Re: Recommendation from my 2nd opinion...
 

Chelee,

Looks like there are many options there. Hope you'll get the one that's best for you.

Here in Texas, we pretty much have to drive at least an hour to get to anywhere. Just be careful of the traffic and drive defensively. Do you have a 'driver' accompany you?

Hang in there. I'm sending my prayers.

Jackie07

Re: Recommendation from my 2nd opinion...
 

Chelee, I sent you a PM with my thoughts...

Re: Recommendation from my 2nd opinion...
 

Chelee,

Don't worry about the HMO. 'They should pay' (as my neurosurgeon had told us) for the treatment. Call the Vice President of your insurance company that's in charge of the special contract. Get youself a lawyer just in case. My brain surgery in 1990 was done outside of the network even though my then family doctor thought the network neurosurgeons were 'also good'. I came out of 23-hour surgery without any visible deficit because we had insisted on the neurosugeon in town that was recommended by my neurologist.

My then boss told the insurance company that 'Her [my] doctor is talking about lawsuit' while she's the one that had obtained a lawyer (someone who had just won the 'Texas Young Lawyers Award' the previous year) to work on my case pro bono. Eventually we did not proceed with the lawsuit (though my ex-boss still thought I should have,) but we did learn how to deal with the insurance company.

[2 years ago we had a leaking roof in one of the bed rooms and our insurance agent only offered to repair 'half' of our roof; because of our previous experience with the medical insurance company, my husband was able to get our contractor to talk to the estimator of the insurance company and got us a brand new roof. Another proof to us that the insurance companies are just going to try everything they could to pay as little as possible - even when they know they should pay...]

Re: Recommendation from my 2nd opinion...
 

Chelee, in the last decade Roche has made fortunes from Herceptin. One would think that Genentech is kind of indebted to the inventor of this fantastic drug and would be willing to lean over backward to accommodate Dr. Slamon if at all possible. If the good doctor found that best way for you to proceed with your therapy is to get enrolled into a TDM1 trial, then it's hard to believe that Genentech wouldn't welcome this opportunity to see if doctor's recommendation could be implemented.
Maybe contacting the company directly might present you with some more options. Goodluck.

Re: Recommendation from my 2nd opinion...
 

I'm on information overload and just want to get the ball rolling with something. I really want to do this TDM1 trial...but depending on who you talk to you hear different stories. But someone on this board did clear something up for me that even Dr. Slamon's office didn't mention. There are about seven different trials with TDM1. One place I called said it was a double blind study...I am not interested in any studies where I might get a placebo.
But the study from Dr. Slamon's office shows two arms & it says its Herceptin-MCC-DM1 vs. Herceptin, & Taxotere. So you are getting a drug either way. The only thing is Dr. Slamon made it sound like I would be getting the TDM1 no matter what. I even called his NP and she understood it the same way. He said he did not want me on chemo...and Taxotere is a taxane which is chemo...not that I have to tell any of you that. Ha!

My onc will be back Monday so I'll call her about all this. I also talked to another onc at my center & he said even though I had the loading dose of herceptin & I'm due for my 2nd one this Monday...I could wait as late as Thursday to take it & it wouldn't hurt anything. Plus I still have Dr. Mortimer at COH Thursday.

Schoonder I did call Genentech today asking where I could find an open study. But I might try again Monday and present my situation and see if someone can pull some strings to get me in this study. Dr. Slamon really seemed to think this was the best way for me to go and I trust him. I have so much to get worked out and I'm just mentally and emotionally exhausted right now. This is all so time consuming...I just want to start hitting this cancer with something.

Chelee

Re: Recommendation from my 2nd opinion...
 

Chelee all my fingers and toes are crossed as are my doggies paws that you can get into this trial.

Sending out lot's of Cyber hug's to you.

Re: Recommendation from my 2nd opinion...
 

Chelee,

I am so glad to hear that you have a plan of action, but I understand your frustration in trying to get it going. I can't imagine how tired you must be. Dealing with a recurrence is bad enough, you shouldn't have to work so hard to get the treatment you need.

I wish you the best and pray that things start falling into place for you soon. Rest this weekend and start fresh on Monday. Please keep us updated as much you can.

Re: Recommendation from my 2nd opinion...
 

Chelee,

This is great news about the T-DM1 trial, and it seems that your appointment with Dr. Slamon went really well.

Everything will work out.

Joan

Re: Recommendation from my 2nd opinion...
 

Chelee, I don't know what part of So CA you are located, but why don't you try calling my oncologist, Dr. James Waisman at Breastlink to see if he can help direct you. He is located in Manhattan Beach as well as Long Beach. Number is 310 539-2300. He might be able to help you.
Keeping my fingers crossed for you. At least we all know you are headed in the right direction.
Maryanne

Re: Recommendation from my 2nd opinion...
 

Good luck! I'll keep my fingers (and toes) crossed for you to get into the trial!!! GO GIRL!

Re: Recommendation from my 2nd opinion...
 

hope you find somewhere nearby but if not, maybe you could start on the further away place and then transfer??? also maybe there is some HER2 member living nearby. how often are the treatments? and for how long?
good luck. luck seems on your side.
hugs and love
sarah

Re: Recommendation from my 2nd opinion...
 

Chelee,

I just got back from my trip and am getting up to date on your news.

I wish you didn't have to go through all this just to get an effective treatment.

Try and get all the answers you need early Monday and I'll be adding you to my prayers.

'lizbeth

Re: Recommendation from my 2nd opinion...
 

Oh Chelee...I am so sorry! How incredibly frustrating for you. Please keep us posted on what you decide. I don't know what the answer is, but Dr. Slamon seems to have a solid reputation and you seem to trust him immensely, so I think I would go with my gut. Good luck and keep us posted.

Re: Recommendation from my 2nd opinion...
 

Thanks for all the support and ideas...I really appreciate it. I will start early Monday making calls...starting with my onc to tell her Dr. Slamon wants me on TDM1 trial & see if she has any feedback thats helpful? I also want to make sure she knows that the herceptin loading dose alone dropped my TM'ers down to 37....that was a fast drop in only 2 wks time.

I just know I got to get onto some kind of active trt before much more time goes by.

Harrie I did see Breastlink was running a TDM1 study but it was a double blind also. Like Chrisy mentioned...there is at least 7 different TDM1 trials. Slamon wanted me on "just" the TDM1...that was very clear. But if my onc knows nothing I will certainly give them a call. Thanks to all of you for your kind words & prayers...I need them.

Chelee

Re: Recommendation from my 2nd opinion...
 

Even if Breastlink is running the dbl blind, Dr. W may be helpful in directing you to just the TMD1. He is very well-informed and extremely compassinate.
That is basically what happened to me in So Ca. I was looking for answers and the place where I went to inquire ended up directing me to Dr. Pegram. Ended up in the right spot in a round about way.

Re: Recommendation from my 2nd opinion...
 

Hi Harrie, You ended up with Dr. Pegram...doesn't get too much better then that. :) You certainly landed in all the right places young lady. Extremely compassinate...now those are two words that are to be unknown to my onc. lol I will give Breastlink a call in the morning and see what they say? It's all about getting the right person...maybe that will be the place to direct me to the study I need. I'm willing to call any place at this point. I'll probably call Slamons one more time tomorrow too and see if he can't do something? Wish me luck.

Chelee

Re: Recommendation from my 2nd opinion...
 

I spent the entire day on the phone again trying to locate a TDM1 trial I could do. It's not looking good...long story. So I just got off the phone and the other onc that works with Dr. Slamon suggested said I could try Herceptin, Tykerb & Zometa if I can't get into the TDM1 study. I'll see what the COH onc says tomorrow. So many decisions....

Chelee

Re: Recommendation from my 2nd opinion...
 

Chelee, Can you get into the trial in Idaho? My husband is going to try to get me there ASAP. We could go together. It is the closest one he could find to our California locations. I also have an old friend up there that maybe we could stay with. I don't know anyhting about it yet, but Cap is going to work on it tomorrow. I know there are Angel Flights that go there also.
Sending you my love, sweet sister,
Vickie

Re: Recommendation from my 2nd opinion...
 

Hi Chelee,

Just keep trying girl, you are a warrior and I'm hopeful something will come your way.

all the best
caya

Re: Recommendation from my 2nd opinion...
 

Vickie, that is such an awesome suggestion you offered to Chelee. SO nice of you. From one sister to another,....thank you...