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-   -   FREE Brain MRI FREE (https://her2support.org/vbulletin/showthread.php?t=40532)

Joe 07-23-2009 06:20 PM

FREE Brain MRI FREE
 
Early Detection of Brain Metastases from Advanced Breast Cancer through Education and Screening

Inclusion Criteria
  • Subjects must have an initial primary diagnosis of high-risk and/or HER-2 positive breast cancer. For purposes of this screening study, high-risk breast cancer at initial diagnosis is defined as:
  • Stage IV disease, OR
  • HER-2 positive Stage III disease

B. Subjects must be ³18 years old.

C. Subjects must be within 3 to 36 months of first metastases or Stage IV diagnosis or within 12 to 36 months of initial diagnosis of HER-2 positive Stage III disease.

D. Subjects must sign a written informed consent form, approved by the Institutional Review Board (IRB).

Exclusion Criteria
  • Subjects with a prior diagnosis of brain metastases.

B. Subjects who are unable to be safely exposed to magnetic resonance imaging (MRI). Most common exclusions include, but are not limited to, pacemakers, implanted defibrillators, neurostimulators, aneurysm clips, cochlear devices, or any other institution contraindications.

C. Women who are known to be pregnant.

D. Unwillingness of subject to give written informed consent.

For more information about the study, please call (773) 250-0400 and select menu option “8” between 8:00 AM & 5:00 PM CST


Michelle Catalano
Clinical Research Coordinator
Chicago Institute of Neurosurgery and Neuroresearch
4501 North Winchester, 4th Floor
Chicago, Illinois 60640

(773) 250-0422 Office
(877) 713-2694 Pager
(773) 250-0497 Fax
mcatalano@cinn.org
http://www.cinn.org

Joe 07-24-2009 12:33 PM

It is my understanding that you do not have to live in and near Chicago. Have your oncologist make the necessary arrangements with the CINN foundation and you may receive your MRI locally.

Regards
Joe

chrisy 07-24-2009 04:46 PM

Oh I read the title wrong...I thought you could get a free brain. Oh well....

mmoons 07-24-2009 06:01 PM

Lol
 
Chrisy-

You are so funny!!!

freyja 07-24-2009 07:02 PM

Great! I'm calling first thing in the morning...or maybe I'll have to wait til Monday. Thanks for the tip!

hutchibk 07-24-2009 08:37 PM

You and me Chrisy - I thought the same thing.

The Man with Two Brains is one of my fav movies.

Just call me Dr. Hufurrrrr.

Brenda_D 07-25-2009 03:22 PM

I contacted them about it before and then my hubby didn't want to make the trip to Chicago. If they'll do it locally, then I'm in.

chicagoetc 07-26-2009 12:15 PM

I think I contacted them before, gave information (I qualified) but then they never got back to me. Maybe they are more seriously pursuing the study now.

Melanie

Joe 07-26-2009 01:39 PM

Melanie,
They had personnel problems. They have promised to follow up on all applicants.

Regards
Joe

Chelee 07-27-2009 12:31 AM

Chrisy, lmao! Too funny. :)

Chelee

chicagoetc 07-29-2009 05:11 PM

Re: FREE Brain MRI FREE
 
It doesn't make sense to me that they would limit the study to those in the Chicago area. If so, how are they advertising? I called and, Joe's right, this time they are serious. I'm supposed to meet with them and get an MRI probably sometime next week. Maybe I can ask them then. Or, better yet, one of you who has called from outside of the Chicago area could say.

Melanie

freyja 07-29-2009 07:28 PM

Re: FREE Brain MRI FREE
 
I called them Monday and left a message and they called me back Tuesday. They had trouble getting enough people in the Chicago area so they're trying to take others. They just have to contact my local MRI people and make sure they will do the MRI for the same price that the study's grant pays. If that's ok then I'll get it. I should be hearing back from them Monday. I'll let you know what happens.
Thanks again for the info Joe.
Celeste

freyja 08-10-2009 05:45 PM

Re: FREE Brain MRI FREE
 
Turned out that MRI's are much much more expensive in Oregon than Chicago! Conveniently, my husband's going to Chicago for work soon and this was a good excuse for me to go see him while he's there! I'll have my brain MRI soon. Aaaah, I feel better now. I didn't want to have to lie to my doctor to get one, and now I get to help support a study that hopefully will help prevent others from having to do that, too. This came along at the perfect time for me.
Joe and Christine, I see you taught your new dog some old tricks!
Love, Celeste

schoolteacher 08-11-2009 01:09 PM

Re: FREE Brain MRI FREE
 
Michelle Catalano returned my phone call yesterday about the Brain Metastes trial.

I am going to donate my MRI results that I had done in June to the trial. She indicated that I would need to have a follow up MRI in June 2010.

I told her that if the amount they have is not enough to pay for the MRI. I will talk to my insurance company about the remainder.

This study is going to try and convince insurance companies that it better to be proactive about checking the brain for HER2 metastes.

They need 50 participants, and I think she told me they have around 12.

Amelia

Chelee 08-12-2009 01:01 AM

Re: FREE Brain MRI FREE
 
I've love to have a free brain MRI...but I'm 7 months out too far darn it. :( I've been having bad headaches for a while now...and I'm so tired of fighting my oncologist for everything.

I thought they would of had this study filled the minute it was posted. I'm really surprised they only have 12 of the 50 they are looking for. Maybe I could email them...do they ever make exceptions for studies like this? Probably no such luck...right?

Chelee

freyja 08-20-2009 08:23 AM

Re: FREE Brain MRI FREE
 
Got the MRI done! It wasn't easy, though. I was in it for about 5 minutes when they pulled me out and said, "just a minute". Lots and lots of minutes later they said their computer was down and they were trying to fix it. Couldn't get it fixed that evening, so I had to delay the next morning's flight so I could do it the next morning. Aaaah! So frustrating, and weird that it would happen at that moment, but it worked out. I'll get back to you when I get the results!
Celeste

chicagoetc 08-23-2009 08:44 AM

Re: FREE Brain MRI FREE
 
It seems odd to me that they would have trouble recruiting. There are probably half a dozen cancer treatment centers in/around Chicago. I'm sure there's a good reason. I just don't know what.

Melanie

Patty F 08-23-2009 11:44 AM

Re: FREE Brain MRI FREE
 
I am scheduled for my MRI on the 29th.
Keeping fingers crossed that all is well.

Brenda_D 08-30-2009 09:05 AM

Re: FREE Brain MRI FREE
 
I called and left a message. They never called me back.

freyja 09-04-2009 04:54 PM

Re: FREE Brain MRI FREE
 
It's official......(drumroll)....my brain is clear! Whew. I feel sooooo much better. I asked Michelle about whether she thought they might take on patients who maybe didn't "quite" meet the criteria for one detail or another and she said they should contact them and ask and they'll figure it out. I have also experienced some long wait times for return calls, so don't give up too easily, and call and call again.
Celeste

Chelee 09-04-2009 05:11 PM

Re: FREE Brain MRI FREE
 
Celeste, Congratulations...thats wonderful news. :) I know what a good feeling that is when you get the all clear. YEAH!

I'm going to email them and see if they "might" consider letting me in this study...I meet all the criteria except that I'm a little further out then the 36 months. It certainly can't hurt to email them...so off I go. lol Thanks for letting us know they might accept people outside their criteria...I for one apperciate it. Again... big congratulations.

Chelee

Brenda_D 09-14-2009 08:53 AM

Re: FREE Brain MRI FREE
 
I called again and left another message stressing that I'm quickly coming up on the 36 month out date, so need an answer on whether they are interested in my participation. So, I'm hoping for a response soon.

charlotte 09-17-2009 07:53 PM

Re: FREE Brain MRI FREE
 
Maybe I missed finding it, but was it accepted for outside of Chicago.?

Chelee 09-17-2009 09:21 PM

Re: FREE Brain MRI FREE
 
Hi Charlotte, Yes Joe said they are accepting people out of the Chicago area. I've emailed them twice & have heard nothing back yet? I think it's time I tried calling them & see if I can find anything out that way.


Chelee

Brenda_D 09-18-2009 05:36 AM

Re: FREE Brain MRI FREE
 
Still no answer here either Chelee, but I'm thinking maybe she's on vacation or something. I haven't give up yet.

Chelee 09-18-2009 12:10 PM

Re: FREE Brain MRI FREE
 
Brenda, Thanks for update. I'm not going to give up yet either...I'd really like to be accepted for this if at all possible. Keeping my fingers crossed.

Chelee

Chelee 09-18-2009 03:03 PM

Re: FREE Brain MRI FREE
 
I did call today...at least the study still seems to be up & running since the menu option 8 did explain the study and asked if your Her2 & stage III or IV. I left my information so I will continue to keep my fingers crossed. I don't think they would still be accepting names for this study if it was full.

Brenda, it was mentioned by one member here that they are considering even some woman that might be a bit out of the criteria...so don't worry about being so close to the 36th month cut off. I'm past the 36 months but I'm still going to give it a try. Worse that can happen is they will tell me no.

Chelee

Brenda_D 09-19-2009 06:00 AM

Re: FREE Brain MRI FREE
 
Chelee, I didn't get a menu option at all?
Just voice mail, leave a message.
I used this number- (773) 250-0422 Office

Chelee 09-19-2009 01:23 PM

Re: FREE Brain MRI FREE
 
Hi Brenda, When I went back over Joe's orignal post about this to read the criteria...I noticed the number that was given was different from the office number. I'll paste it below. Once you hit option 8 it asks if your Her2 & stage III or IV....then to please leave your information so they can get back to you. Good luck.

Chelee
--------------------------------------------------------------
For more information about the study, please call (773) 250-0400 and select menu option “8” between 8:00 AM & 5:00 PM CST

Brenda_D 09-21-2009 10:32 AM

Re: FREE Brain MRI FREE
 
Thanks Chelee, I totally overlooked that.
I called and left my info.

charlotte 10-01-2009 04:16 AM

Re: FREE Brain MRI FREE
 
I also have been having problems getting to give the people my info.In all probably, I will not make the grade,,, too far out.. We will see.Charlotte

charlotte 10-01-2009 04:21 AM

Re: FREE Brain MRI
 
another question... would this test encompass folks like me?I have IBC( 4th stage).. also, I am only taking tykerb and xeloda. on a daily basis.
would like to participate in this study if possible.
Thanks, Charlotte

Brenda_D 10-01-2009 04:33 AM

Re: FREE Brain MRI FREE
 
Charlotte, I left my info with them on Sept 21st and haven't heard back from them yet.

atdec05 10-01-2009 06:02 AM

Re: FREE Brain MRI FREE
 
I've also phoned & e-mail and haven't gotten a response.

Either they're swamped or they have enough people for their study.

chicagoetc 10-01-2009 04:36 PM

Re: FREE Brain MRI FREE
 
I'm guessing they're just slow. Don't tell them but shortly after Joe posted this, I called, set up a time (scheduled myself to get to work late) and then didn't hear back. They were apologetic but I decided to wait to see what happened here (before scheduling anymore time off from work). It seems like not a well organized study (or maybe it's just really slow or there are other limitations and they are just doing the best they can).

Chelee 10-01-2009 05:19 PM

Re: FREE Brain MRI FREE
 
I've called twice and left my information...& I have also emailed them. I have not heard back from them by phone or email and it's been a while since I contacted them. If there study is full you would think they would post that some where or at least have someone get back to us.

I have a brain MRI set-up for Oct. 6th at my cancer center now...so it doesn't matter to me. I thought being in the study would of been nice, but now that I've had a recurrance I'm not waiting. I do hope they eventually let people know if it's full or not. Good luck to those waiting.

Chelee

Rich66 10-24-2009 06:45 PM

Re: FREE Brain MRI FREE
 
E-mailed them with info on 10/20/09. No response.

Brenda_D 10-25-2009 05:53 AM

Re: FREE Brain MRI FREE
 
It's been more than a month for me, so I'm giving up on this trial.


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