Pulled off Herceptin

[Joan]

A couple of weeks ago I started to experience shortness of breath and some chest and throat spasms, feelings like my breath was temporarily shut off, almost like I was going to sneeze or hiccup.

This week the symptoms of shortness of breath got worse and it seemed like a respiratory infection – like feathers stuffed down my chest with some crackling sounds and a little minor wheezing at night.

Yesterday, I took a MUGA, test and it came back with a score of 31 and mentioned damage to the left ventricle. The EKG came back as 'non specific T wave abnormality'. They lost the chest and lung x-rays(?) To-day, the oncologist told me that I would never get Herceptin again. I asked if the heart function came back up, would I then be put back on Herceptin and he answered ‘never’.

During chemo, which finished in October/05 I took epirubicin and cyclophosphamide which are both known to potentially cause heart trouble – I guess Herceptin added to the equation delivered the final blow to my heart. I had three infusions of Herceptin, each given 3 weeks apart.

I am feeling very weak and fatigued and can hardly walk up a flight of stairs and I can’t believe that these symptoms came on so quickly. My MUGA test at the end of the chemo in Oct/05 was 63 – yesterday it was 31.

To anyone out there who is, or who has taken the same combination of chemo drugs and is now on Herceptin, please be careful and make sure your heart function is very closely monitored.

I am soooo disappointed that I can’t have Herceptin. I was diagnosed er-pr-her2+ with a Grade 3, 2.8 cm tumor, had a lumpectomy in March 05 and was sailing along until these last two weeks – it feels pretty rotten. I now feel like a sitting duck.

Joan

[RhondaH]

as there was a Finnish study that said 9 wks of Herceptin was just as good as a yr. See attached.

http://her2support.org/vbulletin/sho...&highlight=wks

Rhonda

[Lolly]

Several of the girls here experienced what you have and after a break from Herceptin their heart function recovered and they were able to resume Herceptin, some with the help of BETA blocker drugs if I'm remembering correctly. So, given that you've hopefully had sufficient Herceptin to give you protection from recurrence, your heart should in time recover although I would advise you to see a heart specialist and be followed on this. Then if you should ever need Herceptin again, you will hopefully be able to receive it, although given your current onc's opinion you would perhaps need a second opinion.

Hang in there, and see a heart specialist.

<3 Lolly

[Merridith]

Hi Joan:

As an an adjuvant, the chemo that I took also damaged my heart to the extent that my MUGA was below the minimum % that was needed to get herceptin. Fortunately, my doctor decided to get special dispensation to give it to me anyhow. So of course I'm at much higher risk than normal to have a heart problem. And I'm being watched very closely. I could be kicked off at any time.

I am fighting to improve my MUGA by following a exercise routine to improve my heart function with a special personal trainer. (He knows all about MUGAs & Herceptin!) The doctors told me as well that my heart function will never improve.

But this trainer believes that I have a significant chance of improving my refraction rate. This guy has a special combination of credentials that make him unique and works at a hospital. He was hired to supervise/revamp the hospital's exercise programs for patients. Although doctors know a great deal about disease and the body they aren't taught much about the physiology of exercise. This trainer is a professional athlete and works on strict scientific principles. And he is experienced in dealing with people with heart/lung problems. Besides myself, he is also working with another woman who is on herceptin. He can instruct you by email (that's what I'm doing) if you want to give the self-help technique a try. You will have to buy a heart monitor for while you exercise. (he is very careful).

I believe that I am already starting to show improvement. My next MUGA will tell.
Here is his web page: http://rhinofitness.ca/

Take care and keep on fighting!
Merridith

[Lolly]

Joan, you might also want to do some research on the benefits of a supplement known as Coenzyme Q10. A number of women on this site take it as a protectant for their hearts while on Herceptin, and it's also been shown to actually help repair damage caused by congestive heart disease/failure. Here's a link to one site which helps explain how the enzyme works in the body, and cites some of the studies which have been done on CoQ10.

Introduction To Coenzyme Q10
http://faculty.washington.edu/~ely/coenzq10.html

<3 Lolly

[al from Canada]

Lolly,
I swear by the stuff. Linda's LVEF actually went up while on herceptin...from 56% 20 moths ago to 60% this month. 100 mg 1x day
Al

[suzan w]

Lolly, and Al...I am also taking COQ10...200mg/day...what doses are you (and wife!) taking?

[Becky]

My heart has stayed good too (60%). Since I am not on chemo (just Herceptin), I can take a larger dose (300 mgs per day divided into 3 doses).

I also either power walk or run 4-5 miles per day.

Becky

[Lolly]

When I'm not on chemo, I've taken 100 mgs. twice a day. Since on chemo, I'm taking 100 mg once a day. Once I'm done with chemo in March, I plan to up my dose to 300 mg (100 mg 3 times daily, like Becky) as my LVEF has dropped to 49% (from 55%) since starting Navelbine this time. My onc and I are in agreement that too many antioxidant's while on chemo is counterproductive, so I'll be interested to see how well my ejection fraction improves once I up my dose.

<3 Lolly

[Joan]

Thanks, Rohnda, Susan, Becky, Meridith, Lolly & Al,

I was taking Co Q-10 but now realize that I was talking too low a dose.

Also, apparently C0 -Q-10 brands are formulated differently, as I found out when I went to buy a new supply. The salesperson told me that the one I had been using simply flushes out of your body untless you take it with an oil, such as flax oil.
She showed me a brand that was already formulated with flax oil and another
brand that was not water soluable. I had't realized that the C0 Q-10 I was taking was probably being flushed out of my body without doing much good and also that I was taking way too low a dose.

While I was taking chemo my MUGA scores were: 61% in April/05, 63% July/05
60 % October. When I started to take radiation in Novermber that's when I first noticed a short catch in my breath every once in awhile, but the sudden drop to a MUGA score of 31% last week completely took me my surprise. The nurse told me that they have had a couple of other patients on Herceptin whose MUGA scores suddently plummetted.

I am going to see a cardiologist and I will be working and fighting to get my
heart/breathing back to normal.

I will follow up with the personal training and now that I have the right brand of C 0- Q-10, I will be upping my dose. Your messages lifted my spirits as
combined with not feeling well (31% capacity sort of knocks the stuffing out of your breathing capacity and makes you feel like a wet rag) I was distressed at being threatened with never having access to Herceptin in the future......I
now feel much more hopeful.

Thanks to each of you for your replies!

Joan

[Carol.hope]

Hi Joan. Did you MUGA come back up yet? What did the cardiologist do? I have a similar situation and am just trying to find out what others have been through. Thanks for sharing. - Carol