Liver issues, stage 1 to IV?

Hi I need help. Currently I am stage 1 had lumpectomy for 2 masses 1.5cm and .4cm. Pathology showed possible lymph invasion, but seninal nodes were negative. Er-Pr-, her2+++ Finished 4 cycles of A/C and was to start 12 taxol/herceptin then continue with herceptin for 1 year (or I was hoping 2 years once the european study wrapped up). I was not allowed to started herceptin since my muga scan went from baseline of 58% to 46%, onc will redo muga in 5 weeks and alluded to fact that I probably will not receive a full year of herceptin. Last was last week, to make matters worse this week, I was not allowed to have my 2nd taxol treatment because my liver function test had more than doubled from last week. In the 200+ range and they would have given me a treatment if level was 100. I went up from 44 (hi) to over 200 in a week. Did have discussion with onc about possible liver mets and she was evasive. He stated no alcohol this week (only drink 1 glass of red wine each week ironcly to strengthen heart) and will do blood work next week. If evalated then he will do a MRI. He does not do tumor markers or scans unless there are symptoms. "Doesn't want to run around looking" if tumor markers are high as lots of things besides cancer can cause increase tumor markers.
I'm very worried about not being able to have treatment, onc also not sure if I'll be able to have taxol for the 12 weeks. No taxol, no herceptin what if anything is there for me to do to prevent reoccurance with this her2+++ and being hormone negative? If I have liver mets then without herceptin how long will I have left, I just turned 47 with 2 kids. My mother died of bc after she had bones mets found by accident when her hip broke. She only lasted 4 years but her first bc dx was 15 years ago and mets were detected 7 years ago. She didn't have chemo after initial dx just mast, started chemo after mets discovered.
Anyone have any ideas, looks like it is becoming common for stage 1 to progress to stage 4. Anything I can be doing to help the liver and strenghten the heart. It is very discouraging that I am losing my health very rapidly since dx in 7/05. My whole world is turned upside down and nothing I heard from the onc is positive. He originally told me he could cure this, maybe the bc can be cured but if I could die from the treatment.
Is this how others liver mets were found? Should I look for 2nd opinion, what should I be looking for?
Thanks so much, this site has been invaluable for gathering info.

[Barbara]

Donna:

Are you on Nuelasta. WHen I was on Taxol and received Nuelasta shots my liver enzymes (ALT and AST), alkaline phosphatase and CA 27-29 all were elevated above the normal range. At first my oncologist thought I had mets but all scans were normal. It turns out that Nuelasta causes this problem in about 17-20 percent of patients. I hope this is your problem. Six weeks after my last Nuelasta injection all my results were in the normal range.

Barbara

[dberg]

Donna,
My alk phos was elevated when I was on Taxol. For a few weeks it was significantly higher, but my onc said it was from the Taxol, or neupogen, or both. Although it fluctuated it was back to the normal range with a few weeks.

I would absolutly blame it on the taxol. I can't even believe they are testing your liver enzymes while you are in treatment. Try not to worry I am sure they will be fine once you have completed chemo.

Karen

[jhandley]

See posts re. Q10 on this site for the heart and general health. if you are not on any treatment you could build up gradually to 200-300 mg/day. it should help your MUGA. It is fat soluble so take with food (chocolate?). Gradually decrease it before chemo. eg: so that 2 days before you dont take any and then start again 24 hr after taxol finishes. I take about 100 mg from about day 3-18 on my 21 day cycle. It has a half life of 30 hours (takes 30 hours for its concentration to decrease by half). Dont worry about liver enzmyes so much lots of things can affect those. The Q10 will also increase your sense of well being..the only thing you shouldnt take with it is warfarin (blood thinner).

Take a deep breath and hug your children!
Jackie (single mother of Annie 8)

[jhandley]

Hi Donna
I forgot to mention I also have one liver met and that is why I am on taxol and herceptin. You could also take olive leaf extract see Gina's posts on this site.
Jackie

[Gina]

Hi, Donna,

Yes, I know HOW scary it is to be where you are right now--somewhere between Stage I and falling off a cliff...smile.....but when I was there in the spring of '99, most of us didn't even KNOW about Herceptin, much less that it would even work and keep on working ... in my case and that of many of us here on the board, Herceptin has worked for many, many years....and will BE THERE FOR YOU when/if you need it. Probably first thing to consider is to get an oncologist who has a LOT of experience with Her-2 mediated cancer patients and who has used Herceptin extensively AND most importantly, successfully. These oncs are FEW and FAR between, but if you give your location, maybe some one on the board will have some names for you. Sadly, for all the positive media out there on Herceptin, it is shocking HOW FEW oncologists really KNOW how to use it properly. I am working with one patient now who is treated at the HIGHLY ACCLAIMED Georgetown Cancer facility and her onc knows so little about Herceptin that it is humiliating..sigh...but anyway, a second opinion couldn't hurt. Try to find an ONC who "BELIEVES" in tumor markers as most don't but with her-2 cases, when the markers are followed consistently and over-time, they can be LIFE - SAVERS. Mine have been measured consistently perhaps longer than most folks...going back to 1998 for the CA 27/29's and I have had the Serum Her-2 levels measured since Specialty labs first started offering the tests and they have been HIGHLY accurate for me and for folks with whom I have helped who have been lucky enough to be able to gain access to them.

Quick Breath...ahhh...That said, there is a TREMENDOUS amount YOU CAN DO RIGHT NOW to take counter action to what the her-2 is trying to do to your whole body chemistry. I will not BORE the whole BOARD ...yawn..smile...with all my soap boxes...but if you would like to learn more, you are welcome to e-mail me at home any time. I help many folks with her-2 for free in exchange only for the information I learn from studying their case histories as I am trying to compile data for my PhD thesis...should I ever write it or LIVE so long..hee hee hee...smile.

In general, you should try to bring your muga score back up as soon as possible...in addition to Co-Q10, MAGNESIUM is very beneficial to the heart...as are onions, garlic, and chocolate--also, start walking daily..even if you are so weak you only make it one block the first day and back..then two blocks...gradually build up to several miles a day...in the sunshine, if possible. If you are too weak to walk or the weather is too bad..try deep breathing exercises...yoga...isometric...weight lifting...or sound meditation to build your strength up. To fight this disease for the long haul to raise your kids (I'm a single mom with one son), you must get yourself in the shape of an olympic athelete..and I am not joking...at heart you must yourself become a "Lance Armstrong"..smile... You must improve your diet and add spinach with lutein everyday. Try replacing the red wine with a glass of Welch's concord Grape Juice daily mixed with a little POM or Cranberry. At night, take a pure magnesium tablet before sleep and rub some baby Desitin (40 per cent zinc oxide) on your feet to boost your energy and your lymph function so you awake well -rested and full of energy. Add Vitamin A and D to your diet, especially in a fish oil or shark oil cap, take a BASIC (not too fancy) daily multi-vitamin. If you really get into it and want to do something extra to keep the her-2 in check while you can not get access to the Herceptin...try adding Nature Way Purple top real Olive Leaf 500mg capsules to your regimen...these have oleic acid which may help reduce the her-2 receptors by 46% according to Dr. Menendez and others. Change whatever butter or margerine you are using to pure canola margerine or one of the new olive butters... Cook only with olive oil...I could go on and on but the hour is late and every one else has been put to sleep by my crooning...smile...Keep reading this site...inform yourself constantly and CHEER UP, as if you want to learn to help yourself, you have come to the right place...smile.

Best of luck to you,
Gina L. Popp
Gina@Comcast.net
Original DX in 1997; STAGE IV mets in 1999; 6 years and 7 months experience with Herceptin; This month marks my 8th year since mastectomy and I am STILL here...smile.