Out of GW572016 Trial anyone know of anyting new?

[Martha]

Hi there all, I'm sorry to say that I am out of the GW572016 trial that is so very promising. The CT I had last week showed increase in tumor size and it was enough of an increase to pull me out of the study. They feel the study drug is no longer helping.

I am Stage IV IBC HER2+, 35 yrs. old, DX @ 33 in May 2003, easier to say what drugs I haven't done because I've done just about all of them. Only two I haven't done are Navelbine and Gemzar.

I don't know what the doctors will do next, I meet with them next Wed.

Does anyone on here know of anyone in my position that has actually survived this wicked diagnosis. I keep going to sleep hoping I'll wake from this terrible nightmare and be able to raise my four children but; I wake and I'm still in the nightmare.

If anyone can shine the light at the end of the tunnel so that I may see it, please do. I hate to say I'm losing hope but I can fell it slipping away.

Blessings to all, Martha

[mamacze]

Oh Martha,
It sounds like you are just at the end of your rope and you have just about had it. You feel like you are running out of options; I am so sorry that you had to drop out of the GW57etc trial.
How old are your kids? I too have 4 and when I was first diagnosed; in fact, even now, I think of them nonstop, night and day, what will happen to them if something happens to me? I know that up all night, nightmare worry; it is awful. It is at times like that that all I can do is get on my knees and pray; even if it is to hand God the burden of the worry to get me through the night.
Now, enough said of worries...here is a big fat light to shine your way.....Navelbine is what put me into NED, and if it can do it for me; perhaps it can do the same for you. Are you eating a healthy diet? Lots of fresh veggies, sprouts on your salads; minimal dairy and animal products...
Finally, you must read the post that Joe put up with a sticky; about registering with Veritas and learning about clinical trials that are near you...register; perhaps you will find one more? Another suggestiion might be to call Dr. Mary Nora Dsis in Seattle and just talk over your situation with her; she may have an idea.
You keep this big fat light on and don't give up ... for yourself or for your kids.
Loads of love and light,
Kim from CT

[mamacze]

Martha,
One more thing, see the clinical trial post by dr. Devon; she works with the Seattle group of docs lead by Dr. Disis; they are great; there is a phone number you can call if you have questions...
Love Kim From CT

[al from Canada]

Hi Martha,

Yes life really sucks sometimes but don't give-up hope yet. Many upon many survivors have been in your shoes and are still posting on the board today. Unless some medical miracle happens this will follow you around forever. The goal is to attempt to hit NED and failing that, keep managing the active disease. Every month that you watch your children grow is another month some brillant researcher has hit a BC jack-pot, a milestone, a postive clinical trial result, an opportunity.

Think of all the things you teaching your little ones through this ordeal, the life lessons, the courage, commitement......... A year ago our 17 year old wrote Linda just a heart wrenching letter about how she is the bravest person in the world and that failure is not an option. A positive attitude and staying focused on the loved ones have been proven to extend life.

The last comment is: do a search on our board for suppliments and start a complimentary regime. A few: olive oil (oleic acid), IP6, vitamin B-6, Maitake Mushrooms, CO-Q10, curcumin (if you're not on chemo.............

Good luck and you should move this tread to the main board for a wider response.

Al

[Martha]

Thank you ladies for the positive light. Mamacze, can you tell me a little more about what kind of cancer you have and what stage it was when you were put on the Navelbine? I got my first infusion today, just got back from Indy. They said there was a 15% chance of it slowing things down, not the best but at least it's hope.

[Shell]

Hi Martha-

I am sorry to hear you are out of the trial - I am in it currently, but without the lapatinib - which arm did you get? I think we've corresponded before, but don't recall all of your chemos. I had progression with herceptin (I had herceptin first w/ navelbine for 3 months, and then reoccurrence to lymph nodes. I then had axillary dissection, followed by taxotere and herceptin, but in March of 2005, I felt another reoccurrence to the same area, but scans also showed spread to chest and lungs. Thus the clinical trial.) I don't seem to respond to herceptin - are you in that subset also?

Kim is right - navelbine could be a big help. I've also heard good things about gemzar...

I have your same fears, but honesstly the kindness and caring of others has made things so much easier for me. Our two girls are 8 and 10, and I take so much solace in being able to deal with their issues instead of my own. I need to take Al's advice, and get back on the stick about a better diet, too....it's on my list!

Please keep us posted...

Kind regards,
Shell

[Unregistered]

where were you, in what trial? did you take g w alone and how much? when you say meet with drs, does that mean clinical trial drs. or your own oncol.? seems that g w works better with other chemos, but cant do that in most trials? xeloda is being used by people after g w failures. where is your cancer?

dont give up.