Crossing My Fingers On Mcc- Dm1 Study

Mykentuckyhome · 02-21-2008, 12:02 PM

I am so stoked as I signed my study consent forms yesterday. I haven't got an a official word yet, as I have to have a muga and a chest xray, which I dont see any problems there. My first infusion is march 13 if all goes well. I wouldn't have even known about this study if it wasn't for all you wonderful girls and guys on this website. I have had three other chemo regimens so this was my chance. My onc hadn't heard of the study and was ready to put me on another chemo and herceptin again. So just wanted to say thanks for all who participate on this site. I'll keep everyone updated. My spirits have soared as another chapter begins.

lilyecuadorian · 02-21-2008, 12:23 PM

I'm wishing you the best ...succes on this T_DM1 trial ...keep updated .....

chrisy · 02-21-2008, 01:31 PM

Yeah baby! You've been workin on this one for a while, glad to hear the finish line (or is it the starting line?) is in sight. You said your onc did not know about this trial - so is your oncologist now participating in the trial or do you have to go somewhere else?

Madge · 02-21-2008, 02:16 PM

My spirits soar with you!! best of luck!!!

runtolive · 02-21-2008, 04:13 PM

ky home.. congrats on getting in the trial... now fight like the dickens to beat this thing once and for-all.. all the studies i see say the response rate to the tras-dm1 is far better and longer than herceptin alone..

good luck..

run to live..

Mykentuckyhome · 02-21-2008, 06:09 PM

Thanks to all replied. I have to go to louisville which is 1 1/2 hours away.Nobody else is on the study and they only have 2 slots. Maybe there was a reason md anderson turned me down, cause texas is a whole lot further. As soon as I find out 100% i'll post it .

chrisy · 02-21-2008, 07:13 PM

Ky home,

sounds like me - I'm so excited to be in this trial that I (almost) don't mind the 150 mile round trip in traffic. I am working on some travel options, because this is a weekly thing although the infusion is every 3 week, there are study related labs and exams weekly. But it will be worth it!

Mykentuckyhome · 02-22-2008, 09:17 AM

hi chrissy, I tried to see if I could have blood work done in my hometown but I understand everything must be regulated and you will have to see the doc anyway, just alot of time. You have it worse than I but I pray for all of us it will be worth it in the end.

runtolive · 02-22-2008, 09:55 AM

i assume you will be treated every 3 weeks.. yes???

Barbara H. · 02-23-2008, 01:48 PM

This is a great trial. The drug has few side effects and has worked wonders for me.
Best wishes,
Barbara H.

runtolive · 02-25-2008, 08:24 AM

found this on the net..

Advances in Breast Cancer
New Molecular “Linker” May Increase Potency of Trastuzumab While Lowering Toxicity
Perhaps one of the biggest breakthroughs in breast cancer treatment over the past decade was the discovery of trastuzumab (Herceptin), a drug that specifically targets HER2-expressing cancer cells, an indication of an aggressive form of breast cancer likely to spread elsewhere in the body. Dosing, however, is often limited because of toxicity. Early phase I trials are underway to study the effect of a “linker” combination of compounds that may deliver trastuzumab more directly into malignant cells with less damage to healthy tissue. “A number of compounds have failed when the 'linker' has become unstable during IV drug delivery while avoiding uptake in normal cells,” Dr. Howard A. Burris III of the Sarah Cannon Research Institute of Nashville, Tennessee said during his presentation. In one small phase I trial, 24 patients aged 35 to 70 were given trastuzumab-DM1 (T-DM1), with a linker molecule (a derivative of maytansine). “The MCC linker molecule has been engineered to provide a stable bond between trastuzumab and DM1 to potentially enhance the therapeutic window of DM1 by minimizing systemic exposure to free DM1 and improving exposure to T-DM1,” Dr. Burris said, calling the antitumor activity observed in patients “quite incredible”, even in some patients with liver and lung metastases.

run to live

Mykentuckyhome · 02-25-2008, 01:49 PM

Thanks for posting that article, finding any positive data makes me feel that I made the right choice. I have to go back to louisville for more tests but im still set for my first transfusion 3-13. I will be on a 21 day cycle. I have been off everything for 12 days, kinda scary. Im going on vaca for 11 days so I hope I can keep my mind off everything. Are all you girls on this study still doing well?

runtolive · 03-05-2008, 01:28 PM

are you still on tract to begin the trastuzumab-dm1 study

run to live

Mykentuckyhome · 03-07-2008, 12:45 PM

hi runtolive, So far im scheduled on the 13th. I am in phoenix right now on vaca-lovin the sun so this was the first time I've logged on for awhile.I was so sorry to read lilly's post. Everything was sent to genetech and they just told me that by the time i got back everything should be set. Im kinda anxious to hear but no news yet. Thanks for thinking about me.

runtolive · 03-24-2008, 03:39 PM

how have u been feeling..

run to live

Mykentuckyhome · 03-25-2008, 08:46 AM

After 3 days of flu like symptoms since my infusion on the 13th everything has been good to go. I had a checkup on the 20th and my blood tests came back normal. I have another blood work appt. on friday and want to see what my liver emzimes are. This drug is known for the liver to spike. In the mean time my study doc said he may have another candidate for the study. I have scans in about 2 - 3 weeks. Thanks for asking, Ill keep posting.

runtolive · 03-25-2008, 01:02 PM

good luck on your next dose ... keep us posted..

run to live

Mykentuckyhome · 04-04-2008, 06:07 AM

I got my second infusion yesterday and asked for benadryl to be left out of my premeds, as I slept for days on my first infusion. So far I have had no side effects this time. My scans are next week so I will post results as soon as I hear back.Keeping my fingers crossed. mykentuckyhome

Mykentuckyhome · 04-23-2008, 03:18 PM

Wishing I could post good news but I cant. Please anyone on the dmi study you all keep thinking positive thoughts. I guess it wasnt in the cards for me as my scans showed alot of progression, so just like that im off the study. I feel like I never really got started. I went back to my old onc and we are doing navelbine. It sounds so nasty. Has anyone had any experience with it? There was a new one called exempra but the side effects were even worse and my onc hadnt used it on anyone. Feeling bummed.

lilyecuadorian · 04-23-2008, 03:56 PM

I felt the same way ...like you ..my doc give navelvine today 48 ml 2 weeks on and one off ...but tomorrow after I felt much better I want to start to see or looking for another opinion ....like my sister recomend ...but I also waiting for more imput from more sister ......T/X fail after 5 weeks (with a lot of site effects ) I never cant take the right dose ...DM1 fail ....too ..but I ask today on my center and they told me that others on the study are doing fine ....so lets wait what other opinions are going to post .......my email address is Lilyschachner@hotmail.com with Love Lily