As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.

Our Patient of the Month for November is Jodi Lang. Here is her story:

GISTory

Jodi Lang Patient of the MonthMy name is Jodi Lang, I am now 55 years old and I live in Florida. I have my own business which is Remote IP Docketing and Paralegal services.

In July of 2017 I was having pains in my back, so my doctor sent me for an MRI. When I received the results I was told that besides the herniated and compressed discs they “saw something else” and they believed it to be GIST (which, after all I know now is a miracle that they even knew what that was).

I was very anxious to learn I had cancer and all I wanted was to get it out of me. I went to a surgical oncologist and scheduled my surgery.

In the meantime, I had learned about Life Raft Group and signed up. I received a call from Laura who asked me a bunch of questions. During the call she advised that I NEEDED to see a specialist and could not just use any doctor. I was hesitant to start the whole procedure of testing again, but I did listen – AND I THANK THE LORD THAT I DID.

I went to Dr. Trent (and surgeon Dr. Livingstone) in Miami. After my initial visit my husband and I were completely convinced that that is where we needed to get treatment.  Although family and friends recommended I get a second opinion, Laura was the one that convinced me – THANK YOU LAURA. My biggest advice to anyone diagnosed with GIST is to see a GIST specialist.  I had my surgery a few days after hurricane Irma – I wasn’t even sure until that day that I was going to be able to have the surgery because there was no power in surrounding areas and the surgeon could not get out of his driveway due to a fallen tree. The surgery went without a hitch, small intestine resection with negative margins. After the mutational testing I was grateful to learn that I just had to be on Gleevec for three years and the chances or recurrence would be 5%. Great odds! Of course, Gleevec does not come without its own challenges…nausea, sleepiness, bruising, lack of sleep etc. but Dr. Trent has been able to prescribe enough “secondary” medications to keep the side effects at bay and bearable. Two years down and one more to go!  I have been going for scans every three months and have been extremely lucky to have been NED for each.  I know many of you reading this have not been as fortunate as I have, and I wish there was more I could do to help.

MOTTO
My motto is “it is what it is” – you need to take what is given to you and make the best of it – life is too short to let the things you can’t control take over.

ADVICE
SEE A GIST SPECIALIST

HOBBIES
My work keeps me very busy but in my spare time I attend a lot of meet up groups to meet new people in Florida since I have only lived here for three years.

Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.

Criteria for Patient of the Month

  1. Patient must be a member of the LRG Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has a GIST/PRiME account
  5. Patient must agree to provide consent to share his/her story to our GIST community on our website and social media

Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org

read more member stories