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Old 01-18-2004, 02:32 AM   #1
pam
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I have bone mets;er+,her2+. I was on taxotere/herceptin for 6 momths, it reduced the tumor, but didn't put it into remission. Then I was on faslodex 6 months & now there's more tumor activity on PET scan. So, now I'm starting navelbine/herceptin. After 1 treatment, I had no nausea, but lots of kind of cramping in my stomach, and also lots of joint/muscle pains. Some questions I have........ Do people take l-glutamine for stomach discomfort? does it interfere with chemo? harmful? helpful? Could navelbine be effective even if taxotere wasn't? On PET scan it showed "more tumor activity" from a 9 to 15 in one spot, from 3 t0 9 in another, etc. Is this signficant? How do you interpret the numbers? My ca2729 was 55, up from 41 the month before. I'm so distressed right now, feeling like my window for hope has shrunken smaller. Any one have similar experience or helpful information. I find a lot of wisdom in reading this board. Thank you.
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Old 01-18-2004, 06:11 AM   #2
Jackie
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Hi Pam,
I also have mets to bones (spine & rib area), am er+, her2+3. At mets dx, my onc sd women with mets to bones often fare better than when metastacized to other areas. Faslodex, then another hormonal (forgot the name, maybe Aromasin?) were ineffective for me and my onc said I just didn't seem to respond to the hormonal class of drugs. I began herceptin/navelbine 07/03 with good results. My initial CA27/29 counts were way higher than yours but they have fallen pretty dramatically. I'm on Prevacid for chronic acid reflux as result of A/C in original round of chemo but still experience heartburn from navelbine that I take Tums for just before beginning infusion....also eat crackers, then am sure to eat afterwards. No fever but seem to have joint pain that doesn't respond to common pain relievers. Some weeks I get cramping followed by diarrhea, some weeks I am constipated. I prefer my system emptying out rather than storing up! I'm also on Aranesp for low hemoglobin(chosen over Procrit because it gets administered thru my port every 2 wks vs wkly shot). Are you on Zometa or Arridia (sp?)? They both help to strengthen bones as well as to lessen bone pain. If you aren't receiving 1 of them, you might want to ask your onc about them. As Lolly said, there are lots of cases of women responding better to one herceptin/chemo combo than another, so please take hope and think positively!! There are so many who post here who have long term stories and have arrived at NED. Maybe I will get to NED, maybe I won't, but the longer I'm around the better the chances that effective new treatments will be developed. In the meantime, I work fulltime, ride my horse 4-5 times a week, and have just as much energy as ever!
Take care and have hope!!
Jackie
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Old 01-18-2004, 08:31 AM   #3
Lisa
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Pam,

I was diax with mets to bones and liver in Sept. Have been on Navelbine/Herceptin since. And I've seen my liver mets decrease by 50% so far. It's harder to say with bones, but doc feels certain they also have decreased. My tumor markers are terrific. So, Pam, do not give up hope at all. Navelbine might certainly work where previous chemos did not. It has been a bit tough on me side effect-wise with hair loss, nausea early on which I've worked through, weight loss and fatigue. I take L-glut twice a day (ideally) for neuropathy issues and it has really helped. Don't forget achidophilus, too, to get your system's good/bad bacteria in check.

You go, girl!

Love and light,

Lisa
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