woman-591576__480Blog Posts / Facebook Posts /  Input from Cancer Support Groups – participants, leaders, PhD psychologists, Psychiatrists –  all weigh in . . . join the conversation!


4/7/2019-“The World is richer than it is possible to express in any single language.” -Ilya Prigogine
“Since being diagnosed with ULMS in 2015, my entire world has changed. It is like I have entered into new terrain that is very much like going into the unknown. To keep myself grounded and not fear based, I am in the garden each day, as the nourishment it provides is healing on so many levels. Now that I am not traveling out as much, I can understand and appreciate the small micro-movements of the plants as they pass through the seasons and express their dimensions in shape and color. The healing energy of this world gives me the patience and confidence that I can walk with the diagnosis and come out on the other side.” MSH


for Annie (1)

4/3/2019- As a 13-year survivor of leiomyosarcoma,  I strongly encourage the newly diagnosed patient to advocate for yourself throughout your treatment journey. Find a sarcoma center near you if at all possible, and be prepared with your questions once you make it to your appointment with that all-important sarcoma specialist. Stand ready to hear the facts concerning your particular situation, even if they are difficult to hear.  It will be very helpful to have your caregiver with you, not only for that “extra set of ears”, but for the strength and support that you will need along the way. Once you’ve completed your treatment, survivorship care planning is crucial. Your oncology care team can help you and your caregiver to come up with a plan to rebuild your quality of life.

For our future, The International LMS Research Roundtable will bring researchers from around the world to discuss LMS-specific research, for more precision in clinical trials for LMS patients. Putting together a standard of care for us beyond NCCN guidelines will be important for community providers that do not see a high volume of LMS patients.

It may be hard on some days to remember that we have much to be thankful for, in spite of all we are going through to fight this disease.  I can tell you that gratitude for the little things has carried me through many a dreary day, and I hope that is the case for you as well.-Lea Custer

12/2/2018- My life has certainly changed since I have been taking MCT oil and getting acupuncture! It has made all the difference and I am not at all tired like I once was…I can go and go now on my full medical dose. You might like to look into it as an extra boost with anything..it is coconut medium chain triglycerides and it is something that you can add in your coffee or tea in the morning and then you can add in more later if you like. I just use 1 tbs. a day so far. –  Marlana

9/23/2018- Hi All –  As a caregiver for my husband since 2011,  I have “grown” into my role and responsibility.  I had to go through several steps to get to where I am today.  I started with panic, fear, sadness and then full-blown advocacy to find out about LMS as quickly as possible.  I made it my goal to educate myself so that I could ask the best questions possible during my husband’s appointments.
Being a part of the NLMSF,  I have found a new voice –  to help others as much as I possibly can.  This is my goal and daily focus –  to help anticipate the needs of others,  talk directly by phone to help, and be as proactive as I can possibly be.   I love meeting everyone at our multiple annual patient-family – caregiver programs.  I have had many great relationships built from ongoing telephone contact.  Recently visited a patient that we have been in touch with for three years-  in the UK.  My husband and I continue to help her from Colorado, to try to get her through her difficult LMS journey with multiple surgeries and a few setbacks.  But we are with her all the way to see her through.
It has become a very rewarding and important experience for me to be able to try to help in any way possible anyone who contacts us.
Blessings to all,