count me in...and out
 

Hi everyone, I was waiting on results to post and just trying to live a relatively normal life. I am sorry for some of you and recurrences and struggles with all of this crazy stuff. And happy for those who are truckin' along okay.

I had bad news yesterday. It looks like herceptin dm1 is not working. I had may second CT since starting in June and it showed a fair amount of progression in the liver. The one prior showed stability. My tumor markers are reflective of the progression as well. I am so mad and scared. I can't believe it stopped working already. I wonder if it just was never the drug for me or if the cancer is just too aggressive and nothing will work well.

My specialist wants to see the CT with his own eyes to make sure, but we are pretty sure, really, that it is what it is. He said he would call by friday and he will be calling and talking to my local onc too. I don't know what the plan will be. I hope there is one.

I am wondering about Tykerb/Herceptin/Avastin or some combination thereof. Otherwise another trial? I don't know.

I am very sad and feel a little hopeless and mad as h-e-double bamboo shoots. I think the world of you all and would love a refresher on your successful options and opinions for treatment. With so much love, Joy

Joy - I am sorry to hear that the trial isn't getting you continued good results~

I too am awaiting results from my PET... and crossing my fingers.

If it shows any progression in the body, we plan to add Herceptin back in with my Tykerb/Xeloda...

I know so many folks have had great results with Navalbine and liver mets, have you and your doc talked about that in combo with something else?

Keep us posted!

Joy,

I am so sorry to hear your news. A few post back there was a thread on Rexin-G. Ask your Onc about this new drug to see if there is a trial for it.

I know I am probably pulling at strings, but have your tried Chrisy's liver de-tox recipe? It really helped her get her liver counts down.

Keep on fighting to find the drug that works for you.

Joy and hutchibk, my thougts and prayers are with you.

Dang, Joy.

I was getting ready to pm you as I thought it would be about time for more information. I was so hopeful that the DM1 would work for you, as of course were you. But as you know, everyone is different and when one therapy fails, the next one may very well succeed. That is of course especially the case with the "experimental" therapies.

I know you and your team will come up with a plan for the next step.

You had in the past been doing research into RFA and the Theraspheres. Are either of these still options you could pursue? Lily is being treated with the spheres. I don't know if she has much info on response yet.

I know you're feeling sad and maybe a little defeated. You've got every right to feel that way and if you want to cry or scream or throw things, go ahead and do it. I just wish I could hug you right now.

But although you may be weary, you are NOT yet defeated!

Much much love and many prayers are whirling through the universe...to you right now.

Love
Chris

S*it, s*it...Joy I am so sorry...argh...sending you strength and energy to formulate your plan of attack, Hang on girl..we love you and wont let anything take the JOY out of JOY!
Marcia

Hi Joy,

I can't offer any advice on tx options but do want to say that I'm so sorry this trial isn't working for you. Damn!!! I wish I could help...OH HOW I WISH I COULD.......

Love to you Joy...

Mary Jo

Hi Joy,

Sorry to hear the news. Have you tried RFA or cyberknife?

Joy I'm sorry I don't have any advice for you but am sorry to hear this and hope your onc has a new plan of attack that'll work for you.

Sorry to hear your bad news, but I am sure your doctors must be working on something new for you to try. I know you are down, but stay strong.

Joy, I remember your name and your beautiful picture, from when I used to come to this fantastic site in the midst of my 2006-7 bc experience. I'm very sorry to hear about this. It must be exhausting for you to be on this rollercoaster of hopes raised and hopes dashed.

I have no opinions or help to offer, as it's out of my experience, other than to say that i'm thinking of you and sending a hug from across the ocean.

Love

Caroline

Joy
 

I feel bad and mad for you also. I wish I could say something very profound, but words escape me. All I can say is that we're rooting for you and your new plan of attack. Be well.

Joy, I'm sorry to hear about your results. I was just thinking of you yesterday. Please know that my thoughts and prayers are with you. Keep looking for a treatment that will work for you. I wish I could help. Love, Bill

count me in and out
 

I was very sorry to read your news. Don't give up. Keep on truckin". Maybe you can do a little research or talk to some other docs and see if they have suggetions you could present to your oncologist. One doc doesn't know everything about everything. All docs have had different experiences with patients and may have special interests in different areas than your oncologist. You might want to write down the suggestions of other docs and ask your oncologist about them.

Joy, I am sorry to hear of your progression, but tomorrow the sun will shine and your onc. and his team will have a plan for you.

all the best
caya

Joy,

So sorry to hear of your progression, but there MUST be another treatment just waiting for you to find it. I will keep you and your team in my thoughts and prayers, praying for a quick new answer.

Joy,

I'm sorry that it seems your liver mets are progressing on the trial. I understand how you feel. Last year I had a wedge resection for a solitary pulmonary nodule and I had a "big" idea that I would get something like five years out of it but I got only one year. It was a local recurrence, and I had radiofrequency ablation in mid August. I'm due for my first follow-up scan next week.

I've been only on Herceptin since recurring but will probably be adding Xeloda even if the scan is clear.

Do you have only liver mets? Did you every think of doing RFA? It's done for primary and secondary liver cancer much more frequently than in the lung, and I think in some cases there are really good results for tumors under 3.5 cms.

If anything it could lighten the tumor load which would help make chemo more effective.

It's just a suggestion. I'll keep praying that you will find a good solution.

Joan

Joy, that SUCKS! Keep your chin up and keep fighting. We're here for you.

Love,
Beth

Joy,

I don't have any advice for you, but I am so sorry that you are going through this! BC is just one unfair b*tch.

I will be thinking of you and checking your posts.

Take care,
Krista

Joy, Oh Crap!!
Wish I could offer you some advice, but I do want you to know I feel for you and I am with you all the way.
****hugs to you*****
We will all help you get through this together.
Lots of love.,
Maryanne