any opinions?

[kathy]

I just wanted everyone's opinion. I don't know if you'll remember but I posted about my recent CT scans. The leisons in my liver have doubled in size, the largest being 8cm. I've been on AC, Taxol, Navelbine and Herceptin, Taxatere Carboplatin and Herceptin, and now just Xeloda. The Navelbine and Herceptin worked for about 8 months. Nothing else is seeming to phase it. My doctor is trying to get me the GW016 drug but they won't have it until the middle or end of January. I really do like my onc and she is really up on the research and is very caring. She's at Methodist Breast Care Center in Houston, Texas. (medical center) I was talking to my boss and he thinks I need to get a second opinion. I went to MD Anderson about 8 months ago for a second opinion and did not like the doctor there at all. His bedside manner was terrible and no compassion at all. I guess I just wanted to know, do you think I should seek a second opinion given my circumstances. This last blow about my scans have really let the air out of my balloon. I just don't know what to do anymore.
Hugs,
kathy

[eleanor]

Hi Kathy,
It seems your dr is doing everything possible and the fact that you are at a breast center gives me the impression that you are getting the most current info. A second opinion never hurts, of course. Is there a chance of possibly revisiting one of the drugs you were on before, perhaps in a different combination?
el

[kathy]

Hi Eleanor,
I was always under the impression that if one drug works for awhile and then fails, they won't go back to that drug. That might be something to ask my onc. Thanks.
Kathy

[Elaine, UK]

Kathy

I see you've read my postings. What about IP6? What have you got to lose? Its a dietary supplement and in non-toxic. You could try it for just a week or two and then have blood tests to watch your liver improvement. Look at your AST, ALT, Alkaline Phosphatase and GGT and compare to last tests. If you're not happy then you can stop. But I bet you will be :>)

Take care
Elaine

[kathy]

Hi Elaine,
I had been taking IP6 (2 in the morning and 2 in the evening) on non chemo days and (1 in the morning and 1 in the evening) during Day 1 and 2 of chemo when I was on Taxatere Carboplatin and Herceptin. (per Michael Broffman) After reading your posts, I upped my dosage to the same amount your taking which I started yesterday. I'm also going to get some Wobenzymes today after work and start those also. I pray this will work. Thanks so much for that information Elaine. You are truly an angel.
Hugs,
kathy

[Elaine, UK]

Bless you Kathy. So glad you're trying it. Let us all know what happens over the next few weeks for you. Do you have regular blood tests of the said tests mentioned? Do you have copies of your previous ones by which to compare?

We're all looking forward to hearing from you :>)
I take 20 per day now - 4 in 5 juices throughout the day. Then I do my enemas about an hour after each one. I'm guessing on this dose but the lit I got from Jan de Vries office said 16 per day and they are not toxic and no side affects.

Good luck
Elaine x

[sherry]

I know of someone who had all the chemos you had and had a large liver tumor no longer responding to chemo. She had a specialized type of radiation called novalis and she is doing well. Also, there is another kind of radiation called sirtex and therasphere where they inject radioactive beads in blood vessels in the liver. Good luck!

[jessica]

Hi Kathy-I'm so sorry you're having difficulty finding a cocktail that works for you.Keep the faith, stay strong...it's just around the corner, I know it!
As far as a second opinion, I don't know that you need to go through the formalities of seeing another doc at another facility, etc.You already know so much about this disease and treatment.If you like your current onc and feel confident that s/he is searching for every option for you, clinical trials, as well as all the information that will come your way via these boards, I wouldn't bother.I went up to NYC for a 2nd opinion from Larry Norton-head of breast oncology @Memorial Sloan Kettering-and I didn't learn a thing I didn't already know.
Also, have you heard of a test called a Chemo-Sensitivity Assay?It tests different types of chemo & chemo-combos on biopsied tumor tissue to see which drugs will or will not be effective.
Actually, I understand that it's a better indicator of what will NOT work that what will.Atleast you won't waste time w/combos that may not work for you.I think you'd have to biopsy new sample from the liver lesion, but I don't know for sure.My onc says she uses this test when her pt has already been exposed to number of different combos.
Hope this info is helpful.Hang in there Kathy.I'm keeping you in my prayers, as always.
Jessica

[chand]

Hi Kathy !
I too found to be of having liver met (two tumors in 6 months) and after going through the web sites and the messages I requested my Onc. to try out xeloda. I just started Xelofda on 12th December. One discussion on the msg board of webMD website prompted me to go for this; Topic living with matastatic breast cancer: subject liver met check all the messages concerning this case. In there one is giving another website www.sirtex for liver mets. In addition to Xeloda, I am thinking to take the enzymes that Elaine- UK is suggesting.
Thats all I can give right now.
Hugs.
Chandi.