Stage IV NED crew : lets support each other
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Whoop whoop, Nancy!
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Great research - please consider signing on!
the MBCproject, a collaborative effort between researchers, doctors and patients launched at the Broad Institute of MIT and Harvard as well as Dana Farber Cancer Institute.
The URL to join the MBCproject is MBCproject.org
This group was made to keep people up to date with the Metastatic Breast Cancer Project. We respectfully ask that people share knowledge, but not solicitations for fundraising.
...The Metastatic Breast Cancer Project is a research project focused solely on metastatic breast cancer. Our goal is to generate a comprehensive set of data that will be stripped of personal information and shared with the entire research community so that all scientists can take part in the discoveries made possible by direct patient engagement. Some of the initial studies that we are launching will be:
• patients with extraordinary responses to therapies
• patients who have metastatic disease from their first diagnosis (de novo metastatic disease)
• young people with metastatic disease
• patients of racial and ethnic groups that have been underrepresented in genomic studies to date.
Our first study will focus on patients with extraordinary responses to therapies. Dr. Wagle and other oncologists have learned how to better match patients to certain drugs, how to repurpose drugs that were otherwise considered "failures", and how to design new strategies for targeting cancer. Here's a recent article, which examines how we are approaching treatments differently as a result of these important discoveries: http://ow.ly/OQ6lD. New clinical trials have already started based on the discoveries from these patients. The key here is that patients who have had extraordinary responses are very difficult to find at any one medical center, but by casting a wide net across the US, we might be able to identify enough patients who are willing to partner with us to make very meaningful discoveries.
Our research will be carried out at the Broad Institute in collaboration with Dana-Farber Cancer Institute. In addition, we are conducting this initiative in direct partnership with patients, and with a number of advocacy organizations that focus on metastatic breast cancer such as the Metastatic Breast Cancer Alliance, the Metastatic Breast Cancer Network, Avon, Living Beyond Breast Cancer, the Young Survivors Coalition, and the Inflammatory Breast Cancer Research Foundation.
When we launch this project in a few months, we will reach out directly to patients across the country and ask them share a portion of their stored tumor samples, their medical records and their voice. Our scientific investigations will start with a focused group of patients, but we will expand over time based on the patients who sign up to allow us to contact them. We would love to hear from anyone interested in this project. Please feel free to reach us at info@MBCproject.org, or on twitter, @corrie_painter and @Nikhilwagle using the hashtag #MBCproject0 -
Thanks nel! The link took me to a non-existent Facebook page. Here's the one I used:
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Caryn
Thank you!
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Thanks for the links!
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Survey done and dusted!
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Congratulations, Linda! I am so happy to read your wonderful news!!
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Scan yesterday....results tomorrow. Praying I get to keep my NED status!
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Finger crossed Texas Rose...we'll all be in your pocket during the results chat...let us know what the scan report says...Love Boo
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Thank you Boo! I will definitely report on the results.
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Break a leg, TexasRose!
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Thank you Linda!!
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Good luck, Texasrose!
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Teasros, thinking of u and praying for NED!
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Hi ladies....Just an update on my scan from last week...tumor markers have started rising but CT scan still shows clear. ONC has ordered a PET/CT to see if something is lurking somewhere....anyway...if I have activity she wants to change me over to Xeloda as my next chemo option. And that would mean I am no longer NED. Will keep you posted on the PET results...hoping to have it done this week or next. My DH and I are traveling with friends to New Orleans this Sunday for a 3 day vacation from work....hoping it is a celebration trip!
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Sending hopeful hugs and prayers!
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Texasrose - hoping for a celebration trip for you!
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Thank you Cafelovr and KiwiCatMom!
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Hugs and prayers to you Texas Rose
Rosieo
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yay Linda and everyone.......and yay me.......clear pet and have crossed one year from completing treatment! Caryn, Linda, Heidi and many others, you give me great hope for continued success!
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Screech - congrats!!!
Had a bone scan yesterday. Arthritis worse but no evidence of active mets. Almost three years of NED.
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Kiwi...Congratulations! I have added you to my "List of Inspiration"
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Awww, thanks, Screech. What a sweet thing to say.
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Way to go Screech and KiwiCat! It is a great feeling!
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So I remain NED from the neck down and I requested a chemo holiday which started in Sept. On my last scans I did have 2 small brain lesions which were treated last month, 1 treatment (long) of CKS. However I still feel terrible!!! I know its not the CKS as Ive had that before. Its post chemo stuff. I still have a lot of fatigue, my bones HURT (its not bone mets) and Im just ugh. I have had a few part days of feeling decent. While I didn't expect to run a marathon, I really thought after 2 months of no chemo id feel better than I do. Are my expectations too high?
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Hi Laura, and congratulations on NED for the neck down! IMHO, you have had a lot of treatment and you are maybe expecting a lot of yourself. Treatment is tough, it beats us up on the inside. It takes time to gather strength and move on. You are at the start of climbing back up the hill named fatigue. Take it easy, baby steps. I'm told it takes at least a year to get over chemo, but I struggle with fatigue and find it takes me longer. Try looking up tips on fatigue management - do one thing a day, eat well, lots of rest, very gentle exercise to build stamina. You've been through a lot. Listen to your body, and recover at the speed that your body is telling you.
Love Boo
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Meanwhile, in another part of the forest, I have had a PET/CT scan and the people who know these things had a chat and now I am being sent for an MRI scan. Anxiety is running amok in Boo-land.
Boo :-(
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Sending strengthening hugs, Boo!
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Hey Boo...hoping you have a clean MRI scan!!! ((hugs))!
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Good luck boo. Hope it turns out to be nothing
Congrats to everyone who got good results lately.
I had my pet scan yesterday and should get a call today with the results.
Laurie0
