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-   -   Trial Trastuzumab-MCC-DM1(One more on this trial) (https://her2support.org/vbulletin/showthread.php?t=31039)

runtolive 02-07-2008 12:42 PM

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

run to live

Lolly 02-07-2008 04:53 PM

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

Kim in CA 02-10-2008 10:19 AM

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

runtolive 02-12-2008 04:41 PM

how is your treatment doing..

lilyecuadorian 02-13-2008 12:56 PM

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

chrisy 02-13-2008 01:54 PM

Lily,

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

Becca 02-16-2008 03:47 PM

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!

chrisy 02-22-2008 12:55 PM

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!

runtolive 02-22-2008 03:10 PM

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..

chrisy 02-22-2008 04:09 PM

Pretreat for herceptin headache?
 
Runtolive - what do you mean by this?

lilyecuadorian 02-22-2008 05:55 PM

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????

chrisy 02-22-2008 06:09 PM

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.

lilyecuadorian 02-22-2008 06:13 PM

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

Barbara H. 02-23-2008 01:57 PM

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.

chrisy 03-01-2008 05:45 PM

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!

lilyecuadorian 03-04-2008 01:36 PM

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

runtolive 03-04-2008 01:45 PM

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.

hermiracles 03-04-2008 02:04 PM

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

lilyecuadorian 03-04-2008 06:46 PM

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

kareneg 03-04-2008 07:00 PM

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.


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