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Herceptin: Was anyone taken off Herceptin due to heart problems?

BetsyJane's picture
BetsyJane
Posts: 127
Joined: Aug 2011

I was given 9 treatments of Herceptin before my heart infraction rate went too low to continue. I was taken off for three months to see if my rate would go up. I had two mugascans during this time. My heart infraction ratio did improve but not to the normal rate. My oncologist said I cannot finish the last 8 Herceptin treatments due to my heart not returning to normal function.

Has anyone ever been taken off this drug before finishing their treatments because of heart problems? I am very scared that I didn't get the total amount of treatments. I got nine out of 17 treatments.

I had chemo, radiation, nine treatments of Herceptin and presently taking Arimidex for five years.

I know most girls who have problems with Herceptin are taken off this drug a few months and their heart returns to normal where they can finish their treatments. I just never heard of anyone being take off Herceptin for good before finishing.

Anyone out there who didn't finish their treatments? I am very upset about not finishing.

I hope somebody can answer this question and put my mind at ease.

God Bless All Of You.

Betsy

BetsyJane's picture
BetsyJane
Posts: 127
Joined: Aug 2011

My infraction rate was 63 before starting Herceptin. It continued to drop until it went to 51. Then I was stopped for a few months. It went back up to 56. Why do you think they are stopping my treatments. I read about other women's infraction rate dropping lower than 56 and still being continued on Herceptin. I am very scared and would prefer to continue my full treatment. Please help.

BetsyJane's picture
BetsyJane
Posts: 127
Joined: Aug 2011

Sorry - it was a double post by mistake.

tko683
Posts: 257
Joined: Aug 2011

Hi Betsy,
I was on Herceptin for 13 weeks when I had a seizure, then I was off it for 4 weeks. Back on it for 8 more weekes and then my rate dropped by more than 10% from 65 to 55. They took me off it for 4 weeks and have another muga, which came in at 58 I think. I finished my 52 treatments of Heceptin. This was back in 2007. When did they start the 17 week treatment program? If I were you I would get a 2nd opinion about this. It can't hurt and it will put your mind at ease if the other doctor says the same thing. Good luck. I hope you get your answers. Teri

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

My rate was 57 when I started Herceptin, so was not high from the beginning. It was 52 when I completed a year of infusions. That was 2009.

I just had another MUGA scan and my rate was 55.

I'm not sure what to tell you, but I too think it may not hurt to get a second opinion. My oncologist didn't hesitate to give the full course of Herceptin, as long as my rate was in the "normal" range.

CR

BetsyJane's picture
BetsyJane
Posts: 127
Joined: Aug 2011

So far, it appears everyone on this board finished their HERCEPTIN treatments (even with problems). I feel so uneasy about my oncologist discontinuing my treatment.....I'm calling my oncologist office today (where three other oncologists work) and asking for a second opinion. It took me four months before my heart rate went to 56. My last treatment was November 29, 2011. Before I began treatment it was 63. I want to do everything I can NOT to get my cancer back.

P.S. I forgot to mention I got nine (triple doses) of Herceptin. I got my infusion every three weeks at triple doses .... so it was like getting 27 treatments. Perhaps I can get a weekly dose since it probably easier on the heart (not sure)???

Thank you pink ladies and God Bless you all.

BetsyJane's picture
BetsyJane
Posts: 127
Joined: Aug 2011

I told my oncologist that I was very uneasey about his decision to take me completely off Herceptin since my heart ejection fraction did go up a little (to 56). I told him that I wanted to see a heart specialist before they take me completely off Herceptin. He agreed to it. My cardiologist appt. is this coming Monday. Hopefully the cardiologist will find my heart in pretty good working order so that I can continue my full treatment of Herceptin. If my cardiologist tells me that he does not recommend further treatments, I will abide by that. My husband and I have prayed about this and we have much faith in prayer so whatever the outcome, I will know that's the way it was meant to be.

Thank you pink ladies.

tommaseena's picture
tommaseena
Posts: 1771
Joined: Feb 2009

Betsy,
Sorry I don't get on much now but saw this post and had to reply. I am so glad that you stood up to your oncologist and told him you wanted to see a cardiologist.
When I started on Herceptin my EF dropped and was taken off or given a break I should say from Herceptin but the cardiologist gave me medicine to help my heart and then they tested my heart again after being on the medication and then I was able to proceed with Herceptin treatments. I am happy to say that my EF is better now then it was before treatments.
I started treatments back in March 2009 and finished up July 2010.

Best of luck on Monday.

Margo

BetsyJane's picture
BetsyJane
Posts: 127
Joined: Aug 2011

Thank you so much for your reply. I rarely (if ever) stand up to anyone but this is one time I felt I had too. Heart disease does run in my family and I will abide by what the cardiologist says. Hopefully I will be treated the same as you and continue on for the rest of the treatments. I've been through too much to stop now. My wonderful husband put his two cents in as well to my oncologist. I'm so glad we both said something before I stopped the Herceptin treatments. Thank you again for your reply. It made my day!

God Bless All The Pink Ladies and Gents (as well).

Betsy

P.S. I want to thank everyone for their replies. You are all so wonderful.

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

Betsy, I was taken off Herceptin due to heart problems after 8 months. I went from an IF of 66 down to 52. I stopped for 3 months and had only come back up to 54, was off for another month and came up to 55. The onc. wanted me to be at least 56 because I had such a drop. HOwever I was able to twist his arm and continue with Herceptin. At first I had Herceptin infusion every 3 weeks and before my next infusion a muga scan. We did this a couple of times and my IF did not got down, it stayed at 55 so we dropped the muga scans and just pushed through with the Herceptin until I was done. Three months after completing the Herceptin my IF was at 56.

good luck and take care
Mariam

BetsyJane's picture
BetsyJane
Posts: 127
Joined: Aug 2011

Mariam,

I'm so happy that you got to complete all your treatments. I'm sure you were thrilled when you received your last one. My EF started at 61 and kept going down. When my EF hit 51 I was taken off Herceptin. I was getting VERY winded. I've been off Herceptin for four months. My EF is back up to 56 and I am much less winded. Heart disease runs in my family so I'm hoping my IF doesn't drop too low again. I see a cardiologist on Monday. I'm hoping he can put me on something to keep my IF from dropping.

All these stories make me happy that I stood up to the oncologist so I can continue. I want to get every last delicious drop of Herceptin I need. I have eight treatments to go.

Thank you all so very very much!

Betsy

Janet114
Posts: 1
Joined: Oct 2013

I went through this 6 years ago....  efwent from 70 to 48 and they had me stop the herceptin.  3 months later, my ef was 44.  Went to a cardiologist and was put on carvedilol (co-reg).

 

2 years later, my heart was back to normal.  But I never did complete the herceptin.  I think I got thru 5 months.

 

ive been bc free ever since.  My onc reminded me that I may have received all that I needed.... They only ran 1 year trials, not 6 month trials. 

good luck however things turned out for you,

janet

in sunny texas

IDC, 2cm, ER- PR-  HER+, high grade, no nodes involved! thank goodness.  Lumpectomy, CTH, rads.

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