Metastatic Breast Cancer Project, Cambridge, Mass.

[Hazelgreen]

I finally sent my spit test so now I'm wondering how many of you have shared data with this project.

This was the reply I received as soon as Fedex delivered my package (for free): "Dear Lucinda, Thank you for sending us a sample of your saliva. We're writing to let you know that we have received it. Our next step will be to send out a request to your hospital(s) and clinic(s) to send us a copy of your medical records. Once we have received and reviewed your records, we may also send a request to your hospital(s) for a portion of your stored tumor sample so that we can analyze it. Please contact us via this email address [e-mail] or at 617-800-1622 if you have any questions or concerns. Sincerely, The MBCproject team"

It couldn't have been easier to contribute my spit test as all I had to do was follow the very clearly worded instructions. This seems to be a very worthwhile undertaking for MBC patients. Please click "mbcproject.org/"

[Bettybuckets]

hi Hazel, thst seems so worthwhile and I hope this encouragement gets more women to send in.

[Best521]

Hi Hazel. I’m in this study. They have my tumor sample. Lord knows I don’t need it. 😉 Yes it was very easy to do and I am always happy to participate in these studies. The Broad Institute is one of the premier cancer research institutes. Glad to know I am in good company with you.

[8576]

Good that you are participating in this study. All this will bring us closer to a cure. So glad you and others are working on it.

Cheers, June S.

[Hazelgreen in reply to 8576]

You too could add your sample, June. There seems to be no age cut-off, and Canadians are welcomed with bilingual instructions, and a cover for the "Count Me In" label that is a Fedex packing slip so you can return your sample for free.

Cheers,

Cindy

[queeneee]

Looks interesting.. I skimmed the title and assumed that were referring to research in Cambridge - England! However it looks like they are accepting foreigners... I will let you know.

[MJ_Michigan38]

Hi Hazelgreen! So glad to hear you’re part of this project. I submitted my saliva sample two or three years ago, and like you said, it was so easy. The more people living with MBC who participate, the more likely they are to find the key to solving this terrible disease.

I remember Dr. Nancy Lin of Dana Farber saying that one reason a vaccine for Covid was found so quickly was largely due to the number of study participants—something like 30,000 to 40,000. An MBC study is lucky to have 300, and so our studies take 8-11 years before the treatment makes it to the market (if at all). Most of us will not survive that long. If we all participate in these studies which cost us nothing but a little time to fill out a survey, we are helping ourselves and each other. 💖 Thank you for your contribution!

[Hazelgreen in reply to MJ_Michigan38]

Thanks for your thanks! We need to do whatever we can to encourage each other to aid well-meaning researchers! I counted the number of advocacy groups indicated as supporting this work - 35! presumably all American. I just wish all the funds raised for advocacy groups would be spent on research studies.

It astounds me that the annual Terry Fox "Marathon of Hope" in Canada has now raised $850 million (since he died in 1981), and nothing on its website indicates what percentage of its funds have gone to basic MBC research. I'm afraid most of the money raised simply supports the organization and its board of directors...

[MJ_Michigan38 in reply to Hazelgreen]

I know exactly what you mean. When I found out how little of what the Susan G. Komen Foundation collects actually goes to research for MBC, I decided to make it my mission to inform others. They say “race for the cure,” but almost none of that money goes towards looking for a cure. It’s very disheartening. But I believe in this study. 💖

[kokopelli2017 in reply to MJ_Michigan38]

hi MJ. drives me crazy too. disheartening indeed. us mbcer's make up 30% of the total of women with BC. as I'm sure you know....3 out of 10 women diagnosed with BC go on to be diagnosed with MBC. and let's not forget the women diagnosed de novo.

and yet we only receive 5% of the Susan G. Komen Foundation's donated funds. so injust. unbelievable.

I tell my family and friends to donate instead to METAVIVOR. great organization run by women with MBC and 100% of donations go directly to MBC research. check them out. metavivor.org. I wish more people knew this.

carole XO

[MJ_Michigan38 in reply to kokopelli2017]

Hi Carole! Metavivor is my org of choice too, and my family and friends donate to them. I like Living Beyond the Breast too—they have great support for our stage, including online conferences a few times a year.

I was diagnosed denovo, and I know what you mean. Our stage IV, whether initially early stage that progressed or advanced from the start, is largely ignored by the majority of breast cancer orgs. They like to skim over us, but that does no one justice. In 40 years, they’ve not reduced death by breast cancer by more than 1% or so. That’s because the money isn’t going towards research for our stage. At this point, no oncologist can ensure that an early stage breast cancer patient won’t progress to stage IV, no matter what their treatment regimen is. That means they don’t know what the cause of our progression is, and they certainly don’t know how to stop it. Our type of cancer is one of the leading causes of natural deaths in women worldwide, and yet, Komen wants to make us cute with pink costumes and call us “warriors,” minimizing our fight and acting as though it’s up to us to survive. 🤨

[kokopelli2017 in reply to MJ_Michigan38]

hi MJ. I was off-line for a couple days. I hear you. and sad to say, you are right on all. as for the 'pink brigade'....I could go on and on...it drives me crazy too🙄.

[Best521 in reply to MJ_Michigan38]

Imagine how powerful the study could become if everyone on this board participated in the study. MBC thrivers from across all countries. It would simply be breathtaking ❤️

[PJBinMI]

Thank you so much for this info! When I noticed that you are in Canada, I teared up! The good kind of tears, so happy this study isn't restricted to your southern neighbors! Plus we're almost the same age (I'm 76) I'd forgotten about this study and was able to update my info with them. I'd sent saliva sample but not gone any further, so I've spent about the last half hour updating.......... One of the best things about this site is being able to share info like this, IMHO (or not so H, LOL) hugs & love, Pam

[Hazelgreen in reply to PJBinMI]

Hi Pam,

It is terrific that Canadians were included, and so ably!! As I mentioned to June above, "Canadians are welcomed with bilingual instructions, and a cover for the "Count Me In" label that is a Fedex packing slip so you can return your sample for free". Really, every detail was covered. I'm going to read the publications the group has written so far.

Many Hugs,

Cindy

P.S. My HO is not so H either😜...

[hurricaneheather]

i’ve been a participant for years. i’m glad you are now a participant.

[Hazelgreen in reply to hurricaneheather]

Thanks, Heather. I wonder how many years the group has been collecting data...

[hurricaneheather in reply to Hazelgreen]

i think it started in Oct 2018, which is when i inquired and became a participant. per an email dated Aug 2021, "Thank you for your support of the MBCproject, which is part of the Count Me In initiative. To date, over 6100 people have signed up for the MBCproject. We’ve received over 2100 saliva kits, 1700 medical records, and 600 samples."

[diamags]

Is it with the Broad Institute? I enrolled about 4 years ago as I felt is was for a good cause. They have all my info; but the part I really, really liked was that they share their findings (aggregate findings, not individual) with any academic institution that would like them. That was extremely important to me. I'm so pleased you're part of it!

[Hazelgreen in reply to diamags]

Best521 confirmed that it is with the Broad Institute in her reply above.

Cheers,

Cindy

[mariootsi]

What will a spit test show?

[Hazelgreen in reply to mariootsi]

According to thermofisher.com/blog/life-... "DNA, RNA, and protein biomarkers associated with cancer, periodontal disease, autoimmune diseases, viral and bacterial diseases, neurodegenerative diseases, and cardiovascular diseases have been identified in saliva. With the growing use of genomics, transcriptomics, proteomics, and other “omics” techniques to study saliva, the discovery of others is on the horizon."

[Tam-56]

I’m in! Thank you for puttin a spot light on this important study.