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ellen
10-31-2007, 06:10 AM
Hello All,

I am posting for the first time although I have responded a few times. I am an almost four- year survivor (Dec) of inflammatory breast cancer and am her2 positive, er negative. I have had two separate mastectomies and been on nine different chemos. I am on tykerb/avastin which I started the beginning of July. I take 6 tykerb pills a day. I had a right pleural effustion which stopped responding to chemo.

I have been doing great in the trial, doctors are very happy, me too. Ca 15.3 down to 15, cea 1.6 , ca 125 32. The big problem are my liver enzymes. They have gone from 48 to 221 in weeks (alt), and three days later, 282. The ast is also going up, now about 190. The alp went from 70 to 78. I am going for another liver panel test Thursday, 3 days after the last one. I have no other serious reactions to the Tykerb and in fact, have handled it quite well given the high dose.

These numbers are moving up fast. Yet my tm went down. Doctor has not reduced my tykerb dose. I am sure I will be going for a pet/ct scan asap ( I had a clean ct scan 6 weeks ago) but my question is, has this happened to anyone else on tykerb? It does state in their literature that ast/alt can be affected but this much? Is this the beginning of liver mets? NO other signs. I am really going crazy because I was doing so well. I really cannot go back on chemo because I have had so very much already.

I thank each and every one of you wonderful people who post and have helped me in ways that outside people could never understand. You have been my lifeline to survival. I really don’t believe I would be here today without this support group. Your courage and information have sustained me throughout this ordeal. With sincere gratitude, Ellen

Roz
11-07-2007, 11:04 PM
I am sorry that I cannot help you, but I remember Esther said that her liver enzymes went up, and I think a few others. Perhaps you can look back through the posts (or put in Tykerb liver enzymes in to the search link above) to find out who may be able to help and email them privately. Best of luck, thinking of you

Carolyns
11-08-2007, 09:34 AM
Hi Ellen,

I have been on Tykerb with Herceptin since May and have not had the issue you describe. I have liver mets already and still do not have this issue.

How are you? Have you been to the doctor yet?

Carolyn

ellen
11-10-2007, 05:02 PM
Just to let you know that the doctor took me off tykerb completely. Glad not to have to swalow those six pills but now I continue to go for blood tests every few days. After 5 days without tykerb, my enzymes went down slightly after a steady rise. Still too high to go back on the drug. The doctor is very anxious to get me back on tykerb asap and I am going on vacation and I will have to have a blood test while I am away and I am to take my tykerb with me because she would like me to go back to five pills. I think she is dreaming, maybe 2 pills if I am lucky. I don't believe my liver enzymes will go back to nornal that fast but I hope she knows something I don't, which I am sure she does. It has been a great drug for me and my scans have been good, she wants me to stay that way. Me too. Only time will tell. Ellen

lilyecuadorian
11-10-2007, 07:15 PM
Ellen ..just wonder if you are having a good diet ...drink water and a lot of vegetables so you can help the liver to clean it self ...another thing I should copy the end of your email in this post I love it that exatly how I felling ...sorry about my orthografy is my second language take care your self

chrisy
11-11-2007, 05:04 PM
Ellen,
Sorry I missed your post - I haven't been keeping up very well. I think I'm in the same trial as you are, but at UCSF The tipoff for me was the 6 Tykerb.

I've not experienced the problems with liver enzymes that you describe, so I can't help you there. However, this can be caused by many factors - my "standard" liver enzymes were pretty normal in 2004 when I was diagnosed with extensive liver mets. So, not necessarily time to think the worst. It seems a contradiction that the elevated liver enzymes would indicate progression while your TM's are going the other direction.

I agree with Lily - maybe time to be on a detox diet - lots of clean water, clean foods, maybe add some silymarin supplements (with the blessings of your doctor, of course).

Hope your numbers get back in line so you can pack those big orange baby's on your vacation!