MET devastation & desperate for advice
 

As the title indicates our recent status change has been devastating news. Our initial diagnosis of stage 3 breast cancer was in July 2013. The chemo regimen with Herceptin, Adriamycin, Cytoxin & Perjeta began subsequently to the diagnosis. Double mascectomy in December 2013. Last Herceptin in Sept 2014. First the ct scan. Negative. Relief. Then the brain scan was next. Four confirmed small lesions (under 13 mm) that loom very large in our life. A second scan 11 days later confirmed the original four lesions and suggested a possible fifth lesion (higher contrast used).
Two weeks later she had 2 consecutive days of LINIAC Rad surgery. Another brain scan will be done by mid January 2015. Fingers crossed.
So now we begin our desperate search for trial vaccines in the San Francisco area and throughout the western US.
Unfortunately too many of you have had the same or similar experience We are open to any and all suggestions the HER2 family may have for us.
Best wishes to all and thanks.
Forher (husband of )

Re: MET devastation & desperate for advice
 

For Her,

The time until your next scan will be an anxious one, I am sure. I will keep you both in my thoughts and prayers and am sending positive thoughts for a clear scan.

I do not have experience with brain mets, but there are many here who are knowledgable and have had good experiences who I am sure will share with you.

I might suggest that your add your hormone status to your signature as that too is a factor in treatment.

My best to you both.

Re: MET devastation & desperate for advice
 

What resources are you using to find trials?

Re: MET devastation & desperate for advice
 

We found two clinical trials for my wife:
1. http://clinicaltrials.gov/show/NCT01921335 - This is the ARRY 380 trial
2. http://clinicaltrials.gov/show/NCT01494662 - This trial involves Neratinib in combination with Xeloda.

Both trials are run by Dana Farber.

Out of our 2.5 year journey, the brain mets diagnosis was the most devastating to us.

Hang in there, you are not alone. If you need to talk let me know.

Re: MET devastation & desperate for advice
 

I found a single vaccine trial that a) is still recruiting and b) does not exclude brain mets:

https://clinicaltrials.gov/ct2/show/...accine&rank=17

You might want to sign up at:

https://www.breastcancertrials.org/bct_nation/home.seam

After you complete a profile, they'll send you notifications. A cautionary note on that, though. I am early stage, but I wanted very much to contribute to research, so I nagged my oncologist about trials. She was useless, so I found one on my own. The trial I'm enrolled in is listed at Breast Cancer Trials, but it was never included in the trials they offered to me. I wrote to them about the omission, and they claim to have made some changes to their algorithm. I think it pays, however, to search the site anyway.

I also think it may be useful to pick some hospitals that interest you and look at their local trial site listings. My former cancer center had a number of trials that I did not find listed at clinicaltrials.gov. I'm a bit boggled by that, but if they're doing it, others may be doing it as well.

Another site that might be helpful is:

https://medivizor.com/

They send notifications of relevant studies and trials. It's another profile to complete, but after you've done a few, it doesn't take quite so long.

The Army of Women sends out notices of trials, but I've not seen any that would be relevant to your situation. Nonetheless, you might want to consider it one day when you feel like filling out yet another questionnaire.

Re: MET devastation & desperate for advice
 

One more link. Clinical trial listing at the National Cancer Institute:

http://www.cancer.gov/clinicaltrials/search

Re: MET devastation & desperate for advice
 

So grateful for your posts. I'm new to this and don't know where to begin. I'll start on those suggestions. I will keep you posted on process and progress.

Re: MET devastation & desperate for advice
 

Forher, your amazing, God's blessings to your whole family. Your all in my prayers.

Re: MET devastation & desperate for advice
 

Forher, I said before how I admire you, and all the partners, who have to step up and navigate a whole new world amid fear and uncertainty
It seems we do have to be our own advocates and do much research ourselves
Does your treatment facility have any really activist social workers or patient advocates who might do research for you and explore options? Sometimes you have to be the squeaky wheel
Have you called American Cancer Society? They might have suggestions
Just never give up hope. Always keep the faith

Re: MET devastation & desperate for advice
 

Been there. Done that. Look at Intrathecal Herceptin at MD Anderson. Nina was treated with 40 mg weekly with 0.4 gm topotecan twice weekly for four weeks, then 80 mgs per week IT Herceptin/0.4 gm Topotecan for 12 weeks. Depends upon meningeal to get approval, but they are not looking at deep brain as well. Let me know if I can get you to the right people by a private message.

Re: MET devastation & desperate for advice
 

Yeah, I just realized I missed the most important resource for him. Glad you found this thread, Rolepaul.

Re: MET devastation & desperate for advice
 

Go with Rolepaul. Not only does he live this nightmare, he's a chemical engineer.
All the best going forward,
Karen