Trastuzumab-MCC-DM1 trial
 

Well, here I am staring at my first dose of this new drug! And not a moment too soon, as my scans show things were definitely heating up. Time to slap those suckers down.

Looks like there are new lesions in the liver, as well as some activity in the nodes which worries me. Like the rest of it doesn't...

Anyway, you are all witness to the very first IV drip as it is happening! Wish me luck on this new trial!

well, I'm already paused because it stings! Anyone else have this problem?

Chrisy,
Best of luck with the new drug. I wish this one takes you to NED.

Julie

Congrats on getting into the new trial!!
I knew you could do it.

Normally the infusion stings ONLY because the access was not done correctly and the drug is leaking into the tissues. I hope they just will reaccess you and all will be well.

Never had any of all the drugs I took actually sting as they were infused.

Chrisy,

You sure have been on my mind lately. I know all too well what it feels like to know those nasty "C" cells are running amok in your body and anxiously waiting to start an armed offensive. I am keeping you in my prayers and sending you some very positive thoughts.

You Go Girl! Kim

first infusion play-by-play
 

OK, I'm bored, except for every 15 minutes when they have to take my vitals. So far I am still breathing and, except for the time when I had just gotten back from running to the bathroom, my B/P is nice and low. Some change from the Avastin days, plus I think taking the train as I did this morning is a LOT less stressful even tho I had to get up while it was still dark.

The stinging has stopped, after running more saline with the infusion and putting a warm pack on the infusion site for a few minutes. Had me a bit worried because I REALLY want this drug to work, and It probably won't work as well if I'm only looking at it and not actually getting it in my veins.

My hubby is coming to sit with me for this first infusion, since I wasn't sure how I would feel and plus, it's a really long day (90 min infusion followed by 90 minutes of observation then a blood draw 2 1/2 hours after that!). He should be here soon, so I can stop boring you with endless drivel about my treatment!

Somebody stop me!!!!!!
I just took my own temperature and oxygen saturation rate, but the time they let me out of here I'll be accessing my own veins for infusion!

congrats on the first dose.. your are doing every 3 weeks .. correct.. 3.6mg/kg

the good news is the little buggers got nowhere to hide now.. cancer-away.. be gone..

run to live..

great,.....finally start ...good luck ...and my wishes are the best ...and I know you are going to respond to this treament ...great like us ...Barb, marsha ....me and now you ....!!!

hey chrisy .. how is day 2 on the road to NED.... hope u feel good..

run to live

Hi run to live,

I was fine during the infusion and throughout the 4 hour observation period, but by the time I got home I was feverish and very tired. The doctor advised ibuprofen which helped. Today I again have flu-like symptoms which may indeed be the flu since it is definitely going around. So I feel a little punk, but it might not be the t-m-d.

Hi Chrisy, there definitely IS something going around. I had a "stomach flu" thing the last few days; stomach issues,very tired, slightly feverish, headachey. So hoping you feel better soon, and that your next infusion is a piece-o-cake!

How often are the infusions?

<3 Lolly

lolly.. i belive chrisy is supposed to be on the every 3 week treatment.. at ucsf.

run to live

You first infusion!
 

Hi Chrisy,
I felt exacty as you did with the first infusion. I was at the Dana Farber all day and then I had went home for an hour and had to go back to school at 6:00 do do a Curriculum Night presentation for my parents. I got though it and also felt like I had the flu the next day. Eventually, you will not have these symptoms. The drug is very tolerable. I wish you all the best.
Barbara H.

Hey Barbara, thanks!

Now at least I know I'm not contagious!

Chrisy I do have the same symptoms and now on my # 5 infusion weeks ago I have some nausea ....but no big deal to have to take medicine

Update on response and treatment #2 and #3
 

I've had some info posted on other threads, thought I'd better put it here where it "belongs"!

As reported earlier, my first treatment was pretty rough, but my 2nd and 3rd treatments were much easier than the initial one.

I am pretty wiped out the evening of treatment, and with #2 I had a low grade fever and headache for a couple of days. After treatment #3 I was still wiped that evening but did not have any aches or fever at all.

Still haven't seen my liver enzymes come down significantly - they are living at between 2-3x ULN for AST, ALT and Alk Phos. At least they haven't continued to go up, but it would be nice to get back closer to normal.

Platelets crash on day 8 but still rebound the next 2 weeks, all as expected.

Seems like all the trials for this one are filling up. I'm on the 3 week trial, and was told it is almost full.

As for response, I had scans after 5 weeks and the fast growing lesions in my liver are significantly less metabolically active, which is good, and some of the "new" ones that had shown up between Jan 2 and Jan 31 are no longer visible on the March 19 scan. All in all, this is the right direction for things to be going, especially as I was off all treatment for nearly a month!

Good news Chrisy! You keep on rollin' and thanks for letting us know the good news. Love, Bill

lily.. are u still receiving the tras-dm1 or did your doctor stop that medication..

Update on scan after cycle 4
 

Well, boys and girls...
This drug is still working for me! My scan last week shows shrinkage of the "measurable" lesion and another big drop in metabolic activity - the cancer now lights up less than the normal liver tissue. No new things popping up, good news.

Chrisy,

What wonderful news! I think ofyouofter and pray this treatment works wonders for you!

Love always

great ...keeping up like that