Herceptin stopped-now what?

emmastarr · 04-11-2011, 12:50 PM

Well, I had a call from my herceptin nurse today to say that my herceptin has been stopped due to my low EF score of 48%, I was 64%. I'm not sure yet if I'm on a break or a permanent stop, will find out Weds morning. Am feeling quite nervous about stopping herceptin and how it's going to affect my survival, having had only 9 out of 18 treatments. Is there anyone else who had to stop without completing treatment but is doing well?
Thanks, Emma

hutchibk · 04-11-2011, 02:00 PM

Emma - bringing it up above 50% from 48% can't be terribly difficult. I believe 50% is the minimum they want to see. I would be surprised if they are taking you off for good... I think they skip a treatment from time to time to help your heart rebound. Please ask to see a cardiologist. Also ask about taking an ACE Inhibitor (lisinopril) and a BETA blocker (coreg).

Separate from that, do other things diligently that support the heart muscle. Walk briskly 30 min a day, take Omega 3, take CoQ10, and drop all caffeine and alcohol from your diet. It worked for me!

Lien · 04-11-2011, 02:07 PM

Dear Emma,

Take a look at my signature line. My tumor was bigger, I had extensive DCIS and never had Herceptin. Right now it seems your risk of heart trouble is a lot bigger than your risk of ever having a breastcancer recurrence. You had 9 treatments and as not everybody is convinced that Herceptin should be taken for a year, you may well have had enough. You had chemo too. You were treated very aggressively and it's very likely that you will never have a recurrence. You also have Tamoxifen to protect you and your tumor was grade 1.

Frankly, if you'd lived in the Netherlands in stead of the USA you probably would not have received Herceptin or chemo. Have you had genetic testing for BRCA 1 & 2?

No lymphatic or vascular invasion, small, low grade tumor, those are all favorable. I think you will be fine.

Hope this helps

Hugs

Jacqueline

emmastarr · 04-12-2011, 01:50 PM

Thank you for your advice and support.
Brenda, will speak to the Onc tom and mention what you said re ACE inhibitors/BETA blockers etc.
Jacqueline, another question for you- are you still doing the CAM therapy/how long did you do it for?
Not sure if I can get that therapy here in England on the NHS, but have heard others talk about the mistletoe shots and am quite interested.

emmastarr · 04-12-2011, 01:51 PM

By the way I was BRCA negative.

Jackie07 · 04-12-2011, 02:59 PM

Emma,

I did not have Herceptin in 2003 when my breast cancer (Her2+++ and ER 5%) was diagnosed. I did 6 FEC for a total of 18 weeks. In 2007 when the recurrence was finally found, I had 6 rounds of TCH and 4 more weekly Herceptin before having to stop treatment due to cardiac toxicity.

It's been almost 4 years since my recurrence and 8 years after my initial diagnosis. I also have a life-long brain tumor situation which is not related to BC. Look up 'HNPCC' on the Internet and see if you have any other risk factors.

Grade 1 is not as fast growing as Grade III and you've caught it quite early... All of these are factors in your favor.

SoCalGal · 04-12-2011, 05:25 PM

There is a new form of co q 10 called Ubiquinol. It is better absorbed with or without food. Here is the link to the one I use:
https://www.douglaslabs.com/ex_ppe/p...itm=200239-30X
I also walk a minimum of 20 minutes each day and follow a dairy and gluten free diet. And take plenty of Omega and other supplements. Basically my omegas have been balanced for several years. My last LVEF was 70%. I don't drink alcohol but I do DRINK COFFEE

every morning and it doesn't seem to bother me.
Hope this helps. Flori

emmastarr · 04-13-2011, 09:46 AM

Hi again girls! I saw the Onc this morning and I am on an herceptin break at the moment. He will do another Echo in 4 weeks to see if my score improves and I have to see him again in 5 weeks, he did say that he would not give me any more herceptin unless my score is over 60%. I thought they could treat you with scores in the 50's but he kept banging on about the risk of heart failure being greater than that of recurrence, not sure if I completely go with that. I'm not sure if my score can go up 12% points in 4 weeks, what do you gals think?

Jackie07 · 04-13-2011, 10:19 AM

You've got nothing to lose to get on a 'walking' plan and 'eating' plan to improve your heart function.

If you reach 60%, you get to continue your treatment. If not, your heart will still be in better shape.

04-13-2011, 10:44 PM

Hi, Emma, I had to take a break from Herceptin because my EF dropped to 43%. I was off it for one cycle and re-tested by MUGA after two weeks from (no) treatment and EF raised to 51% (minimum for treatment was 50%, 60% is really high, my baseline before any treatment was 64% I think). My onc says that she has seen this drop happen in other patients and after a short break the EF comes up and they have no Ef problems again.

Also about a month after this I started experiencing high blood pressure and started taking a BETA blocker. Now EF is consistently 60% and only have to have a MUGA every 18 weeks instead of every 9. A little less radiation is a good thing.

Good luck to you. I started riding an exercise bike on low resistance every few days. Could have helped.

Denise

Jaimieh · 04-14-2011, 07:55 AM

WOW, your oncologist wants your EF rate to be 60. I would have never had herceptin than because I started with an EF of 54 but that was according to a sonogram.

I would just do my best start some supplements and a good exercise plan. You were aggressive with your treatment but it doesn't do a lot of good if you hurt your heart in the process of prevention. ((hugs))

emmastarr · 04-14-2011, 08:10 AM

I've taken your advice and been to the pharmacy this afternoon- got Ubiquinol, Omega 3 and Vitamin D, so will give these a shot. I'm jetting off to Malta in the morning so will try to get some exercise in whilst there and continue with my gym plan, albeit in a more rigorous manner, when I get back in a week. Thanks you for all your good advice and support xx