Here we go again!

Lisa · 01-05-2006, 05:46 PM

Just less than 3 months ago, I had my regular scans. Everything looked good and mets continued to shrink. This week I had the same scans again. My brain looked good, except for continuing white matter that makes me loopy. And L4 on my spine looked good. That's the good news. (Don't let it overwhelm you.)

My liver is now more involved than EVER. I have mets growing on several vertebrae, several ribs, many, many lymph nodes, including those around heart and stomach, and pelvic region. It's like I just spent the past 2 years sitting on a stationary bike, working hard, but going nowhere.

I'll be changing from Gemzar/Herceptin/Zometa tomorrow to Xeloda/Herceptin/Zometa. And I had a STAT MRI of my back today to look at the tumor on L12. We're afraid it's moved too close to the spinal cord, just like Mary Crawford's. I've yet to have any direct pain on it, or had problems walking. If it looks bad, I assume we'll be doing radiation very soon.

I've been doing weekly Gemzar for months now, but it caused low white blood counts. Thus, it was actually done every other week lately. Apparently not enough to hold the cancer in check. And Herceptin doesn't appear to be doing a lot, if any, to help.

As my onc says, there's something about my cancer than it just comes back with a vengence. There's my latest. I hope others have much better starts to the New Year.

Love and light,

Lisa

RhondaH · 01-05-2006, 06:14 PM

I just said a prayer for you. Please take care.

Rhonda Hoffman

Julie2 · 01-05-2006, 06:19 PM

Lisa,

Are you not trying to participate in a clinical trial involving Lapatinib or Avastin? Lapatinib might work for you if your cancer has more her1 than her2. We really want you to reach NED somehow.

Julie

Amy · 01-05-2006, 06:41 PM

Lisa,

Damn it.....so sorry to hear this disheartening news. May God Bless you and help you to endure this challenge!!!
Love, Amy

Barbara H. · 01-05-2006, 06:55 PM

Hi Lisa,
I hate these setbacks. I hope that the next chemo combo will do its job. My thoughts are with you,
Best wishes,
Barbara H.

Tami · 01-05-2006, 06:56 PM

Sending love and light your way and hoping the new regiman knocks it all off the map.

Best
tami

01-05-2006, 06:58 PM

oh Lisa... I'm so sorry. To say this just sucks is so inadequate. But it does, and i am sorry.

I know you are just sick of the whole thing, but from this side of the screen, I have hope that you will show very quick and good long response to the Xeloda. And perhaps over time, you'll be feeling the same.

sending you love, hope and hugs,
patty

saleboat · 01-05-2006, 07:48 PM

Lisa-- words escape me. I just wanted you to know that I read your post, and I send along all the good vibes that I have at my disposal. Jen

StephN · 01-05-2006, 07:57 PM

Zut alors! They say that is a nice way to curse in French!!

Foiled again ... and again taking up arms.

I have a friend in Texas who is taking a couple of things for very stubborn mets. She did well on the Xeloda (she is not HER2 pos) then had to stop it. She is taking Curcumin and a new drug called Zarnestra along with a hormone suppressor. So far she is showing improvement again.

She was the first one at MD Anderson to get the Zarnestra. Dr. Valero is her med onc. Something like this may be what you could look into.
Glad the brain is stable or improved.

Stationary bikes are definitely NOT as much fun as the open trail with the breeze across your face!

Maryanne · 01-05-2006, 08:11 PM

Lisa,

I can't begin to imagine what you are going through right now. Please know you are an inspiration to me and alot of other members here.

You are in my prayers.

Maryanne

Becky · 01-05-2006, 08:24 PM

Lisa

I am thinking of you and I was worried when you hadn't posted in a while. Someone mentioned Avastin and I think you should push,push and push some more for Avastin to be added to the new Xeloda blend. It would be used off label but it is on the market and it has shown promise that it works. An inflammatory Her 2+ woman at my cancer center is on it with your new Xeloda blend and it is working for her. An to boot - it was my crazy doctor who seemed so impotent to with me (who I switched from about 5 months ago) that added the Avastin.

Since it is another monoclonal antibody, it shouldn't add much as far as side effects and you will just deal with what Xeloda's effects are.

Please keep in touch and let us all know how you are doing. You are a gift to all of us.

Love, Becky

al from Canada · 01-05-2006, 08:24 PM

Dear Lisa,
I'm very distressed to hear this SNAFU as you were the very first person to reach-out to me when Linda got very ill. I will never forget that. You were my endoctrination to this support group!

There is no reason for things to spin out of control this fast! Someone mentioned lapatinib, I agree. As well, I would go to the end of the planet to get some avastin. That and probably cisplatin. These are all cutting-edge combinations that aren't tried and true but there is enough small sampling empiracle and antecdotal evidence to suggest that these would be a very effect combos for you.
I also wonder if you could get your hands on some pertuzumab, which is a glorified lapatinib.

I know you have faith in your onc but I really think that things are getting down to the crunch and maybe you should contact U of W or UCLA or MD Anderson, etc and get some other treatment recommendations. I think that there are possibly more effective treatments than those being offered and as you know, I'm not a doctor but.....I think this is a case where you don't leave a life-altering treatment decision in one man's hands.
Please take care and if there is anything you need.....
Al

AlaskaAngel · 01-05-2006, 08:37 PM

Lisa, I hope you can hear all of us because you mean a lot to us. Thank goodness for this place. I throw my vote in with Steph and Al in checking out other major cancer center treatments. Things are moving very fast and places like MD Anderson are leading the way.

AlaskaAngel

anne · 01-05-2006, 09:09 PM

Lisa,

I have been thinking about you lately also. I am sorry to hear this news. I know that you are a very tough lady and somehow there will be some good news ahead for you. Someone posted about GW0517 (or close) to that. That may also be worth trying. My thoughts and prayers are with you and your family.
XOXO,
Anne

michele u · 01-05-2006, 09:13 PM

Lisa, I was thinking of Lapatinib and Avastin also.

Lolly · 01-05-2006, 09:43 PM

Dear Lisa,

I hate to hear this news, but I hope you know I'll be thinking of you A LOT while you come to grips with this set back...I just think with the new year ahead, you'll get ahead of this situation and we're here for you. I too think Avastin is a possibility, and Xeloda can be a very effective drug...I know two at my treatment center on Xeloda/Herceptin who are in remission from lung mets and Inflammatory BC with this combo.
<3 Lolly

jsattaw · 01-05-2006, 09:51 PM

I'll be keeping you in my thoughts and prayers as well -- wish we could do more to support you at this difficult time.

Jill

jener8er · 01-05-2006, 09:58 PM

Add me to the prayer list also - so sorry to hear this news. Will be thinking of you constantly.
Keep fighting,
jen

Nicola · 01-05-2006, 09:59 PM

Lisa,

My thoughts and prayers are with you. I truly pray that a new combo of meds will do the trick. Please talk to whoever you can about Lapatinib, GlaxoSmithKline is the sponsor for a clinical trial with Lapatinib.

Warm Hugs,
Nicola

Ginagce · 01-05-2006, 10:06 PM

My god you're brave! Sending up prayers for you and your journey.

May you draw on the strength that I can feel through your message.

Gina