meant to post this here not articles of interest

Joy · 08-25-2006, 09:15 AM

Hi everyone, I haven't posted in a long time and just haven't felt like I had much to contribute lately. I've been trying to deal with things in my own circle of support. But right now I am feeling so sad and discouraged and worried. I know I have options and I'm grateful, but they tend to run out don't they?

After a couple of years of good response to hormonal/herceptin treatment, my liver mets grew and a couple of new ones showed up. So I did 8 months of weekly taxol/carbo/herc/zometa(1 x/ month). It took a while to get any response, then we had good response, but certainly not NED and then I plateaued and had quick onset of neuropathy so we figured no more of that. I started on Megace 5 weeks ago knowing that it can take 8 weeks to see if it will work. Meanwhile my CA 27.29(which works for me) had during tax/carb plateaued in the mid-80's. Then we quit and it went to 101, I had just started the Megace then. The CA from 8/15, I just found out is 156 and the onc scheduled a CT yesterday as a reaction to the numbers. In addition to the marker rising, the draw from 8/15 showed a slighlty elevated ALT and AST. My chem/metabolic panels have always been perfect.

I was already seeing my specialist in Denver this afternoon, so that is good timing, I guess and I'll see my local onc on Monday.

I know the CT will not be good and everytime the phone rings my stomach hurts-I know most of you have experienced this.

Unless my docs have some great new groovy non-chemo option, I'm pretty sure it will be chemo for a 4th time. Probably xeloda/navelbine or one at a time, maybe, I don't know. But what if I just start blasting through protocols and run out of options faster than I thought?

Next year will be 5 years since my stage IV diagnosis and I really thought I'd go beyond that, but now I'm wondering.

My kids are 7 and 10 and I want so many years with them, but do I have to start being real and preparing myself for not many years with them?

Just having a rough day, thanks for reading.

Joy

Barbara H. · 08-25-2006, 09:28 AM

Hi Joy,
Navelbine is an excellent drug together with Herceptin for both liver and bone mets. There are some women who are stage 4 at my treatment center who have been on it for years and it keeps them going, They also are allowed breaks from it from time to time. It thins the hair but most people do not lose it. It depletes blood counts. I feel a little achy the first few days after I get it, but well enough to continue my full time teaching job with 3rd graders and take graduate courses. Most people tolerate this drug really well. I really hope this drug works for you. You need to be there for your children.
Best wishes,
Barbara H.

R.B. · 08-25-2006, 10:08 AM

You have probably already looked at the omega three six / diet posts.

If not fats and diet are often reported to reduce risk profiles for a number of health conditions including cancer. The Greek diet post is a bit of a read but it does underline the potential of diet as a risk reduction strategy.

Fats are fundamantal to human metabolism, and have been reported to do some powerful things. A trial comparing rats on a diet which balanced the omega threes and sixes, and on with a ratio of about 30:1 omega six to three showed gene expression changes of up to a factor of ten, including a doubling of HER 2, liver weights that were nearly halved for the balanced n3:n6 group, and fatty acid oxidation was up by 150-300% for the balanced group.

Diet is reported to change gene expression. That is how fundamental it is to the bodies operation.

Omega three and particularly the long chain omega three DHA is reported in a number of trials as showing synergies with treatments. There are a number of links on this site.

Please do talk to you advisors about any dietary change.

RB

Christine · 08-25-2006, 10:42 AM

The fact that you are now progressing makes us wonder if you may now need other forms of chemo. Barb H can be a positive chemo for you , but also there is more chemo's like TYKERB-pills, that is presently being released to the Onc's who apply for this drug for compassionate use. FDA will be approving it we think before the end of the yr. It wouldnt hurt to ask the Onc about it. Also Lupro injection to block hormone seems to be a good ER-blocker every 3-4 months if needed,according to your markers. Also, HERserum test can be another way for the onc to monitor the effectiveness of the treatments. It may be at high end now, but the her2 serum test is another tool for the onc to check your progress on other treatments. Ask ???'s Get valid answers from your Onc until you are satisfied.
Warm Hugs
Christine

RhondaH · 08-25-2006, 10:46 AM

and will keep you in my thoughts and prayers. Take care and God bless.

Rhonda

KathyH · 08-25-2006, 10:49 AM

Dear Friend,

I have no medical advice to offer. I just wanted to say I'm sorry you're having a hard time right now. My children are 7, 9, and 12. Blessedly, it doesn't sound like anyone has begun to think that you have exhausted options. Since that appears to be the case, I will pray that you can live as if that day is far, far out in the future (as we certainly have great reason to believe) or that it just NEVER comes. Every day brings new hope in this fight. You are loved and prayed for.

KathyH