Anyone Discontin Hercep <LVHF, but OK on Tykerb?

[StillHere]

Since my CA27-29 is steadily going up, I am trying to be proactive and research what I may ask for next if needed. Had to discountinue Herceptin after 7 mos due to LVHR of 40. LVHR did return to normal after 6 mos. I am still on beta blocker and ace inhibitor just to be on the safe side. When I bring up the question of "Could I take Tykerb in the future?" to my Oncol and Cardiologist , they both say "Let's not go there. You are fine right now and there is no reason to believe you will be any different in the near future". I do understand their reasoning, (must keep a positive attitude) but I do so love to always have a plan for what if......
Also, is anyone just taking Tykerb w/o any form of Chemo? Thanks for any input you may have. Peace be with you. Karen

[AbbyDawg]

Hi Karen!

I just started taking Tykerb on 8/9/07. I have also been taking Arimidex for nearly a year, so am on both. I did not have Herceptin last year so I was able to qualify to get in the Tykerb TEACH trial/study.

I know this probably doesn't answer many of your questions but as soon as I have time this week, I will post here again with my complete Dx and Tx.

I am so happy to be part of the study ... and am hoping my feeling crummy lately means I have the drug and not the placebo.

Nice to meet you ... will talk to you soon!

AbbyDawg

[SoCalGal]

I just asked my onc if I should have a muga for a base line and he said that tykerb is barely toxic to the heart - much, much less than herceptin.

My onc's plan is to get my mets under control w/carbo-gem-tykerb and then to just stay on tykerb alone. Chemo for 6 months then just tykerb daily.

Hope this feedback helps.
--Flori

[chrisy]

I didn't get dangerously low on Herceptin, but still I did have an improvement once on Tykerb.

[Lolly]

My LVEF got as low as 49% over the six+ years on Herceptin. After 2 months on Tykerb/Abraxane I was back up to 65%.

[Adriana Mangus]

Dear Karen:

What is the doc saying about the Ca2729 raising? I was on herceptin alone for about two years and the ca2729 keep on raising also, so the onc added navelbine to herceptin. I think that you should be on some type of chemo since the tumor marker is going up..Please keep us posted...Good luck...

[StillHere]

When I saw my oncol in June and markers were going up every 3 mos, he ordered an additional CA27-29 for 1 month later in July. That marker also went up, so we did a full body PET scan. Just showed evidence of inflamation, but no tumors. We discussed going back on AI. I tried Arimidex for 2 mos and refused to take it any longer due to side effects. Have been a tamoxifen for the last 1 1/2 yrs. If I do the AI again, I will request the estring, or cream. I know this is contrary to everyone's thinking here, but I really don't want to do chemo again. My next appointment is Oct 3rd.