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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
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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
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