Ideas? Put your propellers on - (Chrisy I need you)
 

A very dear friend of mine is having progression. All of her mets are in the bones. They can't get anything to hold her for more than a few months at a time.

She has been on Abraxane/Avastin for the last 3 months. She has already been on Herceptin, Xeloda, Tykerb, and all the other normal regimines that we have all had.

(I don't know if they have tried zometa, navelbine or gemzar...)

Herceptin and Tykerb together gained her very little, and was hard on her heart.

Her doc decided today - no more Avastin. She is on oxycontin for bone pain (has been on it for over a year), she is in a wheelchair much of the time because some of her bone mets has been in hip bones, and caused hip breakage about 3-4 years ago. She had surgery/hip replacement w/ pins, but that hip has continued to be weak. She has constant and fairly debilitating fatigue and nausea.

Her hubby tells me that mentally she is exhausted... and not terribly inclined to keep looking for options, but when I saw her today, she was interested in me asking my friends here about ideas.

We are close enough that she can go to Houston - to MDA, which she has been to in the past; or to Baylor College Breast Center (Dr. Kent Osborne and associates).

Chrisy - based on your experience, could she possibly qualify for the trial you are on? Do you know where in Texas it is open? I forget what it's real name is - as I call it Run DMC...

Thanks everybody!

Brenda

Hi Hutchi

Sorry to hear about your friend's progression. Like we needed another reminder that canser sucks.

The run DMC drug is officially called Trastuzumab-MCC-DM1. I call it run DMC because it is WAY shorter and because it makes the DaMn Cancer run.

The phase II trial I was in is closed, but excluded anyone with more than 3 prior chemos so your friend may not have been able to qualify anyway.

There is a new trial which is supposed to be opening which is looking for participants with lots of chemo, multiple herceptin regimes and tykerb and xeloda. So sounds like she would definitely be eligible for this one.

I've attached a link to it - it doesn't say where it's offered but the contact name is there.
http://clinicaltrials.gov/ct2/show/NCT00679211

It requires radiologically measurable disease - which sometimes is an issue with bones but I'll bet if her doctor pushed they would find a way. I know that one of the ladies here had bone mets and was on one of the studies (maybe the Phase I). It worked for her, by the way.

I think this trial would definitely be worth doing - even with multiple "failures"of her2 targeted therapies. Dm1 can still work because it works differently - it's only using the Herceptin to find the target, then the DM1 does the cancer killing. It's not as "benign" as Tykerb or Herceptin alone in terms of side effects, but it would be way easier than any of the chemos and would seem like a vacation after what she's been doing.

I know there will be plenty of other ideas out there...

Take care
Chris

The following cancer centers in Texas all participated in the Trastuzumab-MCC-DM1 phase II evaluation. It is my understanding that this trial is no longer enrolling patients. However I do believe that these same centers will likely be involved in a new phase II evaluation.

More detailed particulars pertaining to this trial can be obtained by use of this link.
http://www.clinicaltrials.gov/ct2/show/NCT00679211?term=dm1&rank=3

List of centers with contact information that are expected to participate:

Cancer Specialists of South Texas
Corpus Christi, Texas, United States, 78412
Contact: Katrina Powell 361-993-3456 kpowell@corpuschristicancer.com

El Paso Cancer Treatment Ctr
El Paso, Texas, United States, 79915
Contact: Linda Krasowski 915-595-6886 linda.krasowski@usoncology.com

Texas Oncology, P.A.
Bedford, Texas, United States, 76022
Contact: Cynthia Schoenfeldt 817-359-9033 cynthia.schoenfeldt@usoncology.com

Texas Oncology Cancer Center
Austin, Texas, United States, 78731
Contact: Gabriella Iannone 512-427-9467 gabriella.iannone@usoncology.com

Texas Oncology PA
Fort Worth, Texas, United States, 76104
Contact: Nori Sullivan 817-850-2000 nori.sullivan@USOncology.com

Texas Oncology, P.A.
Dallas, Texas, United States, 75231-4400
Contact: Myrna Williamson 214-739-4175 myrna.williamson@usoncology.com

Sammons Cancer Center
Dallas, Texas, United States, 75246
Contact: Marnie Fisher 214-370-1000 marnie.fisher@usoncology.com

Texas Oncology, P.A.
Houston, Texas, United States, 77024-2305
Contact: Dorothy Caldwell 713-67-1722 dorothy.caldwell@usoncology.com

US Oncology
Midland, Texas, United States, 79701
Contact: Mary Williams 432-688-0821 Mary.Williams2@USOncology.com

USO
Dallas, Texas, United States, 75230-2510
Contact: Rhonda Waldrop 972-566-7790 rhonda.waldrop@usoncology.com

USO - Tyler Cancer Ctr
Tyler, Texas, United States, 75702
Contact: Linda Dunklin 903-579-9800 linda.dunklin@USOncology.com

Waco Cancer Care & Research Ce
Waco, Texas, United States, 76712
Contact: Theresa Schroeder 254-399-0741 theresa.schroeder@usoncology.com

Hucklebuck, you and your friend will be in my thoughts and prayers

Adding prayers to the others for your friend!

Thanks everyone, Chrisy and Schoonder especially! I will pass all of your VERY valuable info along to her hubby, tuit de suite!

Hi Brenda,

My bones have been a problem too. I have been on Zometa for 2 1/2 years. I had luck with Gemzar (hard on the counts) and the side effects weren't bad. I was on for 6 months and got about a year of response. Next up for me is Navalbine and Carbo most likely. Not sure how I will do on the Carbo had to stop after two doses when it was combined with Abraxane.

I wish your friend the best and pray that she can get this under control soon.

Carolyn

thanks for the info and thoughts Carolyn~

Brenda sorry if this has been mentioned already but a friend of mine is taking megace (I think) for her bone mets and is doing well so far on it. if your friend has'nt had this it may be another option. My best wishes to her and hope she finds something to help asap!