Mom has mets to liver...pls help

Hi:

Im new to this msg board, although I have been on webmd for the last two months posting

inquiries. Thankfully Ive found this board which is more specific to my mothers case. My mom's

history is given below and if anyone can give me some input on the questions below, it would be

greatly appreciated.

1. In Dec 2003, my mother was diagnosed with a 1.6cm lesion in her breast (Stage 1), no lymph

node involvment. ER/PR status - strongly positive. HER statis = positive to the degree 2.0 (I

believe 3.0 is as positive as u can get and 2.0 is borderline) (Question - am I right?)
2. My mother underwent a lumpectomy, radiation to her breast, chemo (Adriamycine) and harmonal treatment (Tamoxifin).
3. On her follow-up (9 weeks ago) , CT scans revealed that the cancer had metastized to the liver and a 2.5 cm lesion was observed in the liver. An FNA and/or biaupsy revealed that these cancer cells were now ER-..The Drs were baffled and concluded that the test is wrong and continued to treat this as an ER+ cancer.they put my mom on Arimidex (instead of Tamxifin)
(Question - Is this normally done - I mean do Doctors treat metastized cancer cells to have the same properties as the primary cancer cells). The doctors also concluded that the cancer cells are still HER + (as per prior tests at stage 1)
4.2 weeks ago a PET scan revealed that there were infact many microscopic lesions in her liver and some in her vertabrae (although the oncs think the PET scan, since its so sensitive caught inflamation of the bones (as mom already had this) and reported it as cancer - again the opinions of four doctors is split - 3 think its not cancer to the bones. and have advised us to concentrate on the liver.
5. An RFA was being considered about a week ago, but the CT scan had to confirm that the other lesions were infact still micro-scopic. As it turns out in 8 weeks these microscopic lesions which were previously undetected by CT were now detected.. to top that the 2.5 cm lesion had grown to 3.1 cm -so an RFa was out of the question. (Question - is this unusual growth I mean in just 8 weeks?)
6. My mother started chemo (Taxol with Herceptin) two days ago

Questions
1. I know many have asked this before - does anyone know the survival time for this. More specifically for liver mets with HER + status? Anyone who has survived this for a long time ...pls pls post...Im in need of inspiring stories...esp ones in which HEr status was + and mets to the liver...would really really apreciate it.
2. Any alternative treatment that has proved successful
3. Any treatment that my mom hasnt yet tried but has proved effective
4. My mother is in Pakistan and does not have access to clinical studies..so if anyone knows of any new drugs on the horizon, pls let me know.

Thats it for now..I apologize for the large post and my many questions...but would really appreciate some or any help.

Thank you and God Bless

Shahyan

Dear Shahyan
I have had liver mets since 1999, and have been on herceptin since 2 years last November. I am Her+ and it has knocked the tumors right back to practically nothing. It works quite quickly on them, it did on me anyway. I am very well and hope to stay like this for a very long time. I am only 48
Don't give up hope Judi M

Dear Shashyan,

You Mom seems to be on the right track with her chemo. Taxol and herceptin is a proven combination with a high response rate. In answer to your questions:

1. As anyone one from this board will tell you; survival time is a topic very few of us put any stock in. The numbers are outdated since herceptin and herceptin plus new chemo combinations. As well, most responses are very personalized. One of our members, (Esther I think), has been on herceptin or a herceptin/ chemo combination for over 10 years, and she is not alone.

2. two proven alternative / chemo combinations are IP6 ( http://www.ip-6.net/secondpage.html ) and Oleic Acid which is Omega 9 fatty acid found in high concentrations in both olive oil and flax seed / flax seed oil ( http://www.gaiaresearch.co.za/flaxseedoil.html ). Oleic acid has a particularily strong response with herceptin.

3. If the Herceptin plus Taxol fails then another well researched and well tolerated treatment is Herceptin plus navelbine and Xeloda or herceptin plus either one of the two. The trick is to monitor the liver mets carefully (monthly) so that you have enough time to switch over to a new combo if there is a chemo failure.

4. The next big thing seems to be Lapatinib ( http://www.medicalnewstoday.com/medicalnew...0&nfid=rssfeeds ). It is still in trials and I don't know about availability.

I'm sure others will also give you very sound information or advice.

Best of luck to you and especially your Mom,

Al

Hi Shashyan,

I understand how concerned you must be, but rest assured that there is hope. My wife Caryn (age 42) was diagnosed with mets to lungs and liver in July of '04. She has been NED since early January. The combo that worked for her was Gemzar and Herceptin and we're now working to get her into a vaccine program.

Best regards,
Eric

Hi Shahyan, welcome. Your mom is lucky to have you as you are so well-informed and always seeking new information. You have come to the best place for it. I have liver mets and am doing well (see my posting in Al's mini roll call above for history). I know there has been discussion in thepast on this board about er+ switching to er-, etc. I can't remember what some of the folks discussed, but I know there is experience out ther. If you search by this topic maybe you'll find some answers. Keep us posted and our best to your family!
Love, Joy

Dear Sha,

Just a note of encouragement regarding my wife, she presented three years ago with a 7cm tumor in her lung and three small liver mets. Long story short, she had a complete response to herceptin and Gemzar which reduced her liver tumors significantly and the remaining tumors were given RFA. In the mean time the herceptin totally eliminated her lung tumor.
Subsequently, the scar tissue in her lung presented with two small tumors which resulted in a surgery to remove the upper lobe of her lung. A couple of months later she had a stroke and the MRI's found a small brain tumor which was wiped out by Gamma Knife surgery.
Last week her scans were clean and she is currently NED. She was originally diagnosed with breast cancer 13 years ago last December and she had her recurrance after 10 years of NED. Until January of this year she was two years NED, and with these last two treatments we hope that she will continue with NED for a long time. She takes weekly herceptin (she is taking 6mths of Gemzar now since she had her lung surgery) and will continue to do so. The Dr's think that the herceptin is still working and that these small tumors in the lung were from a few cells that survived in her large lung tumor. The brain met might not have been cancer, but was caught at a point that it was so small (3mm) that they do not believe that it should recur.
During all of this my wife participated in the vaccine trial at the University of Washington and with all of this we hope that we can still achieve another long term NED.
As regards your mother, our Dr.'s suggested that before they would give my wife RFA that she would have to have chemotherapy that would control the the tumor growth. (My wife's one liver tumor was about the size of a golf ball.) The Herceptin/Gemzar did the trick for us and caused the large tumor to shrink to the size of a marble. When this was achieved the Dr.'s RFA'd the residual tumor and the two other small residual tumors remaining in her liver.
Don't give up hope and by all means keep on fighting. You do not know which drugs will ultimately work.
Good Luck and God Bless!
Brian

oof...u guys are the best!!! In almost two months this is the most positive Ive felt..just know what you are doing has helped me soo much and Im sure so many other people, that just for this God will be looking after you.
"al from Canada" - where exactly are you in Canada...Im in Toronto and will be moving back to be with my mom in two weeks..if you are in TO, have you heard about the herbalist shop "Thuna" - people swear by it...anyways just thought I'd let you know...also has anyone heard about Noni juice and MGn 3?
Waiting for the day someone posts "Cure for Cancer"

Thanks, Thanks and Thank you

Shahyan

Dear Shahyan,
We are in Waterloo County, west of Toronto. I had Linda on MGN-3 when she was first dx. 18 months ago but stopped buying it when Lane Labs the manufacturer was shut down by the FDA. Noni Juice, I havn't read enough to convince me to spend the money. We have a few heakth food stores her but I generally buy on-line from life extension or i-herb.com. Where in To is Thuna?
Regards,
Al

Hi Shahyan,
I was diagnosed last May, 2004 with a 3 cm main met., in addition to liver and lung mets. I have responded to Herceptin alone, and am currently teaching third grade. I feel fine, and have not missed a day of school during this school year inspite of the colds and other things third graders bring in to the classroom. You never know how an individual will respond, but your mother and you should remain hopeful. This is an excellent place to receive support and inspiration.
Best wishes,
Barbara H.

Dear Al:

The shop's name is "Thuna Herbals" -its very unlike other herbal stores and infact I was recommended this store by another herbal store. The person to talk to is Evelyn or Roger. I, unfortuntley could not contact these two, but met with herbalist Helen Yong and she recommended the following for my mother:
1. MGn 3
2. Pau D'arco
3. Essiac
4. Borututu
5. Siberian Ginseng

She did say that there are no guarantees, but she has seen people live for 15, 20 years on these alternatives (even for advance stages). She also informed me that Lane Labs were closed down because their claims were based on people and not the rigorous testing of the FDA. I think a company called Brascan, now supplies MGN 3. If my memory serves me correctly IP6 is very similar to MGN 3.

Thuna's contact info is:
298 Danforth Avenue, Toronto ON M4K 1N6
Tel: 416-465-3366 or 416-465-3511

Pls let me know, if you find anything

Best Regards,

Shahyan

I have been on Noni Juice on and off for about 5 years, it is expensive I know but it works great when you are on chemotherapy and seems to keep you quite well, I was told that it works on the T-cells and your immune system. Judi M

Hi Jodi:

Just a quick question. I read somewhere that anti-oxidents interfere with chemo - is this true? and if so what exactly is an anti-oxident. Is Noni juice an anti-oxident?

Thanks

Regards

Shahyan

Hi Shahyan,

In response to the question to Judi, the anti-oxident topic was discussed 3 postings prior to yours. Just follow this link:

http://www.her2support.org/forums/in...howtopic=21172

Regards,
Al

Noni Juice is not an anti oxidant to the best of my knowledge. When I was first diagnosed I went to a great naturapath and I was on anti oxidants like Selenium. I was on chemotheraphy at that time and she just said not to take the supplements on the day of the treatment. I stayed well on chemo, I have only read it on the internet about not taking anti-oxidants when on chemotherapy have not seen any test results that have ever been done on it. Sorry about the strange times I answer things, I am in Australia JudiM

Hi Judi,
The test results are on the link I posted earlier for Shahyan.
Al

Thanks Al and Judi:

Judi dont worry abt the time difference...I think with my current sleeping schedule Im on more or less in sync with your time.

[StephN]

Hi -
I am a little tardy in responding as I was away for a few weeks.
But, I am here to tell you that liver mets CAN be beat. I had almost 60% of my liver in tumors over 3.5 years ago and cleaned it out with a Taxol, Navelbine, Herceptin combo. Been on maintenance Herceptin since reaching NED (no evidence of disease).
Am one of those making new stats for tough situations.

If you go to the "community" link in the line just below the photos, and then cllick on "stories" you will find my story and some others that beat some pretty stiff odds with various mets.

Wishing your Mom and you all the best in healing.