T-DM1 trial with Pertuzumab - my friend is IN!

[StephN]

Subject:
A Phase II, Open-Label Study to Evaluate Corrected QT Interval Effects of Trastuzumab-MCC-DM1 (T-DM1) in Patients With HER2-Positive Locally Advanced or Metastatic Breast Cancer and to Evaluate the Safety and Tolerability of Combined T-DM1 and Pertuzumab in Patients With Early Disease Progression While Receiving T-DM1 Alone

Just wanted to post about my friend here locally who has been accepted for this trial in Coeur d'Alene, Idaho (there are 4 or 5 other locations, including Karmanos in Detroit). She reports feeling very well just over a week out from her first infusion.
She does have SKIN METS on arm and chest which were starting to run wild. At this point the growth has halted and seems to be improved! Otherwise, she has several bone mets.

This is not a large hospital but a community clinic in a small, yet easy to reach community. My friend takes a commuter plane and is across the state faster than one can get down I-5! The taxi or hotel shuttle meets her and everything is close by and top notch. She says they are dialed in very strongly with Genentech, and that the staff is as good or better than here at our large cancer centers.

I will post some other updates for her as she goes along. She says that location is swamped with inquiries!

There is a beautiful resort there on the lake. My brother takes his wife there for spa/golf get-aways.

[chrisy]

Steph that is great news! I think that trial is very exciting - blocking many pathways and all.

And if she can figure out how to combine spa treatments with the other kind of treatment, what could be better!

[Sheila]

I have called 3x about the one they were to start here in Decatur, but nothing yet...Genentech said so far only 2 are open and accepting pts. I keep hoping!

[ElaineM]

Good luck to your friend. I hope the treatment helps her.

[Lori R]

Steph,
So pleased for your friend!! Wishing great success in her treatment. (and in a beautiful location)

I feel like we have the inside scoop on these trials and the great results they are delivering.

Please keep us posted on your friend's progress as it is very inspirational.

Lori

[schoolteacher]

Stephanie,

Glad to hear the good news about your friend. Keep us updated. Did you get the TVG's newsletter? They mentioned the HER2 board. There is also a 2nd phase trial for skin mets and chest wall.

Amelia

[Joan M]

Steph,

That's good news about your friend being accepted into the trial, and I'm glad to hear that Genentech is reaching out to community hospitals.

Joan

[RobinP]

Steph,

Interesting trail. Good luck to your friend. Keep us posted on how she does.

[StephN]

Here is a brief update on my friend. She seems like a NEW PERSON http://her2support.org/vbulletin/images/icons/icon7.gif after just three treatments of the T-DM1 drug. This new drug has allowed her red and white blood counts to recover so that she has more energy and pep. Better appetite too and she has gained some weight back.

She reported that for the first 2 or 3 days after the first 2 treatments she was pretty tired and had some pain in the tumor sites. After the third treatment last week she did not need to hunker down as before. Her body seems to be adjusting well.

The best news is that her skin mets and lymph nodes have reduced quite a bit and she is much more comfortable (just on visual examination). Scans soon so she will see how the drug is affecting the bone mets.

She sounds so hopeful now. The trial will close soon. They are getting people from the major cancer centers all over the country and internationally.

More in a week or two after scans.

[Carolyns]

Hi Steph,

That is great news about your friend! I thought about going to Idaho... the people I spoke with there were so very kind. It was too far for me and Detroit is a non-stop flight from Ft. Lauderdale Florida. The folks at Karmanos are great but it is a very large facility not like what you describe in Idaho.

We have two sites open now in South Florida. My doctor's office in Hollywood and another center in Boca Raton.

I also had a tougher time with the first two infusions but find myself getting stronger by the day after the third. Best wishes to your friend it sounds like things are looking up!

Love, Hope, Peace, Carolyn

[Barbara H.]

T-DM1 is a great treatment. It worked for me for two years. I would still be taking it, but I developed lung inflammation and had to stop. I hope to try it again with careful monitoring after it is approved. I start Tykerb with Herceptin this Thursday. I really feel for Sheila because my insurance approved it right away. I don't understand why her insurance is giving her such grief. I actually wish she could start T-DM1. It could very well work for her, and it is such an easy drug compared to what she has dealt with.
Best regards,
Barbara H.

[StephN]

Just wanted to report that our friend is still doing well in this trial and so far results are looking positive and in the right direction.

[Rich66]

What is her ER and her2 status? Same between primary and mets?

[StephN]

Rich -
Over the years her hormone status has changed with some of the mets that were able to be biopsied. Her2 status was consistent as far as could be determined, as she had years of Herceptin and Tykerb as well.

She was first dx'ed DCIS in the mid-90's. First mets showed the HER2 status.

[Rich66]

Any idea what her FISH score was? just trying to determine if there is potential benefit to borderline patients.

[StephN]

I don't know if she was ever checked by FISH. I know the first time she was not, as I was not. We had that conversation - just +++.

[waterdreamer]

Hi,
I am new here, just wanted to let you know, that I am on this trial, but I am on the Arm B of the trial, not Arm A, which is T-DM1. The arm I am on is Taxotere and herceptin. I have done two treatments so far, and had a reaction to taxotere, on the second infusion, in that I got short of breath and it was difficult to breathe. They slowed it down and I am doing well. I have mets to the lungs and vertebrae. I do a CT scan on the 19th Feb. On this trial, if my cancer is progressing, they will switch me to the T-DM1, but since this is my first experience with chemo, I do believe the Taxotere and Herceptin will do the trick. Is there a good link on this site, discussing the side effects of taxotere and Herceptin? Thanks and will keep you updated, if you are interested.
Fern