Chelee - Clinical Trial at COH - do you qualify?

[Gerri]

http://www.clinicaltrials.gov/ct2/show/NCT00829166

[Chelee]

Hi Gerri, It does look like I do qualify for this one. I just saw my ortho this last Tues. and got the ok to start chemo. I'm due for my Herceptin Monday, & I've been "trying" to let her know I plan on starting chemo this Monday when I come in for my Herceptin. Her and the "COH" onc both had agreed on the Navelbine/Herceptin/Zometa.

However the COH onc did mention to me that they would be having a TDM1 trial...it should be due about now? I checked the locations on the trial and I don't see Duarte listed? But tomorrow I'll make some calls and see about this? I just don't want to many more delays in my trt. It's already been over two months and that concerns me. I know with the trials you have to have the "washout" period of 21 days which that would work for me right now. But then you have to have all the scans, EKG, ECHO, brain MRI, etc. It would be ok if they could get that done in less then a wk for me? Anyway...thanks for posting this...I will check into this tomorrow. Much appreciated. I'm still trying to recuperate from this hip surgery...I'm just beyond misrable...can't imagine doing chemo or anything right now...but what choice do I have.

Chelee

[StephN]

Dear Chelee -
You are one brave soldier in our legion and I know you will find the energy to get on the phone and give this one more whirl.
If you are like me, you want to know you have exhausted the possibilities and are satisfied with the present course of action.

If there IS a trial that is not listed (Chrisy said not all the locations are listed, and you have to dig around to find them all), then you will find out.

[Chelee]

Steph, Actually I don't feel like I have any energy left...but I better find some. I've never felt so drained mentally and emotionally. Every time I think I have a plan some other challege has been thrown at me. I have been set to start chemo 3 or 4 times now and something always stops it. But after being put off so long I do want to make the "right" decision/choice for myself. I've been so worried about my cancer spreading in all this down time.

Chrisy is so right about the trial locations....they aren't all listed...you really do have to do some digging around. I found that out after Dr. Slamon told me about the TDM1 trial he wanted me in. The two locations he told me about weren't mentioned on the clinical trial website. My biggest problem right now is I feel like I have to do something now. You reply & support will give me that extra boost I need to make the call. Thanks Steph!

Chelee

[Ellie F]

Go for it Chelee!
I understand how drained you are and frustrated. If you trust Dr Slamon then pursuing his recommendation is the right thing for you to do.
I have just read your other post about the biopsy results.Do you need him to review these results to see if his original recommendation still applies given the change in status of the mets? Just a thought.
Ellie

[Chelee]

Ellie, That is a very good question, and one I am very curious about myself. That's why I posted that here tonight in hopes someone could tell me something? That is a big change. Dr. Slamon said the TDM1 trial & the Tykerb/Herceptin combo would be good for me since I was "So Her2 pos". How did I go from Her2/Neu, 3+++ to Her2 negative (1+)? Er 15%...to Er 60 %?

I don't think I can get Dr. Slamon to review my bisopy report at this point. I was only a consult and paid cash to see him. Hopefully my onc and the 2nd opinion onc I saw at City of Hope will discuss my recent biopsy report before I start any new treatment. I figured the bisopy report would still show me Her2/Neu 3+++...I don't know what to think at this point about anything.

Chelee

[Gerri]

Chelee,

Sorry, I posted that in a rush yesterday and should have given you more info. Here is the link to the COH Clinical Trial page that lists the trial http://clinicaltrials.coh.org/specific_result.aspx it is the third one down with Dr. Solmo as the PI - I believe he is the head of the Breast Cancer department. The study is also at Breastlink in Long Beach (probably closer to you) with Dr. Link as the PI. I know all of this is overwhelming to you with all you have going on. I hope you are able to look into this (if interested) and see if the trial is right for you.

I am so sorry to hear that you are in so much pain and are recovering slower than you hoped. Please know that I am thinking of you and wishing you better days ahead.

Big hug to you,