Herceptin and Heart

[Debbie]

When I got home late yesterday, my oncologist had left me a message on the answering machine saying he wanted to discuss my test results. Well, you all know that when the doctor calls you himself, it's never good news.

I had a MUGA scan on Friday which I generally have every 3 months to monitor Herceptin and my heart. It's pretty much always been within the normal range. Well, this time my LV function went down from around 70 to 56, which is still in the normal range, but the trend is definitely in the wrong direction.

For the first time in 4 1/2 years, he wants to discontinue the Herceptin. He says we should wait about six weeks. Since I have a PET scan scheduled for the end of next week, we'll see what the results are of that. If no disease progression, and a repeat MUGA scan looks good, he'll put me back on Herceptin. If I do have disease progression, he doesn't see the need to re-start the Herceptin. I've been on Herceptin continuously since March 2000. I just wrote a couple of days ago about it being my security blanket (why I like Fridays).

Already this year, I've had disease progression, a cutback on my dosage of carboplatin & taxotere because of side effects (and eventual discontinuation because of side effects); then Navelbine, and last Friday only getting half the dose because I have no white blood cells left (absolute neutrophil count very low).

Am I on a downward spiral, or can I recover from all this? I know you can't answer me, but I have nowhere else to voice these feelings.

When I called my hubby to tell him the news, the first thing out of his mouth (as usual) is you need to change your diet. I said "Well, wouldn't the doctor have told me to change my diet if he thought it would help?" That's his answer to everything--for me to change my diet, and I'm getting tired of hearing it. So, I told him to call my doctor himself and ask all his questions. Maybe that will shut him up for a while!

I guess the only thing I'm asking from you guys is to see if you know of anything I can take to boost my heart function (I'm taking between 100mg - 300mg of CoQ10 daily) and my white blood cell count.

Thanks,
Debbie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dx 12/99 with Stage IIIB IBC at age 34 while nursing my baby
3 rounds Adriamycin/Taxotere, 1 round Taxotere
bilateral MRM 3/15/00
8cm tumor, margins not clear, 12/26+ nodes
ER + / PR -, HER/2 3+
4 more rounds Taxotere with weekly Herceptin
30 rads (electrons)
total hysterectomy 9/00
Femara 10/00 - 1/03
weekly Herceptin for 1? years
Herceptin every 3 weeks for 16 months
in remission 7/00 - 12/02
dx with mets to lung & paratracheal nodes
switched back to weekly Herceptin and added weekly Navelbine 1/17/03
NED 7/03
discontinued Navelbine 10/03 due to neuropathy
back to Herceptin every 3 weeks & added Aromasin
2/04 dx with mets to left femur & enlarged paratracheal nodes
discontinued Aromasin
began carboplatin/taxotere every 3 weeks
switched back to Herceptin weekly (my choice)
Zometa monthly
14 rads to femur
discontinued carboplatin/taxotere 6/04 after 6 rounds due to edema in legs
began monthly Faslodex injections 7/04
8/04 tumor markers up, pain in hip
9/04 begin weekly Navelbine again

[Rozebud]

Debbie - I don't know the specific answer to your question - but would be surprised if your onc takes you off herceptin for a 56! I know it's going down, but my MUGA varies as much as 15 points between visits....sometimes it goes up! My onc. says I'm fine until I get in the 40s. I've had them as low as 50

Diet and exercise DO NOT influence your MUGA and the heart functioning. I had a doctor explain it to me.....I asked what I could do to build up my heart before treatment and was told nothing!! I'm relatively young (34) not overweight, eat pretty balanced, and exercise, and my MUGAs are usually in the 50s. Exactly what does your husband think you could change in your diet to improve things??

Keeping you in my prayers....

[velva]

Debbie,
I was recently taken off Herceptin for same reason, deceased EF from around 80% to50% by echo. Still on Xeloda at a reduced dosage. My cardio doc will recheck me in 3 wks.
Sounds like you're doing all with coQ10. I wish I was more help.

[Ruth]

Debbie,

MUGA scans can have a false positive; whereas they can read a lower reading than is actually there. I also had a noticable dip on my MUGA and then my Onc. scheduled me for an ECHO; which showed my heart to be in great shape and we continued the Herceptin. Also, a range of 56 is good- I can't imagine why he would take you off then. Some women start off with Herceptin at 56!
I have read that taking a break from Herceptin can cause your EF to get better and then you can resume meds but I will still double check to be sure that your heart's EF has taken that big of a dip.

[Steph N]

Debbie -
You are on some tough drugs and did not say if you are getting neulasta or some other red or white cell booster? Sure hope so, as this is a lot to ask from your body without these therapies.
When your blood counts are low your heart has to work harder to keep your blood oxegenated and this can affect your pulse rate, blood pressure, make you short of breath, etc.
I say have another test soon, and DO NOT let your onc take you off Heceptin at this stage.

[Audrey]

Hi Debbie, sorry to hear about your latest ordeal, I have been reading your IBC journal and I admire you so much, always thinking of other young women with IBC and working so hard as a BC advocate. I will keep you and your family in my prayers...Anyway, I am 39 and have had MUGAs in the low 50s and am surprised, too, that your onc. wants to take you off Herceptin already... 56 is still within the normal range.. but maybe a short break from it would be a good idea..let us know what you decide and please don't feel guilty about your diet, this is not your fault!--Audrey

[celina]

Hi Debbie,
Hope you get some good news..NO progression. I know that you've said that you feel comfort while taking Herceptin, but rest assured that if there is no progression, you can go back on after a little break.
I read your history below your post. You said that you discontinued Navelbine due to Neuropathy? Oddly, my sister's doctor is talking about switching her from Taxol to Navelbine because of Neuropathy. Does anyone know if it is possible to have this side effect with Taxol, but not with Navelbine?

[michele u]

I have been on Herceptin since March. My first muga was 56 my latest was 50. I know the your margin of decline was more then mine, but mine was onlyu 50! They told me they would keep me on it until they dropped mid 40's. If your getting it every week, maybe switching to every 3 weeks, or like Audrey said, give it a break, let your numbers come up, which they will, then restart

[Lolly]

Debbie, I have only had ECHO's, but my range is consistently in the mid 50's, and my oncologist is quite happy with that and says, "We'll start to worry if it goes under 50". I agree with Steph and the others, you are well within normal range, sometimes the tests are not accurate so don't worry but have another test done, then see. If you're still in the mid 50's that's still good, and I would lobby strongly to stay on Herceptin.
You can recover from this setback, and as far as the low white cell count, nutrition IS pretty important to keep the white count up, so eat lots of protein, and high protein snacks. But if you're not getting any blood boosting injections this is something to talk with your onc about, they definitely help.
Hang in there, and keep us posted.
Love, Lolly