herceptin. Stayed on Herceptin for almost 5 years but it did effect my ejection fraction and I was put on Coreg. Did you mean A/C with Herceptin? Just curious. My heart has healed and I am fine. Actually my cardiologist says that if my cancer would reccur, I can have Herceptin again. Mary L

Jean · 02-26-2011, 05:27 AM

Hi Mary,
Yes, I did mean herceptin/ right after A/C...in the earlier days of hercepti treatment, not currently or the last few years. Now the treatment is spaced...Glad you are doing great!!!! Let's hope you NEVER need herceptin again....once did the job.

Blessing,
Jean

Jean · 02-26-2011, 05:38 AM

amethyst3
So normal to feel as you do. Most of us will also tell you that when we complete our treatment of herceptin and he year is up we also go through a strong seperation anxiety. As much as we feared having the treatment then the opposite happens and we are concerned about stopping hercpetin. Being half way through treatment and coming down the finish line is uplifting. Some days are easier then others. You will always find support here....sending you wishes of peace and strength.

Hugs,
jean

laureen · 02-26-2011, 05:42 AM

Herceptin gave me the hope to start my journey of being a mom. Read my signature. The side effects are usually minimal. I have even been thinking if I could go back on it, as a preventative every fews years. I will be 5 years out in august. I know you just want to be done. Trust me I get it. See if you can get herceptin every three weeks instead of every week. The time will go much faster that way. Your docs will watch your heart. I wanted a second opinion, so I went to a cardiologist and was told I had nothing to worry about, that my diet and undesirable lifestyle choices put me more at risk of hurting my heart then herceptin. I had A/C too, which is a double whammy to the heart. You and your heart, physically and emotionally can do this.

Jean · 02-26-2011, 05:49 AM

Laureen,
I have been thinking for a long time that we should have a 5,000 mile oil change and get herceptin. I must agree with your statment. I would not be surprised if in the future that is what happens.

Congratulations on your upcoming 5yrs!!! now that is great news.

hugs,
jean

Mary L · 02-26-2011, 09:13 AM

Jean, I feel the same way. I have been off Herceptin 3 years last Oct. It was my security blanket. When I read messages about others who have had recurrences I just wish I still taking it. I see my onc in April and we will be doing ct's and brain mri. I have a wonderful onc and I have complete faith in him. I am going to ask him about doing some maintenance chemo. He and Dr Slamon do not feel my cancer will come back as it had never spread anywhere other than my mastectomy site. You never get over that "fear". Mary L

02-26-2011, 11:02 AM

Laureen,
So happy for you to become a mummy and wish you all the best for your next arrival in june. I begun my herceptin with my 4th chemo taxatere and will continue to have herceptin for 12months, 1 infusion every 3 weeks. I will be having an echocardiagram every 3months to keep a check on my heart. I too wonder what will happen once the herceptin stops. The risk of recurrence is forever looming over me. But I keep reassuring myself that at present I am NED and hope it stays that way. I'm not going to kill myself worrying about something that may or may not happen. We are presented with the usual statistics by our consultants, mine said I would survive at least 10years!. 'is that all!' I said. One thing I have learnt is that BC is not a 'one size fits all' case.

SoCalGal · 02-27-2011, 03:49 PM

When I was diagnosed 15 years ago, at age 38, er/pr-, her2+++ Herceptin was not yet available. My kids were 8 & 10 years old. Fast forward - - - been on and off herceptin since 2002 - - - saw both kids grow up - one college graduate, and many many other life affirming moments.
There are many easy ways to support heart health while on treatment. Balancing Omega's plus coQ10 has been key for me.
Herceptin will give you the years ahead!
Best,
Flori

Ruth · 03-09-2011, 05:46 PM

Amethyst ~
I had stage 3, Her2+++ diagnosed in 2003 and have been fine, heart fine and thank goodness I had a forward thinking Oncologist that put me on Herceptin without being in a trial back then. It's almost 8 years for me in June. I have not had a recurrence...and no heart issues. My blood pressure does go up whenever I go to any Doctors office but that's the white coat syndrome I think. I take my blood pressure in the drug store and its normal. My Dr.'s say heart is fine. Crazy how your memories can mess your mind up. Anyway, I was 36 at diagnosis with the youngest of 3 at age 9 months. You can do this! I know its scary but stay the course.
Hugs to you ~ Ruth