TDM1 Trial
 

Anyone on the above clinical trial. What can one expect?.

Are there different type of drugs but the trial name is the same for all of them?

I'm confused. I'm looking into Petrazumubam...have been on Herceptin for almos 7 years.... I want to know I have other options.

Thanks a lot.

Love,

Adriana

Re: TDM1 Trial
 

adriana,

there are a number of different trials with TDM1, as a single agent, in combination with other things, and some with crossover to adding pertuzumab. They are seeing good results as single agent (these trials have been going on longer, so there is more data) and I hear that early indications are favorable in other combinations as well.

It is confusing that there are SO MANY TDM1 trials, but I think they are going for the most data, and the best chance of getting this drug to market. Maybe even by the end of the year! So there are going to be options.

I've been on TDM1 studies for a little over 2 years with great success. The cancer didn't like it much at all - and although it is a more toxic (for me) agent for side effects than plain herceptin, it is very very tolerable. It will be a great option. I'm also very interested in pertuzumab (which Roche/Genentech is also putting in every trial they can think of, it seems) as it seems to interfere with the HEr2/Her3 activity which is thought to be very important.

So it's confusing, but I think in a good way - lots of options in the pipeline!
Chrisy

Re: TDM1 Trial
 

Hi,

Overall what can you tell me about the trial.

How often did you receive the drug
Side effects
Lenght of study
How are you doing now
Are you NED?

I received a phone call from Genentech, unfortunately there is nothing in my area--San Diego- but I'm willing to travel, actually I called this morning CHapel Hill, NC -- I don't mind...whatever it takes. There is a total of 19 locations throughout the world, imagine that!

Nice if I could travel and stay in Barcelona for a year!! (just dreaming)

Adriana

Re: TDM1 Trial
 

Adriana,

I went to the Genetech/Roche site and didn't get much info out of it.

Thought that Joe had mentioned not long ago (or I've seen it somewhere) that T-DM1 is going to be widely available end of the year.

Here are some phone numbers that you may already have:

Media Contact: Charlotte Arnold (650) 467-7694
Investor Contact: Kathee Littrell (650) 225-1034
Advocacy Contact: Kristin Reed (650) 467-9831

How did the 'Cyberknife' discussion go? Would it be a possibility to use it to hold off things until T-DM1 becomes available?

Re: TDM1 Trial
 

The link Joe provided in January has all the sites listed at the end:

http://clinicaltrials.gov/ct2/show/s...ow_locs=Y#locn

One of the location in Texas is my hospital right here in town. I've left a message for the coordinator (it's past 5 pm) and I will send her an e-mail later as well. If it's available here, you are welcome to stay in our home for the treatment.

I'll post it here tomorrow as soon as I find out if it is still available.

Re: TDM1 Trial
 

Adriana
Many of the TDM-1 trials like the link posted here exclude anyone who has been on Tykerb (Lapatinib) or Xeloda (Capcitebine). There are lots of sites here in Illinois, but I am excluded since I was on both drugs. I am hoping it will be approved soon....there are so many of us that need this drug.
Right now I am on Herceptin and Avastin, and I will know in a week when i get scanned again if it is working.

Re: TDM1 Trial
 

I just went to the website of the hospital in town. The 'link' is no longer 'hot'. I'd assume it has stopped recruiting new participants.

Contact the Chamber of Commerce in Barcelona. You might be able to find a temporary housing/job teaching English or some sort while getting treatment.

Re: TDM1 Trial
 

Thank you all for your response.

If the drug is available in December, I will wait, for there is a short time now....

I just get so scared--not for me--my husband- who will take care of him? He can't speak, write, walk, nothing.

Sometimes I'm consumed thinking and worrying, but somehow I always find the courage to keep on going and staying strong through it all...

I believe having this disease has made me stronger, God wanted me to be a carrier of this disease so experimental trials will take place for the benefit of others. Sounds crazy? I know...I believe...

Thanks again. I'm grateful to have known everyone of you.

Love,

Adriana

Cyberknife
 

Jackie,

I had a consultation outside Kaiser, the doctor is an expert in this area---oncology/radiology.

She believes I'm not doing too bad to have it done at this time, and recommended to stick to chemo for the moment. She did recommends Stereothatic RX? and totally opposed to RFA. For the moment I will have a Chest Scan Monday 3-22, the next day I will be seeing my onc. Upon reading the scan results we will discuss the next step. He's thinking Gemzar. Me.. I'm thinking joining a clinical trial, but I received a response from Sheila and she said that since I've been on Tykerb and Xeloda I will not qualify for the trial.

I called Chapel Hill, NC., hope to hear from them next week. I'm willing to travel anywhere at this point. I want to have a break for a long time, am tired of these short term "cure" chemos.

Love,

Adriana

Re: TDM1 Trial
 

Adriana,

Cyber knife is a type of stereotactic radiosurgery. I would think it will be much more powerful than Radio Frequency Ablation.

The Gamma Knife radiosurgey (same principle as Cyber Knife) I had had 9 years ago for the three tumors inside of my brain has kept them at bay pretty well - though they started to grow a little bit the past year. Even though breast cancer grows much faster than the type of brain tumor I have, I think stereotactic radiosurgery has its merit for having very little side effect, thus a safe procedure.

Several members on the Board have used Gemzar off and on. I sure would try it while waiting for T-DM1 and/or whatever cure is available in the near future.

Hugs,

Re: Cyberknife
 

Hi Adrana,

Have you researched "Nanoknife"? I read about it here not long ago. I believe it is offered in Miami and Little Rock Ark. I have no idea if your situation warrants it, but maybe it is worth a "google"?

Missy

Re: TDM1 Trial
 

Dear Adriana -
Sending you good wishes and prayers for a scan today that shows "stable" - so that you get a little longer break for now.

I know how hard it is to think of anyone else taking care of your husband. That stroke really hit him hard, but your loving care has brought him back to some degree.

Your onc may have another idea for a trial as there are some other new ones out there.

Re: TDM1 Trial
 

Hi,
I am on the TDM-1 trial and have received both Tykerb and Xeloda. Good luck.
kathy T

Re: TDM1 Trial
 

I have a friend who just started the TDMl trial in
Indiannapolis. She has had three treatments and
after two the CT scan showed a reduction of 40
percent in lung nodules.
patb