Starting a new clinical trial
 

Hi All,

Well Caryn's scans came back confirming growth (40% increase) after only 3 weeks on and one week off of the low dose adriamyacin. We met with Hudis at Sloan and Caryn is going into one of the HSP90 heat shock protein trials. Protocol requires that she be off treatment for 3 weeks so she should be starting in 2-3 weeks. This makes me nervous due to the recent growth and agressive nature of these cells but there doesnt seem to be anything we can do about that. The Dr's minimize that but it does concern me since it can potentially effect options down the road (cyberknife,etc). Our NJ doc said we'll keep a close eye and if the HSP doesn't seem to be working early then he will quickly consider targeted radiation although he prefers a systematic approach at this point and believes we will still have this option down the road. I hope he's right but more importantly, I hope we won't even need it!! Bring on NED. Some interesting insight from Hudis for anyone considering an HSP trial. He is very high on 17AAG although she's not eligible. She's going on a new drug from a different company called CNF2024. It's in pill form but she will have to travel into NY 4 days the first week, and less each week after. I'll keep you informed.

Love to all,
Eric

Hi Eric,
This trial sounds exciting and I hope it works for Caryn. Thank you for keeping us informed.
Best regards,
Barbara H.

Eric, it's alwasy nerve-wracking waiting to start new treatments; I will keep you both in my thoughts as you wait for Caryn to start the trial drug.

<3 Lolly

I wish you the best results Carin and Eric ...love Lily

Thanks guys. I'm nervous about Caryn's situation but optomistic about this treatment. I pray that it works great for her and becomes an exciting new options for everyone else.

Love,
Eric

I also pray that this new treatment works for Caryn. You are both in my thoughts and prayers. All my best my two friends and may this new plan of attack kick butt!

best, best, best to you both
 

Eric,

All the best with the new treatment. Caryn is in my thoughts.

Julie

Eric, you and Caryn will be in my prayers for each day to get shorter & easier as you approach the day you begin this exciting new trial! why not pick something special to do each day that blesses you both as you wait for that special day to arrive! I'm believin' great things for your outcome! ma

Mary Ann, what a nice idea...I'll make sure we do that. Thank you

Eric and Caryn, you are both in my thoughts and prayers. Ma, that is a great idea! Love and Peace to you all, Bill

Surprise, surprise...T-Dm1!
 

Turns out that there is room in the weekly study so Caryn will be taking in part in this trial instead of the HSP90. I'm happy about this since this is a proven drug even though it's a phase 1. Hope it turns out to be great and I will give credit to all of your prayers and wishes!!!!

Lots of love, Eric

that sounds great!!!! When you get a chance let us know more about the trial. I see already that it is weekly. Is it a different dose?


Kim

Within this trial, they have 8 different doses they can give on the 3 week side and there's 3 different doses on the weekly side.

That's great news, Eric! You and Caryn keep fighting the good fight and stay strong. Love and prayers for you both, Bill

Hi
 

Hi Eric,

I am just checking in on you and Caryn. How are things going ,did you start the trial yet? I hope you have please know I think of you both all the time and pray Caryn does wonderful on this new trial. All my best.

Eric,

Great news! Now she can join the others on the board here who are on the TDM1 trial and having good results. Please keep us posted. You're both in my prayers.

eric .. are you sure about that.. the weekly trial is a dose escalation trial.. i think they are dosing at 2.4mg/kg in the weekly trial, and 3.6mg/kg every 3 weeks..
other than having to be infused every week, that weekly trial is the way to go. u get almost twice as much drug infused vs the every 3 week dose.

can you double check and get back to us..

run to live..

runtolive - I will double check and let you know. I'll pass that weekly benefit onto Caryn. I know I like it!

kareneg - she gives blood on Monday and first treatment on Tuesday.

I'll promise to keep you all informed.

Thanks and Love to all,
Eric

I am currently receiving 4mg weekly. That is all I can handle, and sometimes need to skip treatment. Some patients are receiving 2.4mg. I'm sure that would not have worked for me. I heard that the trial did go up to 2.9 mg., but they had to bring the dose down to 2.4.

Hi Eric,
It will be a long day for Caryn, and she will probably have slight chills and feel tired by the end of the day. Unfortunately, I had to go back to school and conduct Curriculum Night after my first infusion. Didn't get home until 9:00. After that first infusion, this drug is very tolerable. Caryn will barely know that she is on Chemo. I hope that it works for her. Currently, everyone at the Dana Farber is doing well with this drug. Only part I dislike about it is having to go every week.
Best regards,
Barbara H.