* THE MATCH TRIAL
* WHEN HOLIDAYS HURT
* FEBRUARY 28 – National Rare Disease Day
* Thank you . . .
THE MATCH TRIAL:
This is a Clinical Trial listed on ClinicalTrials.gov – to be aware of for discussion with your oncologist for more information. Knowledge is Power = Patient Power!
NCI-MATCH: Targeted Therapy Directed by Genetic Testing in Treating Patients With Advanced Refractory Solid Tumors, Lymphomas, or Multiple Myeloma https://clinicaltrials.gov/ct2/show/NCT02465060
This study is currently recruiting participants. (see Contacts and Locations)
WHEN HOLIDAYS ARE DIFFICULT . . . .
Valentine’s Day is coming up . . .and it may be difficult . . .if this might be the case . . .Empower yourself. How? Incorporate the special someone in your life or that was in your life . . .because that person always has a special place in your heart . . . incorporate that special someone in your plans. Light a candle to signify a legacy, a presence . . . how has your heart and life been illuminated by someone special who struggled, who is struggling, who is an inspirational presence in your life?
Journal something -“for your eyes only” – or if you want to blog or facebook to remember or reflect . . .it is therapeutic to be able to express yourself. We all gain something from the courage, strength, and inspiration imparted by a special message of hope, endurance, love, and respect shared.
Practice self-love too – pay attention to “YOU.” The people who care/cared about you – would want you to. Do something special for you. You are special!
A suggested book: “The Human Capacity to Thrive in the Face of Potential Trauma” by George A. Bonnano, PhD and Anthony D. Mancini.
FEBRUARY 28 – NATIONAL RARE DISEASE DAY –
How can you make a difference by expressing yourself on this day in your community? For the sake of a special someone, for yourself as a survivor? How can family members, friends, co workers, stand with you to do the same? Spreading the word about LMS as a designated Rare Cancer is important – to let people know that it exists, how to pronounce it /spell it, better understand its rarity in the world of cancer. Sarcomas are 1% of all cancers. LMS is between 13 – 17% of all sarcomas. There are several subtypes of LMS, making this form of cancer even more complex and research more challenging as a result. These are the talking points to be able to spread community awareness. We can all make the difference – either one person at a time or collectively in groups. Our young people can help make the difference too!
Create an event that your community can rally around to support you . . . to observe National Rare Disease Day. Talking about it on Facebook, Blogging, Tweeting . . .can certainly be a start to something more.
Call if you need support to get started: Annie 303 783-0924 or firstname.lastname@example.org. Call anytime! Always here for you in any capacity possible.
THANK YOU . . . . .
Thank you all for your ongoing support – of each other . . .
We are working hard for YOU . . .as a Patient Compass from initial diagnosis, to navigating treatment, to survivorship after treatment – guidelines on what to do, what to ask, who to ask, when to ask (through the www.nlmsf.org). through New patient and family support programs launched in 2016: LMS LIVE CONNECT CONFERENCE CALL IN – Patient to Patient; CONNECT WITH A CLINICIAN PROGRAM . . . reflective of the continued mission and purpose of the Foundation . . . and our collective focus on the future – together to support LMS specific Research.
Annie Achee – NLMSF
MOVING FORWARD TOGETHER . . .Focusing on the Future . . .REACHING FOR THE CURE- TOGETHER!