Tulip trial

Nicole39

Hello all!

I’m curious to know if anyone has heard of the current Tulip trial studying SYD985

trastuzumab duocarmazine

Moderators

Hi Nicole -- you may want to try doing a Search (in the blue navigation bar on the left of the screen) for Tulip to see if anyone is talking about this. Also, you may want to try posting in the Clinical Trials, Research News and Study Results forum. We hope this helps!

--The Mods

Nicole39

Thank you. I searched prior to the post with no luck. Anyway, it is a current trial that I’m trying to get into

LoriCA

Hi Nicole, I think this is what you are looking for? Click on "Contacts and Locations" link on the right.

https://clinicaltrials.gov/ct2/show/NCT03262935

Lori

Nicole39

Thank you so much Lori. I have all the info on study as I'm currently trying to get in. I guess what I was hoping to find was someone else with experience with this new drug or if anyone has heard good or bad info on it. I’m really hoping I’m making the right choice..Thank you for taking the time to look into it

Nicole

DazzlingEagle

I don't know if you are still looking at this thread but I am in this trial. Ive had one treatment so far. I haven't had very many side effects except an upset stomach for a couple days. im not allowed to wear my soft contacts. I haven't had any followup imaging but a lot of my tumors are in my shoulder and by just my touch they don't seem as big or painful

Moderators

DazzlingEagle, thank you so much for sharing your experiences with this trial. Very helpful!

Sending you best wishes,

The Mods

Pei128

My mom is currently on this trial, and has gone through 6 cycles. There isn't much discomfort with this, she can eat and sleep. But she often still feedback about the hot flushes. I'm not sure the hot flushes are caused by this. On this trial, her eyes are being closely monitored as dry eyes are a common side effect. It's unfortunate that it causes her cornea to have scratches. However she doesn't feel pain. She uses eye drops, gels constantly. She was also given steroid eye drops to be used for 2 weeks, but it's not improving. She will be seeing a cornea specialist coming soon.

arolsson

I just signed onto the TULIP trial. Recently failed with Kadcyla (sorry--Kadcyla failed ME!) with progression in my liver and especially in my bone mets. Hopeful but scared of the side effects. My eyes have been dry for a decade since I had them lasered to skip glasses (my own fault I guess). I've also been lucky to avoid neutropenia and am not looking forward to losing my hair for a THIRD time.

Taking my teenagers to Mexico to see their godmother while waiting for the trial to begin. Anyone else feel like every trip may be "the last time I see.."?