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???

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

chrisy · 04-24-2008, 03:07 PM

Ky home and Lily,

StephN had had Navelbine + Herceptin for her extensive liver mets, the combo completely cleared them! So the Navelbine is a good drug.

runtolive · 04-24-2008, 07:39 PM

hey chrisy... how you been doing... i guess you are on your 4th or 5th.. treatment..
hope all is well

run to live

Mykentuckyhome · 04-25-2008, 01:47 PM

Thanks for the info crisy, Ill private message her for some other questions I have.

runtolive · 06-10-2008, 06:50 AM

how you been doing.. ky home.. long time no hear from you..

run

Mykentuckyhome · 06-10-2008, 07:07 PM

Runtolive, thanks for asking. I have been on navelbine & hercepton since feb. and my scans are next week. I have been feeling great and never lost my hair. hooray! The combo has been easy except for some minor gi problems. Im hoping for those new mets to be blasted out.

chrisy · 06-10-2008, 08:52 PM

Feeling great is a good sign! Hope your scans show you're getting the results you want.

Glad to hear you are doing well.

MPB · 06-16-2008, 07:03 PM

Hi Chrissy and Lily,

Just wanted to check in and tell you too not give up! The trail has given me NED for the first time in 4 years I am still in shock. Even had to get a copy of the scan to see it in writing. I am so happy to know that the Doctor's are still looking for a cure and that WOMEN like us are willing to give it a try. Thank you for being warrior's as I .

hugs and blessings.

Marsha

chrisy · 06-17-2008, 06:27 PM

Marsha,
Thanks for posting your encouraging words. I've been fighting to stay in this trial and I really needed to hear how well you've done on it. I have tests Friday, so am ramping up the scanxiety...your post helped me a lot!