Trying to get into T-DM1

[Kim in DC]

My sternum is acting up again so I am trying to put all my ducks in a row to enter the T-DM1 trial. To qualify, I must first have one more cyce of regular Herceptin because you are supposed to have 6 weeks of Herceptin therapy for mets.

It seems to me that it's either feast or famine with this drug and I'm praying I can feast for years!!! I'll keep you guys updated.


Kim

[SoCalGal]

I hope herceptin does it's trick...if not you know what to do next!
xo
Flori

[eric]

Kim,
It's an exciting drug so I understand your strong desire for it. My thoughts are with you and sounds like you're too committed to be denied. Best of luck.
Eric

[Kim in DC]

If this doesn't work I will investigate cyberknife. When I look at people on this list, I see a lot of people getting some mileage with local treatments like radiation and resections. My onc can still try her systemic potions and I can at least have a bandaid effect. Besides, this sucker is starting to hurt!

Kim

[runtolive]

it seems you have had plenty of herceptin / tykerb/ xeloda in the past .. why do they require more treatment with herceptin

run to live

[Kim in DC]

Almost all the the herceptin I had was pre mets diagnosis. I was able to stay on for years because they didn't really determine if my second primary was a recurrence or a primary. After I was officially diagnosed stage IV, I had one cycle of Hercepting and that counts for 3 weeks. The arm of the trial that I am entering requires 6 weeks of treatment with herceptin with mets.

[chrisy]

Kim, with your experience on the Omnitarg trial I agree you want to be sure they've got all the requirements down correctly. Check on what the washout period is (duh - like you haven't learned that one the hard way) and time your scans accordingly so you can get started promptly. You may find the DM1 a little tougher than plain vanilla herceptin - but it's also WAY harder on the cancer cells!

Good luck on getting into this trial - and I look forward to hearing good reports from you!

[runtolive]

good luck now, and when you get into the trial. looking forward to another tras-dm1 success story.. right now it looks like about 50% of those on this board who have been in the trial have achieved significant success. crissy, barb, verna, mpb... all NED or darn close...others??

run to live.

[Barbara H.]

You have to have measurable disease to qualify for the stage 2 T-DM1 trial. It is quite difficult to measure a response if the cancer is only in the bones, except when there is progression. The bone and CT scan just show that my bones are stable. I only knew that I was doing well when my tumor markers went into the normal range. I certainly wish there were a way to know for sure that the bones are really NED.

I finally did have my VATS lung biopsy last Monday. All went well, except I do not tolerate pain medication. It was not pleasant when they took that tube out of my lung. I went home the next day and had very sore muscles. I also had a difficult time sitting up and getting out of bed. I decided to stay home from school for the rest of the week. The preliminary results show no cancer cells and some kind of fibrosis. Right now I am off the trial until I heal and receive the results of the biopsy. If I am able to keep my lungs stable and the trial continues to work for me, then I will go back on it. It's been a tough week, and I really feel sad about Lily.
Best,
Barbara H.

[Joan M]

Kim,

If you can get into the T-DM1 trail you should go for it.

When I had my lung recurrence I tried to get into the trial but it was closed in three locations in my area.

After that I decided to do the radiofrequency ablation which is a local treatment. The recurrence was from the lung wedge resection I had in spring of last year. Even though the margins were clean, the cancer recurred in that area this spring.

The sternum is an area of the body that can be treated locally. Also with surgery. But with my surgical experience, radiation might be the way to go if for some reason the trial doesn't pan out. However, a lot of women on the board are doing well on the trial.

Joan