Need optimism on TDM-1 please

KristinSchwick · 10-07-2011, 08:21 AM

I just got my tumor markers back for this month and they are up to the level when I was first dx with bone mets. Doctor is scheduling a PET scan and I am freaking out about what it might show.
He has mentioned trying TDM1 next, so I am looking for some good experiences on that. Has anyone gotten to NED on TDM-1 after failing Herceptin, Tykerb/Xeloda?
So scared.

Jackie07 · 10-07-2011, 11:25 AM

Kristin,

Here's a thread where many on this Board had shared their experience in T-DM1 (Joe had used T-DM! to express our excitement about it):

http://her2support.org/vbulletin/sho...hlight=T-DM%21

chrisy · 10-07-2011, 02:47 PM

Hi Kristin,
Optimism? Heck yes!!!!!

I was in an early Phase II trial, after having Herceptin fail after 2 years and an 8 month trial of Tykerb/Avastin. I had heard about TDM1, both at San Antonio BC Symposium (including a discussion about the Phase I trial in which a crowd of uber-oncologists were so excited they could barely contain themselves!) as well as from Her2sisters here. The phase II trial was opening up at UCSF JUST when I needed it.

I asked my doctor a similar question, why would TDM1 work even after Herceptin and Tykerb had failed? Of course, EVERYONE in the trials to that date had had both fail. She told me "because it's different. You are using the Herceptin mainly as a targeting mechanism, not relying on it to stop the cancer. The "DM1" piece does that"

TDM1 worked great for me for 3 years, bringing me to NED in 6 months. Although for me it was not a cure, while on TDM1 I enjoyed a great quality of life and "bought" 3 more years of research and progress. There are many others here who got, or are getting, great results.

It's a great drug - If you have an opportunity to use it, take it!

By the way, Jackie, it was I who coined it "TDM!". By accident at first because I didn't release the shift key, but I left it that way because of the GREAT response.

Sheila · 10-07-2011, 06:26 PM

Here is a link to a news segment last night on the news in Chicago, about TDM1...starring my Dr (Cobleigh) and my Nurse Isabelle.......it doesnt work for everyone, but for many it is a miracle....

http://abclocal.go.com/wls/video?id=...dicate&section=

hutchibk · 10-07-2011, 07:24 PM

Are you currently on Xgeva (denosumab) or Zometa for your bones? If all that is showing up is new bone mets, you should definitely consider and talk w/ your onc about the route of adding that in for bone met treatment before changing from Tykerb/Herceptin/Xeloda entirely just yet. Could be just the boost you need. I got several months of extra time on on Tykerb/Herceptin/Zometa (when we saw the spot appear on my adrenal gland) by adding tamoxifen again. Just a minor change bought us time to consider other options... which turned out to be T-DM1, so far doing well 6 months in.

Vicky · 10-08-2011, 04:11 PM

Hi Kristin,

I have had 9 treatments so far with TDM1. I am on the Marianne trial and it has been my first and only treatment so far. After just 3 treatments my liver tumors disappeared and have not returned, and the rest of my tumors shrunk. I have remained stable with no new activity thus far. I am still kind of a newbie and no, I am not NED, but I have to believe that a 6 month run of stable so far is encouraging! I hope this helps!

KristinSchwick · 10-10-2011, 12:04 PM

Vicky,
That is so wonderful to hear! I hope you and everyone else get to NED and stay there for a few decades. I assume it is given i.v.? And did you have any side effects? And lastly, how does your doctor monitor your response- does he/she look at blood tumor markers (which ones) or is it strictly by scans (how often). Thank you so much everyone.
Please continue to post your inspiring stories about TDM-1. Thanks,

Vicky · 10-11-2011, 02:30 PM

Hi Kristin,

I go for infusion once every three weeks, so yes its in an iv form and I have a port. I have a few nuisance side effects but really nothing too bad. I have a drippy nose and it gets dry and bleeds once in awhile. I still have some nausea the first day after treatment but it is managed for the most part with anti nausea meds. The trial calls for ct scans after every 3 treatments and an echocardiogram to monitor the heart- so far mine has been fine. I do also have bouts of heartburn, but manageable again with some Zantac. My onc does look at tumor markers and mine went from 80 to 45 and have stayed there so far. I have my next scans on Friday and I have round 10 scheduled for next Tuesday. Let me know if there is anything else I can answer for you, I am happy to.

Eva Sophia · 12-12-2011, 11:08 PM

I have been on Tdm1 w or wo pertuzumab since April. I had two breast lumps w mets to spine and sternum. My breast recurrence disappeared at the time of my first petct scan at eight weeks and the bone mets were much reduced. They still showed some activity but I had radiatiated them in january so the activity was likely related to that. As of November I was completely Ned.

Regarding side effects, I have been very tired as of the past six weeks. I also bruise easily. I have acquired telangiectasia ( little capillaries bursting) leaving red dots all over my chest and back and face. I've been told I'm the only one w this problem. I also have them in my nose and had two very bad bloody noses recently. Lastly, my nails have started breaking as of the past week - four nails in three days. Whole none of these side effects are very bad, the combination of them is wearing on me.

NEDenise · 12-13-2011, 06:40 AM

Kristin,
No sage advice...just sending prayers, and a huge hug through cyberspace.
Try to stay upbeat...there are still lots of "guns" in your arsenal - Vicky is proof of that, and Chris is practically a national celebrity on the topic!
Praying for good news soon...
Denise

KristinSchwick · 12-13-2011, 09:07 AM

Oh my goodness- Thank you everyone! Sometimes I feel like we need more posts like this... where it is strictly good news. Us stage IV gals need to focus on the positives and yet we need to remember those who we loose, damn cancer. Vicky, thank you for telling me your tumor markers- my onc relies heavily on them, and I never know whether they are reliable or not (he thinks they are). But I still worry. Hope everyone gets a big NED in their stocking this Christmas!

schoonder · 12-21-2011, 12:43 PM

Here's link to SABCS abstract where actual participants in a phaseII her2+ 1st line MBC trial provided input on how treatment with T-DM1 was received.

http://www.oncologyreport.com/news/c...b01bf5876.html

KaiM · 12-21-2011, 04:49 PM

Kristin, I must admit I felt a certain kinship to you since I first joined this board. We have such similar stories and I am hoping and praying that TDM1 is your magic drug, or at least keeps you stable for a long time. I also wanted to add that it looks like you are only battling bone mets? if so, I think bone mets are the 'least' serious of the mets and don't want you to lose faith.

KristinSchwick · 12-28-2011, 07:05 PM

KaiM,
Thanks for your message- I too feel very close to all the women out there fighting stage IV. It is such a different experience than stage I-III experience. I have my PET scan tomorrow and then will get the results on Tuesday, hopefully it shows only minor progression. I have heard before that bone mets are the least problematic- and that does bring me much hope.
Are you able to tell me more about yourself? Were you pregnant when you were diagnosed? As I see you have a 5 month old. What are your treatment plans? Are you currently on TDM-1?
Thanks for your message! Hugs and prayers headed your way.
Kristin