long run with TDM1 is over

Kim in DC · 10-28-2010, 07:42 PM

I have one soft tissue met in the chest and and 3 small mets in the liver. I have been so wrapped up in TDM1, that I have not paid attention to whats new on the horizon.

Questions:
1. Do you have to be Brac positive for parp trials?

2. Whats the news on Neratinib? Does anyone know when it's supposed to get approved?

3. I've used tykerb and herceptin. Is there any info on using both with a chemo like Gemzar(haven't tried that one yet)?

4. Do your mets have to be a certain size for cyber knife? Mine are still in the milimeters.

I meet with my onc on Wednesday. I would love to be able to try cyberknife and Herceptin and or Tykerb with Gemzar

Sorry for all the questions. My Mindis going in a million directions.

Kim

caya · 10-28-2010, 07:55 PM

Hi Kim,

Don't be "sorry for all the questions." That is why we all come here - for answers and to share information, as well as support.

I can't help you with this, but I'm sure some members will chime in with suggestions.

xo hugs

all the best
caya

Lori R · 10-28-2010, 09:43 PM

Dear Kim,
I was sorry to hear the disappointing news. But...we will rally and get you back on track.

I can provide some thoughts regarding the liver met. I've used cryosurgery twice to beat back my liver mets. It is an outpatient procedure and has a VERY minimal recovery window.

I encourage you to consider it, as it feels great to just whack that met back immediately. Others have used Cyberknife to the liver, but my Onc wasn't 100% certain about how the liver reacts to radiation.

Even with the cryosurgery, we followed it up with another round of Chemo, so continuing to research the most current treatment options is still appropriate.

Sending comforting, healing hugs.....Lori

Jackie07 · 10-28-2010, 11:56 PM

About Parp trial:

There are whole bunch of them available according to the PubMed database:
http://clinicaltrials.gov/ct2/results?term=PARP

Below is one of them:

PARP Inhibitor for Triple Negative or BRCA1/2 Breast Cancer

Show again
Phase I Study of ABT-888 in Combination With Cisplatin and Vinorelbine for Patients With Advanced Triple Negative Breast Cancer and/or BRCA-Mutation Associated Breast Cancer (7161)
Summary

Researchers are trying to develop new therapies for triple negative and BRCA-positive breast cancer. Chemotherapy drugs, such as cisplatin (Platinol®) and vinorelbine ditartrate (Navelbine®), work in different ways to stop the growth of tumor cells, either by killing the cells or stopping them from dividing. ABT-888 (veliparib) is a poly(ADP-ribose) polymerase (PARP) inhibitor. It may stop the growth of some tumors cells by blocking some of the enzymes involved in DNA repair that are needed for cell growth. Studies suggest that giving ABT-888 together with combination chemotherapy may be more effective than chemotherapy alone. This trial is studying the side effects and best dose of ABT-888 when given together with cisplatin and vinorelbine ditartrate in treating individuals with recurrent and/or metastatic breast cancer.
This is a Phase I trial
What's involved:

All participants will receive the following during each 21-day cycle:

ABT-888 (veliparib) by mouth twice daily on days 1-14

Cisplatin (Platinol®) by IV on day 1

Vinorelbine ditartrate (Navelbine®) by IV on days 1 and 8

Treatment repeats every 21 days for 6-10 cycles in the absence of disease progression or unacceptable toxicity.
Note: Treatment with ABT-888 alone may continue in the absence of disease progression or unacceptable toxicity.

Additional procedures:

Please contact research site
Trial length:

4-7 months
Post-trial follow-up:

Up to 30 days
Sponsor:

Other
More information

NCI listing including eligibility criteria and contact information: Cancer.gov (PDQ®) [Aug 2, 2010]

Jackie07 · 10-29-2010, 12:15 AM

Here's another one that seems to cover many different conditions:

http://clinicaltrials.gov/ct2/show/N...m=PARP&rank=59

Below is an article that mentioned about Cyberknife being used on tumor as small as 4 mm.

http://www.ncbi.nlm.nih.gov/pubmed/19781358

This chart shows that it can be as precise as less than 1 mm:

http://www.sdcyberknife.com/dr-comparison.htm

Jackie07 · 10-29-2010, 12:44 AM

CourtneyL has used Gemzar with Herceptin and received good result:

"... Gemzar is also a good chemo option, paired with Herceptin. You could receive it locally (as opposed to going to Chicago) as it is an approved therapy for breast cancer. I did it for 6 months and it cleared up my lung involvement with minimal side effects."

Ellie F · 10-29-2010, 02:38 AM

Hi Kim
No advice to offer but just wanted to say sorry you are back in the battle.I know you will soon have this back under control.
Hugs Ellie

Sheila · 10-29-2010, 06:04 AM

Kim
So sorry the run TDM-1 is over, but I am sure something will work even better now....thinking of you and praying for the perfect combo!

chrisy · 10-29-2010, 09:18 AM

Kim,
As a TDM1 sister I know it is nice to be able to have a long ride on a targeted therapy. Sorry to hear its time to change horses.

I have no experience with any of the options you are considering. But I think that if you are considering cryo or rfa or cyberknife, smaller is better. I like the idea of the local treatment backed up with a systemic path.

I too am not up to date on many of the new things - but I believe Neratinib approval is still too far in the future (so maybe it will be ready the next time you need a change of course).

Stay strong, sister!

Darlene Denise · 10-29-2010, 06:02 PM

Kim: I love the Cyberknife, but not a fan of it's use in the liver. Lesion total volume has to be less than 6 cm. Primary reason, is the liver does not regenerate from radiation. I have consulted in regard to my liver. I would think it could be a good option for your other met though.

I have also consulted for RFA, Nanoknife, Cryoablation and surgery. Unfortunately, my lesions are to close to the portal vein and bile ducts to use any focalized treatment. My consults were just a few months before starting TDM!.

From my inquiries and reading, I favor either surgery or Cyroablation. There is recent data that indicates using Cyroablation (freezing) induces an immune response by the body against bc. I also like that as the ice ball forms in the lesion, it is very easily seen on real time CT to get all of the lesion and spare healthy liver tissue.

If I were in your situation, I would certainly consult for the focalized or surgical options.

By the way, PARP is for triple negatives. There is a vaccine trial for advanced breast cancer at University of PA and Hopkins. Also look into PKI3, which is an inhibitor of another pathway in Her 2 +, Sarah Cannon, Dana Farber currently have some in study. May be some in your area.

Sorry for this unexpected progression. Keep us up to date.

Stay strong....Darlene

Kim in DC · 10-30-2010, 03:26 AM

thank you all for the support!!!!!!!!

Barbara H. · 10-30-2010, 11:13 AM

Hi Kim,
I am very sorry to hear that your use of TDM1 has ended. I have been on Tykerb/Herceptin for over a year after TDM1 and this combo is still working for me. I notice that Herceptin worked for you once for a long time. I also noticed that you have already tried Tykerb. Nevertheless, it might be worth it to try these two together. This treatment is very easy for me and is also targeted therapy.
Best,
Barbara H.

Jean · 10-31-2010, 04:25 PM

Kim,
I have no advice on a new treatment - but did want to reach out to you and wish you all the best in your new treatment. The tykerb and herceptin appear to be a good combo (from what I have read and heard on site).
What ever road you take please know my prayers and positive thoughts are with you.

You are a strong fighter and you will do it again.
Jean