Fingers Crossed for T-DM1 Trial it's time
 

Hi All,

Well it appears the Navelbine has run it's course. I just returned from the Dr.s and I am crying as it is time for a change. The drugs seem to be lasting me between 4 - 6 months before progression. I keep hoping that they will buy me more time and I get so disappointed when they begin to fail....I feel like I am failing and then the fear and sadness creep in.

Okay, the sunny side of me will become hopeful in a few hours once I absorb my new reality and then I will need input from the T-DM1 trial participants. Please keep you fingers crossed that I can get in. If I do I must drive about an hour to the treatment center...not far compared to some but my normal treatment center is just blocks away and I work full time.

Edit - I just learned that most likely I will need to have taken Xeloda and failed first. I have not taken that drug in a metastatic setting. Only 5 FU along 20 years ago in the CAF combo and I don't think that counts.

T-DM1 participants if I get in how often is treatment? What are the side effects? Will I lose my hair? How soon will I scan after I begin? I have only had the 3-week dose of Herceptin 1 time and then switched to weekly. Please share any other thoughts or tips.

Thanks for listening and your support. I couldn't do this without you!

Love, Carolyn

Dear Carolyn,

You are in my prayers. I can tell from your post that you are a fighter and you spirit of optimism always wins! I pray the fears will subside soon and you will be filled with hope and get into the T-DM1 trial!

Love always,
shobha

Dear Carolyn,

Sometimes it's hard to interpret the inclusion/exclusion rules for these studies. Seems like you always have a little too much of A or not quite enough B...Hope you find you are able to qualify.

I've been on DM1 for 1 year - it is a different trial than the one you are going for, so I can't comment on what the protocol will be for that one. The one I'm in was treatment every 3 weeks, (now every 4 for me due to liver tox - but that's another story).

The killer part for me - I also have a long commute (1 1/2 hours vs 10 minutes to my local!) - was that the trial I am in also requires weekly labs and office visits. Also scans every 2 cycles. So it's a lot of travel time. Maybe yours would be different.

As far as side effects, it is not a hair challenging regimen (yay!). I feel a bit flu-like on day 3 or 4 after treatment, and also have occasional and very mild neuropathy and nosebleed similar to with other chemos but less bothersome. DM1 affects platelets in nearly everyone, but they typically rebound quickly. Elevated liver enzymes are also common and for most people not too problematic; for me it has been a bigger issue and although I have no symptoms it has impacted my treatment schedule.

So, overall it is not as "easy" as plain vanilla herceptin...and this is especially true for the cancer, which is the most important part. When it works, it is a great drug and reports out of San Antonio last month on my trial showed really strong response rates even in heavily pretreated patients.

I hope you are able to get your hands on this weapon.

Chris

Hi Shobha, Thank you for your prayers.

Chrisy, Thank you for all of the details and I hope that I can get in now but I don't think I will. If not, I hope that the drug is available soon or that there is still an open trial when I qualify. I am looking into Heat Shock Protein and trying to gather information on the treatment and trial. All of this just started today so I am in "mad" search of the next "plan".

Carolyn

Carolyn,

I hope you get in the trial. I will be praying for you.

Amelia

Thanks to everyone for their well wishes and hope.

I did not qualify for the trial based on the fact that I have not had Xeloda. So, tomorrow or the day after (depending on the postal delivery of my meds) I start with Xeloda and Tykerb. I am hopeful that this combo will work and that I will get a long ride out of it. Then I am also hopeful that I will be able to join my sisters who are showing great promise in the DM1 trial. It may be that based upon the early success of this new trial (maybe) they will have a compassionate use program by then. I guess it is just one step at a time...

On another note, I shared all of my carefully crafted notes on chemo / trial options with my doctor and she seemed quite impressed. She was going to share them with her colleagues to show them just how educated patients are becoming. I used the thoughts / experiences of many here combined with notes from the "Breast Cancer Watch Digest Newsletter". Anyway, I feel a calm resolve that I am going in the right direction and that gives me hope and a degree of peace (the degree that you get when you have mets and your current treatment is failing and you have crossed your fingers and toes that the next choice you make will work).

Thanks for your support! Carolyn

Carolyn,

I am hopeful that this combo will do the trick. And if it helps you get to the trial then that is a good thing too. I am excited for you to get on this new combo.

HUgs,
Lexi