Lily and Marsha,

Congratulations to both of you! Sounds like this trial is just the magic bullet that you both needed. Please keep us posted.

do u know the other lady in the trial.. or how she is doing..

run to live ..

BARB.. YOU OUT THERE.. how you been doing..

Run to olive I think the other lady is stage IV bone mets and she is doing good and she have one side effects that I didn't get it and is nausea I will ask again next cycle ..i let you know

Hello Lily and all the ladies on this trial ~ Trastuzumab-MCC-DM1. Im glad it seems to be going well for you.

Would someone mind explaining the basics of the trial to me or providing a link where I can read about it? Not that I could participate being in Australia - but I would just like to understand more.

BIG prayers and hope everyone continues to get great results!
Blessings
Hermiracles

Hermiracles Please refer to this study by its ClinicalTrials.gov identifier with this number : NCT00509769 hope you are continued doing good with herceptin !!!

how are you doing with your treatment.. keep fighting..

Hi Lily! Thanks for that link - it was a big help.

Can you tell me is the Trastuzumab-MCC-DM1 different from the usual Herceptin? - just wondering. Hope you dont mind all the questions.

All the best with your trial.

Your kids are gorgeous!
Blessings
Hermiracles

miracles... tras-dm1 has a toxin attached to the HERCEPTIN..
the herceptin delivers the toxin to the cancer and then the toxin attempts to kill the cancer..
lily and a few others are in two different dosing regimens with TRASTUZUMAB-DM1. DNA has a once a week trial and a once every 3 weeks trial..
it appears their cancer is not progressing. this is awesome news...hopefully they are able to keep us updated on their progress as they defeat this disease..

run to live..


patients like lily, barb, and marsha are true warriors in our fight against this horrible disease. they have been fighting for a long time.. we can only hope they stay strong and positive in their fight..

Lily,

How are you doing?

Hi
 

Hi ladies!

Sorry I have been out of the loop, my computer went in for a check up and needed a new' motherbroad" so that was two weeks.... Have miss catching up with all of you. Had my 4th infusion that went so so... I keep gettin the chills and then the sweats??? anyone else?? I have next scan first week in Feb. so will see if all is still going well!!! How is Lily and Barb doing with this??? Went and saw the grandbabies thispast weekend my how fast they grow! Okay enough about me take care!


hugs!
Marsha

well I got my results ...brain clear and everything else clear except the one on my liver ( 2cm) and the half (2.3 cm) still the same ..Doc thinking that is stable he said is a good news ...I really was waiting for a clear results ..but he said that still 13 treament to go ...(just got 4) monday I will get my #5 and Marsha YES I got some sweats too and some running eye and nose ...fatigue but only the first week ...second week, better and 3th week, normal ...Marsha your results are going to be OK too ...or why not clear .....

I am so happy for you Lily and stable is great news!!!!!!!!!!

lily.. i spoke with a friend about your trial.. she was asking for info about it at her docs office.. this oncs office said they had done a handful of patients with trastuzumab-dm1 and their patients loved it... in general terms she said all their patients were doing great and highly recommend it if your eligible..

In case someone need in NC here is my Doc inf.
Steve Limentani
1100 S Tryon St, suite 400
Charlotte, NC 28203
phone # is :704-446-9046
and the email address is : margot.church@carolinashealthcare.org
ask for Margoth Church a very nice nurse ....
I hope this inf.really help !!!!

info on tras-dm1
 

When the Herceptin antibody binds to a tumor cell expressing HER-2, the Herceptin/DM1 complex is internalized. The intracellular environment favors freeing of the DM1 from the antibody, makes the DM1 active, and kills the cell," Dr. Schwall said.
Three Breast Cancer Models
The conjugate was tested in three models. The first was a line of MCF7-HER2 human breast cancer cells engineered to express high levels of HER-2 and transplanted into nude mice. The conjugate caused complete tumor regression in all mice treated, while trastuzumab alone only slowed tumor growth. This experiment was repeated several times, with 9 to 10 mice per group. "With the conjugate, all of the tumors just disappeared," Dr. Schwall said.
The second model was nude mice transplanted with MDA-MB-361 breast tumor cells, which naturally express high levels of HER-2. As in the first experiment, the conjugate induced complete tumor regression in all 10 mice treated, while unconjugated trastuzumab only slowed tumor growth.
The third model was mammary tumors from MMTV-HER-2 transgenic mice transplanted into the mammary fat pads of 10 nontransgenic nude mice. The transplanted tumors grew aggressively and were allowed to reach 100 mm³ before treatment was initiated. "For reasons we don’t understand, Herceptin is not very effective against these tumors, even though they express high levels of HER-2," Dr. Schwall said.
When the mice were treated with the trastuzumab/DM1 conjugate, tumors regressed by more than 90% in all mice within 20 days. This effect was seen only in tumors overexpressing HER-2. "The tumors shrink and stay small for 60 to 70 days then start to grow back. When we treated them again, they responded again at similar levels," he said.
Maximal efficacy in this model was seen at a DM1 dose of 300 µg/kg, which corresponds to about 18 mg/kg of the conjugate, given once a week for 5 consecutive weeks. "These results show that Herceptin/DM1 has better activity than Herceptin alone in both Herceptin-responsive and Herceptin-resistant breast tumor models," Dr. Schwall said.

how has your treatment been going..
hope all is well..

run

Update
 

Well ladies I had my scan ALL CLEAR NOT ONE LITTLE TUMOR!!!!!! I know how good God has been to me! Thank God for new drugs!
Hope all is well just touching base.

hugs and peace

great ....is fantastic ...great news !!!!!

What great news!!! Congrats and enjoy!!!

marsha.. u had 6 small tumors a few months ago.. and now they are gone..
awesome.. u keep fighting girl..

run to live

Marsha and Lily, this is fantastic news! I'm so glad for you and also want to thank you for moving this drug through the pipeline and eventually to us!

<3 Lolly

Dear Marsha and Lily,

Just wanted to say how happy I am for the two of you (and all of us) as this is such exciting news. I'm cheering for you both and so happy you were able to get into this trial. We are getting closer to that cure all the time!

Hugs to you both, Kim

how is your treatment doing..

Dear Runtolive .... I will got my ct scan on march 3 I will post it ...hopelly is good ...any prayers are very very welcome ...!!!

Lily,

I'll be holding you in my thoughts and expecting great results on your March 3 scan!

Interesting to follow the progress you gals are making in this trial. Now Chrisy too. I will be following this, thinking of you all and praying for you. Keep up your hard and courageous work!

Lily,
Thanks for posting your experience in such detail. I got a call yesterday from my NP re my week2 labs - I had the same thing happen with my liver enzymes way up from what is my "normal". I asked if I should be freaking out, and she said "Oh no, I did that for both of us...". She then ran to show the doctor who felt this was a reaction to the drug, and not unexpected. My platelets also crashed, which I had expected after looking at the phase I trial data.

So of course, after being told NOT to freak out, I spent the rest of the evening doing just that. Right up until I just read that you had the same thing happen....so thanks for posting that info!

this is starting to get exciting.. all you girls on the same trial. the docs are learning how to better give this drug every day... just make sure u pretreat for the herceptin headaches.. i am so glad ....ky home ..... was able to get on this study based on the info she learned from you girls.. this is awesome.. keep fighting...

run to live..

Pretreat for herceptin headache?
 

Runtolive - what do you mean by this?

Chrisy ...your are very welcome ...and the third treatment was my liver enzymes worse but after the second week come back normal....just water and no medicine ...,,,is always the first week ...the same thing with platelet's ...........I don't have big headache yet.............but in the trial papers that I sign ....was all this about the liver enzyme and some more side effects .....I guessing that the DM1 is going to your liver ?????? and work aroud your liver ????? that is what we want it no????

Hi Lily,
I reread the study consent form and it does mention the platelets as well as "signs of liver problems" might be seen in lab results. I also have studied the poster presentation from San Antonio which has a very clear graph of the platelets plunging on day8 then recovering quickly. Not much specifically on the liver enzymes, tho.

I think the elevated liver enzymes is because your liver is working very hard to process this drug - and maybe also causing agitation for us because that is also a tumor location. I like to imagine that it is torturing those cancer cells.

I think what we WANT is for there to be optimum quantity of the drug available to kill cancer cells, AND for our systems to otherwise stay healthy. Your strategy of drinking lots of water seems wise.

lol ..............I dream with this "torturing those cancer cells and kill them too with DM1"

liver enzymes
 

Hi Chrisy,
Don't worry about the elevated liver enzymes. This is a known side effect of the drug. If they get too high your oncologist will just hold the drug for a treatment. That might not be necessary for you if you are receiving the drug every three weeks. I'm sure you will find the drug very effective. I started in September and feel great. I also feel fortunate to be on it because it will probably be another two years before it is approved.
Best wishes,
Barbara H.

Lily - good luck on your scans tommorrow
 

Just wanted to know I will be thinking of you and holding you in my prayers. Let us know when you find out!

I want to thanks for all the prayers first ...especially Kareneg, Chrissy, Kim from DC, Bill ,Pinkgirl ,Eric and for all my sisters ....I just got a call from my Doc nurse and she said that I's till progressing ...stable on brain, heart is OK ....everything else is clear but not my liver ......after this MCC-DM1 trail fail ??? do this mean that I'm super resistant to herceptin ???? tomorrow I'll have appoint w/my doctor at 8.30 am ...I want to ask him about Esther option about cyberknife ? do anybody have another ideas....please I need them tonight ....please send to my email address or post it ...in this post ...(lilyschachner@hotmail.com) and I don't want this to UN-encouragement to anybody especially ....Marsha, Chrissy, Kim and Barbara ....and Eric with Carin too
thanks in advance for all your replays

lily, did the nurse say how many tumors, how big, how much did each one grow..

i think its great that the cancer is gone from everywhere but the liver.. dont let it get u down.. keep fighting it..

run to live.

Dear Lily - thinking of you Sis - you hang in there - it will be interesting to hear what the oncologist's take on the results are - sometimes its better than what we think its going to be!

It's so hard not to worry eh? Hope the other folks have some more ideas about how the trial is going for you - I dont really understand a lot - just wish the best for you.

You are one beautiful - inspiring lady! Hang tough sis!
Lots of love
Blessings
Hermiracles

Runtolive ...I always (so far) my mets was and still on my liver ....the rest was clear before the trial so ....do you think I'm super resistant to herceptin now? tomorrow I will have how big are the tumors ??? thanks for replay

Dear Lily,

I just wanted to tell you that whatever happens tomorrow at the doctors you are going to be ok. Please let me and all of us know how you make out tomorrow. Please know I love you and I am praying for you.