darnit

Joy · 08-28-2006, 09:14 AM

Well, I had a bit of a shock at my local oncs office today. My liver mets have grown significantly since finishing taxol/carbo in July. I can't believe how big they are. I start Navelbine with weekly herceptin tomorrow. I don't mind starting the chemo tomorrow, I'm just really freaked out at how aggressive this thing is. What if it doesn't work? Is it still possible to beat these things back down again? The mets are almost as big as they were when I was re-diagnosed 4 years ago and it was bad.

I just restocked supplements yesterday and really focused on liver oriented things. Any advice? Things I can do to augment? Any encouraging studies? I'm just reeling right now.

tousled1 · 08-28-2006, 09:42 AM

Yes, it's possible to beat the mets down again. You did it before and you will do it again. You're in my thoughts and prayers.

RhondaH · 08-28-2006, 10:04 AM

unfortunately, I have no advise, but I do have prayers. Take care and God bless.

Rhonda

Becky · 08-28-2006, 10:05 AM

Dear Joy

I am glad to see you are back online but sorry that the last chemo regime didn't work for you. Navelbine is a good drug. See if your onc will add Avastin to the mix. Another thing is Celebrex as a Cox 2 inhibitor (I saw in your list of supplements you do take an herbal mix that acts as a Cox 2 inhibitor) but maybe the drug will do you some good.

Vitamin D (at least 1000 IU per day via supplements and/or food) can be very helpful. Is your antihormonal working? Maybe a change to Faslodex might be warranted now unless your onc is absolutely certain your antihormonal is working.

Have your onc start the process or at least get the paperwork to get Tykerb as compassionate use. This way, if you need it, you are ready to go. The info on how to do this is posted as a sticky from Joe.

I will keep thinking and let you know everything else I come up with.

Hugs to you

Becky

Cathya · 08-28-2006, 10:37 AM

Joy;

Becky just questioned whether your anti-hormone is working. This is a good idea as it doesn't work for everyone I understand. It reminded me that Becky told me previously that your onc could run your estradiol levels to check possibility this out. I will copy her entire comment so you can take it with you to your onc.

"When I went to ASCO I saw a post about a study on Stage 4 women with bone mets only. The researcher used only an antihormonal on these women and measured response. This paper indicated that when estradiol levels went up over 20 (I will see if I have a copy of this paper to include the units of measure), this was an indication that the AI wasn't working.

I asked what she did with these women after that - she commented on Faslodex or Tamoxifen (she indicated tamox is fine for Her2+ women as long as they are also on Herceptin).

So... I come back from ASCO and have my onc run estradiol when they do the cancer marker tests. Result comes back as less than 30. So, I call my onc and ask for the exact number. Well, Quest and Labcorp's lowest reading is less than 30 (which he says is a good number - I am on Arimidex too). So, apparently, these normal labs can't measure lower (I went to a seminar that said in a postmenopausal woman, an AI can take the estradiol level to 1 or 2). So, according to a normal lab, my estradiol level is as low as they can measure it.

Ask your onc about this. Estradiol levels can be measured. Maybe the lab you use has a more sensitive test than the ones we use. Apparently, in a research setting, they can use expensive, sensitive tests."

We'll all keep looking for other ideas. Hang in there.

Cathy

CLTann · 08-28-2006, 02:23 PM

I would add ganoderma pills as a herbal treatment. There is no harm to take these mushroom derived extracts. Ganoderma seems to have a particular effect on liver cancers.

Ann

StephN · 08-28-2006, 06:59 PM

But, being a survivor of aggressive breast cancer mets to my liver, I do know that Milk Thistle (Standardized) seemed to have helped me. I did take some mushrooms but feel the best way is eating fresh ones. Shiitake are supposed to be excellent with anticancer properties. I ate a lot of them along with my chemos and still do eat them. I am able to get organically grown at a couple of local stores. There are many ways to fix them.

I also take Lions Mane Mushroom supplement to help alleviate "foggy thinking and memory" due to so much treatment. It seems to help.

Really feel bad for your situation with the tumors gaining some ground, but there surely is a combination that will work against them. I like some of Becky's thoughts. Tumors like the liver as there is such a good blood supply. A drug like Avastin that interrupts the blood supply to tumors might be a good idea.

Esther · 08-29-2006, 09:36 AM

I would also research some of the different breast cancer diets to find one that you think will work for you. The liver will be taxed trying to heal as well as trying to process the chemo treatments, so your diet can help lighten the liver's work load.

When I first began Navelbine for extensive liver mets, I felt the sickest as the liver mets were dying off and my body was processing the dead cancer cells. Navelbine worked great for me, hope you have the same results.

eric · 08-29-2006, 06:36 PM

Joy,

I'm really sorry to hear about your new challenge. Everyones advice seems great so I'm sending caring and positive thoughts your way.
Eric