Topic: TDM1 Trials: Anyone? Anyone?

Sep 4, 2009 03:23 PM vhqh wrote:

After my last scans showed some progression, my onc mentioned the possibility of going on TDM1 on a compassionate use basis - not on a trial!

Sep 11, 2009 12:36 PM tooyoungtohavebc wrote:

So I went to eye doc again last week and she made me come back again this week. My eyes are so dry that now my corneas are being affected and my vision could be damaged permanently. I can no longer wear my contacts and my vision has gotten worse too. So not looking good. I notified my onc and he said he will get back to me with the plan....right when this stuff seemed to be shrinking the tumors a bit...blahhhhh!

Sep 11, 2009 03:28 PM tooyoungtohavebc wrote:

Thanks Lisa! For right now my eye doc wants me to try artificial tears to see if they help enough and if I am allowed to continue the trial. Next step may be restasis and she also recommended I go see a doctor at kaiser since I now have a medical condition in my eyes. more doctors more doctors more doctors:(

Sep 21, 2009 09:59 AM Bmarie wrote:

Wow, Cathy, I am so happy you are doing well on this!  Gives me hope and can't be soon enough that anyone can get it! Maybe this is the cure for HER2 positives! :)!

Oct 21, 2009 03:12 AM nmiller wrote:

This is my first post!  I just had my second treatment of TDM1 and Pertuzamab last Tuesday.  I had a good bit of nasua for the first couple of days after treatment, but have felt normal since.  I also had a strange itchy skin rash on my legs (has anyone else had this?).  I have scans next Friday - we are praying this is working!!  I would love to hear an update of how others are doing.  Tooyoungtohavebc - how are you? (I also feel "too young" sometimes - diagnosed at 26 - but hoping that these new drugs really will let us treat this as a chronic illness for MANY years to come!!). 

Oct 22, 2009 02:40 PM LuAnnH wrote:

this is awesome, glad to hear you are still in the trial tooyoung!  And nmiller, that is exciting hearing about the perzubatab.  I hope you keep us posted how that works.  I've heard some really good stuff about that drug and am glad to see people are showing up that are trying the drug!

Dec 13, 2009 03:07 AM barleyparrish wrote:

Hi,

I am new to this site and just heard about the TDM1 Trials.  For those of you on it, how is it going?  Also, what about those ladies on Tykerb and Herceptin?  I hadn't heard of that combination before.

Thank you!

Dec 26, 2009 02:13 PM sdisilvestri wrote:

Hello, I am new to this site and have really enjoyed reading about those of you currently participating in T-DM1 trials.  I just began a Phase II trial for women who have not received any prior chemotherapy treatment and so far it seems to be going very well.  I had my first infusion of T-DM1 (alone, not in combination with anything) on 12/14 and my next will be on 1/4.  I won't be scanned until early Feb but can already note a huge difference in the primary breast tumor so I'm really excited.  Side effects haven't been awful...basically I slept the whole first week after the treatment and had a little nausea and flu like symptoms (chills, aches) but nothing too bad.  I feel pretty normal this week.  And, really, feeling run down for a week is a small price to pay for the kind of change I am feeling in my breast!

Good luck to all of you who are also participating in trials and I hope to post some positive scan results in a few weeks.

Dec 28, 2009 11:27 AM vickib wrote:

That is great news!! Congrats!

Dec 29, 2009 08:30 AM nmiller wrote:

Catgo - amazing news!!  Congratulations!!!

I am currently on a T-DM1 and Pertuzamab trial.  I had my second set of scans (I have them every 6 weeks) a week before Christmas and everything looked a little better again.  I feel pretty tired and a little nauseous for 4 to 5 days after treatment, but then I feel completely normal the rest of the time.  So this treatment seems like a pretty good option (other than missing too much work - and I actually really love my job). The only other side effect I have had is a strange rash that I get on my legs and stomach.  Has anyone else gotten this?  It normally comes on at night and goes away after I take an antihistamine and put on some cortozone cream. 

I certainly love hearing everyone else's great success stories.  I hope TDM1 continues to work for me and for LOTS of other women. 

All my best!

Jan 30, 2010 12:37 AM nmiller wrote:

Congratulations sdisilvestri!!  That is AMAZING news!!!  I am so glad that the T-DM1 is working so well for you!!!  Hopefully the PET/CT will just confirm what you are seeing in the primary tumor!  Hope you are taking some time to celebrate :)

Sep 15, 2011 03:04 AM KLynn wrote:

Hi ladies...I mentioned I was looking into the TDM trial on another posting and said I would keep everyone updated...Well I signed the papers today, still have to go for the screening, the scans and stuff, but it looks very promising of getting into this trial...From what I understand this one just opened either yesterday or today....It's a phase III two arm open label trial....2/3 of the patients get the drug, and 1/3 get the drug of choice that your doc chooses if you aren't in the 2/3's....this way never leaving you without any drugs....they are taking about 795 women/men into the trial...I'm the first in my doctors office to be getting it...and his office is one of 6 sites listed...with this trial you had to have recieved at least two prior regimens of her-2 directed therapy...I will know and my doctor will know if I am getting the drug..I have to wait 21 days since my last Herceptin which I have, but I also have to be off of my tykerb at least 14 days, which I wasn't ..so I won't start until the scans are done and my body is clear of tykerb.....They also have to send out one of my slides from back in 2000, to Germany....part of the trial....Thank God they still have it at the hospital....In NY they have to hold it for 10 yrs. (I think)...but here in NJ it's only 7 yrs.. and my doc was thinking they may have to try and get another sample...which I hate to think of how that would even happen, since I have no breast tissue, and I guess they would have had to go into the lungs....with not having any tumors of any size, and only all of this tiny tiny spots, I don't know how that would even have happened...Glad to not be dealing with that....Sooooo..as of now, I'm enrolled, and in the screening process but it's looking very good....keeping my fingers crossed to be in the 2/3rds for sure...As I know anything more I will post....I have always felt the information I get here from all the wonderful ladies has been my biggest source of true information, and I find it so helpful in so many ways...I figure if I'm entering or trying something new, I love to pass on the info too...I've been on Herceptin for 5 1/2 years this time around, and it has become a life line for me, even with the progression I get, I still believe the Herceptin has kept my bc under control the best that anything ever could have...It does scare me a bit to let it go right now, and I have hated the Tykerb since I started it...not going to miss it one bit...If I do get put into the 1/3 of the trial, where my doctor selects the drugs, then I will be back on my Herceptin, the Tykerb, and he will add another agent, I think he said Havalan, sp..?? I haven't had that drug yet...I'm hoping to not have to go there yet...thinking of you ladies always, and trying find a break for us all somewhere in these fields of drugs....KLynn...

Sep 15, 2011 03:47 AM KLynn wrote:

hey Kim...I'm looking at the paper and the trial protocol no # is: TDM4997 g/BO25734..It was started in June of 2011, but just opened this week...hope this helps..if you need any other info just ask...hugs Klynn...

Sep 27, 2011 05:20 AM twinsmom96 wrote:

I was put in the clinical trial unfortunately In my study one of the arms was standard care and that is the one I got so if you can get the TDM-1 hope you can get it good luck.

Sep 27, 2011 07:44 AM scuttlers wrote:

Interesting NEWS:

www.express.co.uk/posts/view/2...

www.cnbc.com/id/44654885