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

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