Recommendation from my 2nd opinion...
 

I'm still making lots of calls & am trying to tie up loose ends so don't have time to go into everything...but I did see Dr. Slamon as you all know by now.

My appt. went well and it was so nice to meet him in person and get a treatment option from someone I can trust! We discussed some things and he immediately wanted me to get into the T-DM1 trial. He seemed very excited about the results of this and said he did not want to see me on chemo of any kind. So I've spent the day trying to see where I can get into this if at all possible. One place just happens to be where I am currently going for treatment...but they have not called me back.

I just called Genentech & she sees no openings near me either. The other places that were mentioned to me are more the 50 miles away...so 100 plus round trip. I am in a hurry to find out if I can get into this because my onc had already given me a loading dose of herceptin which would disqualify me for the T-DMI study if it's been within 21 days of starting. But Dr. Slamon said I'd be fine because I'm not due for my next dose of herceptin till this coming Monday. But I seem to fit the criteria to join this if I can find an opening and I am so praying that I can.

I'm thinking I would do well on this study because I just found out my tumor markers for the 1st time in a year have went down since I did the loading dose of herceptin alone. (So that shows me I do respond to herceptin.) Which means the T-DM1 should work great for me So please keep those fingers crossed because I need to find a study thats still open. I'm update more later...I really need to continue with my calls. But Dr. Slamon is such an awesome onc/human being. :)

Chelee

Re: Recommendation from my 2nd opinion...
 

Thanks for the update Chelee. I have been thinking about you all day.

Keep those fingers dialin'! I know you'll find a trial out there.

Love and a hug

Re: Recommendation from my 2nd opinion...
 

I just called Dr. Slamon's office to talk to his NP. I told her I'm not having any luck in getting calls backs about this study from my cancer center. I've tried all day. Interesting enough she named an oncologist that is part of running this study at my cancer center and it just happens to be MY onc. (Thats sure nice that my onc never mentioned this T-DM1 study as an options for me) She just said I could do herceptin with Navelbine, Taxotere, Tykerb or whatever I wanted...it was up to me.

So anyway Dr. Slamon's NP made some calls and so far it looks like the study is full at my center? So I might have to drive up to UCLA to do this. We left here yesterday at noon and did not get home till 8:30 PM...the traffic was unbelieveable! The things we do once we live in cancerland. Dr. Slamon's NP will be making some calls and get back to me tomorrow...I sure hope this can be worked out.

Chelee

Re: Recommendation from my 2nd opinion...
 

Dear Chelee,
I have been on pins and needles waiting to hear from you.

First thought which came to my mind is everything happens for a reason. Try to see the good in going to UCLA....sure it is a trip - but it's for you! Maybe you can get in touch with an organization that transports....I remember hearing that they assist people with travel arrangements.

What better center to be in than with Dr. Slamon?
I knew you would feel better once you saw him. I know the traffice from South Ca. to Santa Monica is not easy.

Does anyone know when this TDM1 trail will be get past FDA?

So happy for you Chelee...keep us posted.
Hugs,
Jean

Re: Recommendation from my 2nd opinion...
 

I am so glad the appointment went well. Maybe you can call your old onc and see if she will try to pull strings with Genentech to get you into the study where you were being treated. Alternatively, even if you join in another area, maybe you could do the infusions at your local place.

Re: Recommendation from my 2nd opinion...
 

I am so glad you got to meet and speak with Dr. Slamon. His suggestion sounds promising, so I hope it cn be worked out. Keep putting one foot in front of the other and keep knocking on doors and making phone calls. You are doing a good job of advocating for yourself.

Re: Recommendation from my 2nd opinion...
 

Good luck Chelee!!!!

Re: Recommendation from my 2nd opinion...
 

Chelee, my treatment for 3 1/2 years was 3 1/2 hours away in San Antonio! I did the last 2 1/2 years by myself. I'd do it over again in a heart beat! There are some gifts in those trips! Go where you get Great Treatment and Care!!!! Keep dialing! ma

Re: Recommendation from my 2nd opinion...
 

Chelee,

Here are two studies of T-DM1 here in California:

California T-DM1 Studies


Regards
Joe

Re: Recommendation from my 2nd opinion...
 

High 5's you Chelee....sounds very encouraging. I'm in your corner as we all are.

Re: Recommendation from my 2nd opinion...
 

Chelee this is wonderful news. Hope you find something soon!

Re: Recommendation from my 2nd opinion...
 

Chelee ~ Been trying to post!! I keep getting kicked out! I just knew H was doing something good for you! So happy that you saw him and he's trying to get you into this trial.

Much hugs ~ Ruth

Re: Recommendation from my 2nd opinion...
 

Chelee
Soooo glad you have got a good option. Talked to my onc about your appt with Dr Slamon. He said he thought he would want you on T-DM1 as he believes this type of treatment will become the way forward!!
Hang on in there. As already said some journey's have hidden gems
Love Ellie

Re: Recommendation from my 2nd opinion...
 

Keeping everything crossed for you Chelee!

Re: Recommendation from my 2nd opinion...
 

Chelee - This is encouraging news from Dr. Slamon! Keeping fingers crossed for a study opening for you not too far away. Good job! pam

Re: Recommendation from my 2nd opinion...
 

"Does anyone know when this TDM1 trail will be get past FDA?"

Roche is on record to present in Dec at SABCS results from a 3rd line MBC TDM1 phaseII trial and based on positive outcome from this evaluation to request FDA approval for this setting in 2010.

Re: Recommendation from my 2nd opinion...
 

Praying that you find a TDM-1 trial near you asap! So happy to read that your TMs went down after a Herceptin!

hugs,
shobha

Re: Recommendation from my 2nd opinion...
 

Chelee,

I can relate to the commute for a trial. I'd say 50 miles is for wimps because MY commute is 75 miles one way...but you get extra credit for it being LA traffic.

It is a pain, but you can make the most of it. I have been able to work mine so I get the FIRST appointment of the day - which means less likelihood of them being behind schedule. Of course that means I have to leave before dawn but the traffic is better then. I've even learned how to use public transportation which is not much better here than in LA.

Plus, now I know all about SF...oh, and I'm getting the opportunity to get a fabulous therapy that is not yet available.

Not trying to make light of it, believe me the commute did wear on me. But when I balanced the potential benefit of being in the trial against the PITA of getting there, it was the right choice for me.

Also, just a comment on your doctor - it may be she didn't mention the trial because she could not offer it to you as it is full. But still...

Re: Recommendation from my 2nd opinion...
 

Chelee,

Let us know when you find a trial. Glad to hear that Dr. Slamon was encourgaging.

Amelia

Re: Recommendation from my 2nd opinion...
 

Thanks to all for the support I sure appreciate it. However today I'm getting discouraged again. Now I hear the TDM1 trial is NOT at my cancer center because they didn't want to many sites for just the TDM1. They are trying recruit woman for the "Cleopartra" study. The coordinator said if I could just wait a little longer they will have that going soon. (I'm afraid to wait any longer then I already have.) My recurrence has spread every where...I need to be on something soon. I don't know how long this wait is? Plus its a double blind study.

Dr. Slamon was very clear that with my family history and my compromised lungs he wanted me on the TDM1 trial. So that is what I'd hope to get into. And I'm still in a HMO so I don't know if I drive to Santa Monica if everything will be covered? But will gladly do it if it can be arranged. I'll call the HMO and see? I am getting really stressed out...every time I think I have a game plan...something else pops up as I've seen happen to far too many other woman on this board. It's always something. I want my 2nd dose of herceptin Monday if I can't get something lined up right now...especially since with just the loading dose my TM'ers dropped for the 1st time in a year. I want to know I have some protection. I don't know what to do and it's Friday. Friday's are the worse day to get people to call you back. :( Now I don't know what to do about Monday's Herceptin? Do it or not? I have a headache!

Chelee

I nee

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...