Calling all DM1 trial participants
 

Unfortunately it appears that I have progress on the TYKERB/XELODA/Herceptin combo ;(. My scans from yesterday show the return of my liver met (2cm) and another suspicious hypo-dense area that is 2-3mm. I am going to try and get into the DM1- Trial and would love to hear from Ireene, Chrisy, Kim in DC, and anyone else who is giving this super herceptin a test drive.

as always thanks for all of you being around when I panic.

trial
 

I have been on the T-DM1 trial since September 97 and and remained stable. My last CEA test was .9. I could very well be NED, but the bone mets that I have are not considered to be measurable disease. This trial has been easy for me to tolerate and I hope that it continues to work for me. It has caused some minor inflammation in my lungs, and if that increases, I will unfortunately have to discontinue the trial. As I stated, this drug works for me, and it would be a huge dissapointment to give it up. I hope that you are accepted into this trial.
Best regards,
Barbara H.

Hi KK1
 

I began on the DM1 trial in June of last year with about 15 tumors showing - to my neck, liver, spine and the ones I had previously.

After about 3 -4 scans, they did not detect anymore tumors. I was amazed and so was my onc. and the radiologist who did the scan. I could not believe it myself.

My CEA at last drawing had come down form over 1000 to 6. I am due to scan again in a couple of weeks and we will see what that shows. I am afraid to be too excited but so far I have gotten 6 months out of this trial.

I wish you much luck getting into this trial and let us know what happens.

Hi Irene;

thanks for responding, unfortunately they called today to tell me I am not eligible because I have never had Anthracycline :(. I not sure what we are going to do next. Maybe another liver resection, uggh, or maybe abraxane or taxotere again. I hate this waiting part.

Did your Onc say you could have it? I did not have enough herceptin in the metastatic setting and I had to get an extra cycle to qualify.

Kim

I was also wondering that...although its quite a different story adding a cycle of Adriamycin vs. one of herceptin.

I wonder if you could get a waiver or something based on the recent findings that anthracyclines only benefit a small subset of patients and/or that the "new" standard of care in your situation is treatment with taxanes anyway. You've still had multiple chemos with the Xeloda.

They are obviously looking for a heavily pretreated population - and it's always nice to feel like you're not part of that crowd. But it can be really frustrating trying to thread the needle on trial eligibility - you feel like you're always just a bit too much...or too little for whatever they're looking for.

In studies they do have to decide on and then stick with the protocol, but sometimes there is a little bit of "wiggle" room; it might be worth pushing back and seeing if they can find a way.

Good luck on your next step, be it DM1 or something else.

chris

Dear KK1,

Firstly I am so very sorry to read your post about the recurrence and sorry that you cannot have access to the trial.

keep us posted as to what is being done. Also i wanted to say that laser treatment may be a possible option: you go home on the evening and feel just fine a week later and was shown to work as well (in recurrence term) that liver surgery and no scars. Feel free to contact me if you want more info on procedure.

Lots of love to you and your wonderful family, you are a very strong lady.