Have you Signed Up for the MBC project? Do you know what it is?

50sgirl · May 2018

I am angry and saddened by the many losses we have suffered recently. I am angry that we still have no cure for MBC. I am angry that every single day people continue to receive a diagnosis of MBC. I am angry that our voices are not heard. I am angry that people continue to die from MBC every day. I am angry that some people with MBC think that their doctors have given up on them. I am angry that current treatments fail us. I am angry about the pain and suffering our families and friends endure as they try to care for and support us. I AM ANGRY!

I need a positive outlet for this anger. I need to do something meaningful and positive. The MBC project came to mind. I received an email from them the other day inviting me to become more actively involved by joining one or more of the Patient Advisory Councils. I am going to do it. I can no longer sit on the sidelines and watch others try to make a difference. I need to begin to act, even if it is in this small way.

I am posting this now, because I think that some of the newer members on these boards are unaware of the Metastatic Breast Cancer Project. The MBC project is studying the DNA of the tumors of MBC patients to try to unlock the mysteries of MBC with the intent of finding a cure. The project is a collaborative effort of the Broad Institute and Dana Farber. This project was long overdue. The cure might not be found in my lifetime, but maybe my children and grandchildren will benefit from the work being done.

When the project kicked off a couple of years ago, there was a thread created here encouraging people to become part of the project by signing up to receive a " spit kit". Many of us did sign up, received and returned our spit kits, and signed releases that allowed the project to request copies of our records and samples of our stored biopsies from our doctors. Many of us have since received requests for blood samples and submitted those as well. All interaction with the project is done online or by mail, so no travel of any kind is necessary. It is the first project to actively invite patients themselves to participate.

If you would like to learn more about the project and maybe even participate, please go to MBCProject.org. You do not have to become involved if you don't want to, but the website will give you a better understanding of the project's goals.

I realize that this posting is long.If you are still reading this, thank you.

Hugs and prayers from, Lynne

Tina2 · May 2018

Lynne,

I'm with you. I signed up for the Education Advisory Council. I think your post will make many more aware of the MBC Project, its promise and possibilities.

Tina

Heidihill · May 2018

They didn't want my spit (as a non-US resident), but I did fill out the original questionnaire. There is an article in the NYT about the Project.

https://www.nytimes.com/2018/05/21/health/medical-records-cancer.html

50sgirl · May 2018

Tina, I signed up for the Education Advisory Council as well as the Survey Development Council. I liked the fact that participation in individual projects will be optional. That will allow me the flexibility of opting out at times if I am planning a trip or just really busy.

Heidihill, I didn't realize that people outside of the US are not eligible to participate. I think that there were Canadians who signed up, but Canada might be the only other country whose residents are included. Thank you for posting the link to the NY Times article. It was alarming to learn how difficult it is for researchers to receive and then review medical records. I was surprised that some medical practices still do not accept electronic signatures on release forms. I assume that mine does since the project has requested updated records from me without requiring a new release form. I plan to ask about it at my next appointment. If necessary, I will provide a hard copy for my MO. I hope the article doesn't discourage people from participating.

I met Dr. Waigle at an MBC conference at Dana Farber a year and a half ago. During a lunch break, he sat down next to Carol (Lovesmaltese, who has since passed away) and me and joined us for lunch. He was passionate about the project and very interested in the hearing ideas and experiences from MBC patients. His presentation at the conference was informative and engaging. He was glad to answer all questions posed to him.

Hugs and prayers from, Lynne

Kkrenz · May 2018

I just signed up....thanks for posting this Lynn! I'm ANGRY as well. Beyond ANGRY actually.

illimae · May 2018

Thanks for this 50’s. I’ve had the spit and blood kits for some time. You inspired me to get off my butt and send them in.

LoriCA · May 2018

Thanks for the reminder Lynne. I had started researching the project but you motivated me to get off my butt and sign up. At least I can channel these feelings into something that will hopefully do some good one day.

Lori

Tina2 · May 2018

I'm taking the hard copy of the NYTImes article to my MO at my next visit. I don't know if his office has released my records yet, but I do know there are errors in my chart that I consider substantive even though he may not (for example, my having mets to bone instead of mets to lungs). I hope the knowledge that these errors will be incorporated into an important database will encourage him to amend my record.

Optimistically,

Tina

Ashlyn · May 2018

With you! I signed up last summer. I'm in canada. Spit kit was no problem. Getting my blood drawn to send back has been. I've contacted MBC Project about the issue and this reminds me a solution was not found yet. Will follow up! This work is important! Lives are important!

pajim · May 2018

I signed up last week for the survey council.

The folks running this really are counting on crowd-sourcing to be successful.

They're totally on top of things, which earns my respect. Five days after I signed the consent form for blood I was at the Farber for a routine visit and they were ready to draw right then and there. And they make a point of sending regular updates and links to their results. I really like hearing what they are working on.

One more plug -- the more and wider-variety of DNA they receive the more comprehensive the results will be. With no offence intended to those of us who are Caucasian (that's me!) if you aren't Caucasian please please sign up. They (we!) need you.

rojojo · May 2018

Thank you for posting this. I signed up today.

Beatmon · May 2018

Ashlyn, re your blood tubes. Do you not get any routine blood work drawn at your appointments? The phlebotomist just drew for those when she drew the regular tubes...and took care of sending with the mail pickup.

I’m wondering how we would know if they got further information from pathology etc. Has anyone been notified about this? My blood tubes have been done at least 4 months ago....maybe longer (chemo brain...lol

50sgirl · May 2018

Thank you for your responses. Every one of us counts.

Tina, That is a good idea. I will print out the article and take it to my next appointment. I think I will try to find out if there is anything my MO's office can do to make it easier to load the file data into the database. I doubt that my MO's office would be willing to alter the format, but maybe something can be done.

Pajim, Thank you for the plug for the need for diversity of participants.

Beatmom, That is a good question. I was never told if my files and tumor samples were received. I will see if I can find out how we can tell. If we knew that our files or tissue samples were not received, we could follow up with the centers responsible for sending them.

Hugs and prayers from, Lynne

50sgirl · June 2018

Beatmom, I asked if the project notifies people when their records and tumor samples are received. They do not, but we can contact the mbcproject to find out. Here is the response.

If participants reach out to us about their status in the project, we are happy to share whether or not their medical records and/or tissue samples have been requested and received. Once we have a normal sample back from participants (in the form of saliva or blood) they get added to the queue of medical records that we can request. If we request a record and the medical records department is unable to fulfill it, we've had some success asking participants to sign a physical copy of our consent/release form, which we can then resubmit with our request packet.

Lynne

pajim · June 2018

The word on Twitter is that they see about a 50-60% success rate in obtaining the medical records. That could be considered good. Or bad, depending on how you look at it.

Grannax2 · June 2018

I'm assuming all my info got to them and hope they are using it. It was sent in in October 2017 I would love to consistently be able to read articles about their findings. Do you know how I could get to all their publications? And news articles? I wish they had a newsletter or something with summaries of there findings. Bbc.co I went on their website and found it difficult to glean much from it, complicated. I'm pretty sure they were in Chicago recently for that conference.

Yay for you 50's. You go girl.

Ashlyn · June 2018

beatmom, yes I get routine blood drawn. But in Canada you can’t just have blood drawn and sent to the states without it being billed to someone. They will not do it for me unless MBC Project makes an account with the Canadian lab to pay for it. And the will not arrange the express FedEx either. Still looking for a solution

pajim · July 2018

All, I've been corresponding with one of the folks involved in the project.

When I mentioned I live nearby [yep, three blocks from the Broad Institute] they asked if I wanted to come by, visit and meet some of the team. I could do it by myself but that's not my favorite thing. Are there other ladies in the New England area who might want to come along? I could arrange a visit for all of us. . .

PM me if you don't want to post publically. I was thinking of some time in August.

50sgirl · July 2018

Pajim, Yes, yes, yes. I would be very interested in joining you in the visit. I think there must be others who feel the same way.

Lynne

DivineMrsM · July 2018

Greetings. I signed up for this project a while back and sent the saliva sample in. About a week ago, I received an email asking to sign a consent form to get the blood draw and medical records. Am I to understand that those of you responding are okay with this? I only want to be sure I’m doing the right thing for myself as well as the metastatic breast cancer community. If the general consensus feels it is okay, I will send consent. Thanks for your input.

Tina2 · July 2018

Divine,

I am fine with this. They have my saliva, my blood and my admiration for pursuing a new way to conduct research: direct to patients. Don't know if they've obtained my records yet, but I did give my permission.

Tina

Grannax2 · July 2018

Divine. They have all of my stuff, blood, tumor and records from multiple docs. Yes, I'm ok with it but wish I knew where and when to read about their findings. I pray they will find something that will eventually help MBC patients.

pajim · July 2018

Grannax2, you can follow them on Twitter or Facebook or sign up for their e-mail list. They'll send you the results they have. They're the most open research project I've ever been part of. Or try here: http://mbc-project.blogspot.com/

DivineMrsM, I sent in the tube of blood this past week. [A long rant about how hard it was to get that tube of blood but I've calmed down a little. Planning to write a letter to Dr. Wagle about it] I thought long and hard before I signed that consent form. In the end I decided what the heck. I won't be around so long that it could come back to bite me (and I have no children).

BUT. It's your DNA and medical records. There are definitely potential privacy issues around giving researchers this information. You do NOT need to consent if it makes you feel uncomfortable. Sure, it's all 'anonymized' but as someone in the biz I can tell you that anonymization doesn't always work. Still, there are so many people with this disease that it would be hard to trace back to you. If we all had ALS it would be a different matter.

Lynne, I'll be in touch. . .

Heidihill · July 2018

Pajim, I filled up the original questionnaire but did not qualify for the other tests, possibly because all my records are in German? I will be in Cambridge with family around the 10th or 11th of August and would love to join you guys if with any luck you can arrange a visit then. Will firm up my plans soon and pm you. If they want spit or blood samples, I am OK giving that while I am there.

tinyturtle · July 2018

I participated. It made me feel like I was doing something when I felt so helpless -- It felt good knowing that if it didn't help me out, I was helping someone in the future.

The hardest was the blood draw. Quest refused to do it. It was actually a sympathetic endocrinologist who after I complained about how I wanted to do this and no one would help me, had her nurse do it like it was no big deal.

The other thing that was strange to me was that my oncologist didn't seem to know what I was talking about. She hadn't heard of it -- so I'm glad you all are here making sure everyone knows about it.

pajim · August 2018

Heidihill and I had a lovely visit to the Broad Institute/MBC Project today. They even fed us lunch! And told us that getting to meet patients was their favorite thing. We got a tour of the sequencing facility and saw where our saliva and blood samples are kept. FYI the saliva they sequence to get our normal DNA. The blood they look for tumor DNA and sequence it to see where there are differences from 'normal'.

I learned a couple of things I wanted to pass on.

First, for those people having trouble with the blood draw, contact them. They have set up a deal with Quest and they pay the bill.

Second, they can't take samples from people outside the US/Canada. It's something to do with the Ethics Committee rules. They are a 'single center' study.

Third, they love it when people e-mail with questions and they're happy to answer them. So always feel free to reply to one of their e-mails. It goes to a lovely young lady (or two) whose job it is to respond. And they really like to. They spend a lot of their time administering the project and don't often get to interact with the people whose lives they are affecting.

If you want to look at data from the study: http://www.cbioportal.org/study?id=brca_mbcproject_wagle_2017 They release new data every six months or so with a new set coming this month.

MuddlingThrough · August 2018

pajim and others, if my onc. or staff won't do a blood draw for this where else could I get it done? My onc might. I haven't asked. I have regular appointment for bloodwork and xgeva next week so I will ask.

pajim · August 2018

MuddlingThrough, just contact the Project. Reply to one of the e-mails you get or from their website. They'll set you up with Quest Diagnostics. They realize people are having troubles getting the blood draw and they want to help.

Heidihill · August 2018

Just got back home today and wanted to thank pajim for arranging our visit to the Broad Institute. They were wonderful people and the tour of the facilities made you feel like a part of medical history. Also thanks for the link to the study data. It is amazing how transparent they are going with this.

I saw this article today in the New York Times, coincidentally about another Broad study.

https://www.nytimes.com/2018/08/13/health/genetic-test-heart-disease.html

The researchers are now building a website that will allow anyone to upload genetic data from a company like 23andMe or Ancestry.com. Users will receive risk scores for heart disease, breast cancer, Type 2 diabetes, chronic inflammatory bowel disease and atrial fibrillation.

I wonder what it would tell me about my breast cancer risk. Lol. It would be worth it as well to find out about the other conditions given my family history.

MuddlingThrough · August 2018

Thanks pajim. After further reading and getting their emails, I may not even be asked to give a blood sample. I'll cross that bridge when I get to it. 😀

MuddlingThrough · September 2018

okay, I signed up and got their email acknowledgements. For weeks I've been looking for the saliva sample kit. Then I got the email saying they'd like a blood sample. You guessed it...nothing received about that either. I know I should contact them, and I will do so, but this makes me leery. I did provide correct mailing address and other info. Hopefully this just means they are very busy with a huge number of participants. ??

Have you Signed Up for the MBC project? Do you know what it is?

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