I'm off the T-DM1 trial

Barbara H. · 10-01-2009, 04:29 PM

Hi everyone,
Some of you may remember that I developed a side effect of lung inflammation from this drug. The inflammation was stable for the first half of this year, but my recent CT scan indicated an increase great enough to make the decision to stop this drug. I have been on the drug for two years and it has kept me in remission or stable since bone mets can not be easily measured.

I have to say that TDM1 was a great drug for me and I hope that many of you will have the opportunity to use it in the near future. Since I am the only one who has this side effect, I wouldn't be concerned about it.

I will now probably start Tykerb with Herceptin in about two weeks, although there is a possibility of a trial if I qualify. Since I do not have measurable disease I may not qualify.

I'm not happy, but that's the way it is with stage 4. I'm off to read about the management and side effects of Tykerb.

Best regards,
Barbara H.

StephN · 10-01-2009, 04:46 PM

Dear Barbara -
Gosh! This is a tough break. At least it is not due to progression.

I know just when school is going full tilt again is not when you want to have to change to a drug with more possible side effects.

Was just wondering if you could take a break from T-DM1 such as with Herceptin when we get a LVF drop?? Since this is rare, I still think Genentech needs to take a look at this possibiliity, to see if the inflammation will subside.

Laurel · 10-01-2009, 06:42 PM

I am so sorry you had to leave the trial, Barbara. I am hoping this set back will lead you to something even better for you. Your are very positive and upbeat. I admire those qualities in you as you face this fight! Praying for the Tykerb and Herceptin keep you stable!

Lori R · 10-02-2009, 06:46 AM

Dear Barbara,
Sorry to hear about this rare side effect. We all know how special you are but now was not the time to be unique.

Who would make a decision about taking a break and then possibly going back on T-DM1? Would you need to wait until the drug is FDA approved and then approach your Onc?

There are many more chem options, possibly use them, keep the mets stable and then jump back on in 2010.

Cheering you on!!!

chrisy · 10-02-2009, 09:04 AM

Barbara,
Sorry to hear this - you hate to get off a "winning horse" and DM1 seemed to be giving you a great ride. Now it seems you will again be blazing a new trail with the Herceptin/Tykerb - or whatever is next. I look forward to hearing your reports.

Pam P · 10-03-2009, 04:49 AM

I am disappointed to hear that you can't continue in this trial. And I hope you will be able to return to this drug once it's off trial. In the meantime herceptin/tykerb combo hopefully will keep everything stable or better while your inflammation can resolve. If this lung inflammation is rare - are they sure it was caused by the t-dm1 or possibly some other non related cause?

Barbara H. · 10-03-2009, 08:05 AM

HI Pam,
I had a lung biopsy last November that determined that it was inflammation that was probably caused T-DM1. I had many CT scans since I started the trial two years ago and the initial scans did not show this inflammation.
Thanks for your concern.
Barbara H.

Joan M · 10-03-2009, 09:57 AM

Barbara,

Sorry to hear that you're off the T-DM1 trail.

You really had a good run with the trail, and I hope it's effects last and that your lung clears up.

Joan

AlaskaAngel · 10-03-2009, 12:25 PM

I am sorry that problem has cropped up for you, Barbara.

I may not be current about this so take it with a grain of sand, but I think for some, lung inflammation may have been one side effect of lapatinib (Tykerb) as well.

Can those who have been on Tykerb comment on that?

AlaskaAngel

Barbara H. · 10-03-2009, 06:45 PM

Lung inflammation is a side effect of Tykerb and that worries me. However, it is also a side effect of Herceptin and I never had that problem when I was just on Herceptin.
Barbara H.