Well - i am off of tdm1

[IRENE FROM TAMPA]

Hello all -

Just to let you know that I was officially taken off of the TDM1 study because of my elevated Biliruben count . the last one was 2.9. We have tried everything but to no avail. They do not want a failed liver on their charts, and I can understand.

Since I have literally taken just about every combo there is in the last 13 1/2 yrs. - I am thinking to start taking Herceptin as hopefully a maintenance drug. At present or since my last PT scan on 7/15th - I was NED so we are praying this will keep cells at bay until TDMI is approved. Hope it works since I have failed with only Herceptin in the past. We will see. I am trying to stay away from anything drastic for now to try to get my liver counts down.

And lets pray that this drug is approved quickly by F &D.

Everyone take care

[Colleen007]

I'm sorry that the TDM1 didn't work out for you. I see that you were on Navelbine in the past, but have you been on it along with the Herceptin? I have been on this combo for the last 2+ year and there seems to be some synergy when they are taken together (at least for me). This is a very tolerable combination (with my biggest problems being low white counts). I don't know if Navelbine causes liver issues, so you might want to check that out.

[Julie2]

Irene,

I think it is a good opportunity for your body to recuperate.
Wishing you all the best.

Julie

[Mary Anne in TX]

Drat, Irene! I was hoping that you could stay on the TDM1. But, maybe you do need a rest from"stuff" and give your body a break. They can take the TDM1, but they can't take the fight out of the warrior!!! Much love, ma

[Carolyns]

Hi Irene,

I am sorry to hear that you are off of the trial. I wish that there was some kind of expanded access for situations like this. Hopefully Herceptin will work well since you have pushed the beast so far back. I know that I was on Herceptin and Tykerb together and that held me for a while... and I was not anywhere near NED at the time.

You are such an amazing person with an amazing story. I wish I could give you a big hug. I hope and pray that you do really well on Herceptin alone.

Love, Hope, Peace,
Carolyn

[chrisy]

Irene,

Come to think of it... YOU don't want a failed liver on your books, either! Your body does deserve a break, maybe this will help.

Remember also, it has been a long time since anything brought you to NED; perhaps you can get at least a little run with Herceptin as a maintenance drug, or maybe in combination with Tykerb. You really don't have an active "tumor load" to manage right now.

And since DM1 didn't really fail you, you may be able to get benefit from it later - hopefully availability will open up. I don't think you're "done" with DM1 yet.

Lots of love
Chris

[schoonder]

Irene,
I’m not sure if Genentech as yet is totally aware on best method of administering this experimental drug. Company very recently received a patent on T-DM1 that defines this invention and includes possible methods of use.
Below enclosed two excerpts from this patent discuss possibility of starting treatment with toxin loaded antibody, and after some period of time, a follow up with a naked (unconjugated) antibody. With NED, this might become a good maintenance treatment. Here are those excerpts:
“In a preferred embodiment, the treatment is initiated with an anti-ErbB antibody-maytansinoid conjugate, followed by maintenance treatment with an unconjugated or `naked` anti-ErbB antibody. This strategy may eliminate or reduce tumor cells resistant to the naked antibody in the initial round because of the ability of the antibody-DM1 conjugate to effectively kill such tumor cells.”

“In a preferred embodiment, the patients are treated initially with anti-ErbB-maytansinoid conjugate followed by therapy with unconjugated anti-ErbB antibody. Preferably, the anti-ErbB antibody in the conjugate and the unconjugated antibody are the same antibody. For example, treatment could be initiated with weekly injections of HERCEPTIN.RTM.-DM1 at about 0.5-5 mg/kg, preferably at about 1-3 mg/kg for 4-6 weeks, with the option of repeating this treatment. Patients can then be rolled over to conventional HERCEPTIN.RTM. therapy, which typically consists of treatment with a 4 mg/kg initial dose of HERCEPTIN.RTM., followed by weekly treatment with a maintenance dose of 2 mg/kg. However, the 4 mg/kg initial dose may be omitted, with therapy going straight to the 2 mg/kg maintenance dose.”
http://patft.uspto.gov/netacgi/nph-P...&RS=PN/7575748
Hope this gives you more insight into this candidate drug that has been so effective for you.

[Yorkiegirl]

Irene I'm sorry that you were taken off the TDM1. I pray that Herceptin will help you.

[IRENE FROM TAMPA]

Yes, I agree I do really need a break. I have taken chemo in some form or another for the last 13 1/2 yrs.I am surprised I have held out as well as I have

I did suggest maybe combining Tykerb with the Herceptin, but really would like to stay away from a "chemo" if I can hold out. I did do well on the Tykerb/Xeloda studay. I am waiting for my onc. to get back to me so I can begin something as soon as possible.

Thanks all for your responses.

[Mary Jo]

Hi Irene,

I really have nothing more to offer than what the others have said but I did want to say that the pictures of your doggies is simply adorable.

From one dog lover to another..........

Love,

Mary Jo

[Laurel]

Aw, drat, drat, and double drat, Irene! I am just damn sorry you are off the trial. I will pray for a new and totally excellent combo that keeps you NED. Thanks for the update! Please keep us posted.

[ElaineM]

I am sorry to read your news. Herceptin plus Tykerb sounds like a good idea until TDM1 is approved. Meanwhile take good care of yourself and those cute little doggies. You are a real trooper !!!!!!! Keep up the good work.

[jones7676]

Irene,
Sorry to hear your downfall, but I'm hoping for you that the Herceptin keeps you stable and that they find another good "mix" for you. Your treatment history is always an inspiration to me. I'll be thinking of you so please keep us posted.

[chrisy]

Irene,
Don't know if you read schoonder's post - but it describes exactly what you were originally contemplating. Coming off DM1 and maintaining on vanilla herceptin. The comments in the patent may be more directed at first line or adjuvant therapy, but the logic still holds.

Let us know what you decide.

[Joan M]

Irene,

I'm sorry to hear that you're officially out of the trial.

You're really doing great, even though I know you've been through a lot. I hope the drug gets approved soon. If the trial results are good, perhaps it will be fast-tracked by the FDA.

Take a rest and try to concentrate on the good things -- like your two adorable pooches.

Joan

[suzan w]

I agree with Chrisy...last thing anyone needs is a failed liver!!! Love your doggies in the pool...pictures like that make me miss my Florida pool...which was demolished 5+ years ago during Hurricane Charley...xo Suzan

[Jackie07]

Irene,

There's a Bible verse that I could never remember the correct way of saying it. (I'm translating it back from my memory in 'Chinese'.) "Rest, so you can journey further" is the best I can remember.

Taking a break, regroup, and then back to the battle field all refreshed. Remember that we are all behind you.

Sorry to hear you are off this trial. Hoping something better is in store for you.

Randi

[Gerri]

Irene,

I truly admire the courage and strength you have shown through your ups and downs. Maybe TDM1 was the push you needed to get to NED and you will stay there for a long, long time. Please update us along the way - we will all be watching out for your posts.

Much love to you,

[Cathya]

Irene;

I was just reading where post menapausal women who are hormone positive are being given estrogen to resensitize them to arimidex, etc. after years on the drug, apparently with success. I wonder if the reverse would hold hope. I wonder about you trying arimidex?

All the best,

Cathy