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Welcome to Janet Hulsing's Page

Help Me Live!

First, a little background on what your donation would be funding! A group of ROS1 patients ( The ROS1ders) from all over the globe have come together to form a support group on Facebook. As part of the support, we have joined to do a patient-driven research project based at the University of Colorado. Cell lines are being developed to study this rare cancer. The goal is to understand resistance and find new treatments. Your dollars go 100% to the research. This is supported through Bonnie Addario Lung Cancer Foundation along with many other patient support programs.

ROS1+ cancer occurs when a gene called ROS1 fuses with a nearby gene and swaps pieces of DNA. Thus far over 20 different genes have been found to fuse with ROS1 and drive ROS1+ cancer. When this happens, the ROS protein encoded by the ROS1 gene becomes abnormal. The actions of this abnormal protein drive the cell to behave like cancer: live forever, make many copies of itself, invade neighboring cells, and ultimately travel through the bloodstream and lymph to create tumors in other parts of the body.ROS1 cancer tends to be aggressive and can spread to the bones and brain. It is rare cancer comprising only 1% of all lung cancers. It typically occurs in non-smokers and young healthy people. It occurs in several other cancers as well. This is one of several mutations, all responding differently,often requiring different therapies

Now, ALCMI is leading a project (funded by ALCF and ROS1ders) to create new ROS1 cancer models from fresh biopsy and surgery specimens donated by ROS1ders. The tumor tissue will be implanted into specialized mice in order to create animals with human cancer cells that keep dividing and growing over time in order to study the biology of cancer and to test cancer treatments. The nature of this cancer is to develop drug resistance by mutating, thus requiring ever-changing therapies. Many of those therapies are oral meds.

In order to continue to study ROS1 + cancers and make progress, we need to continue to raise funds. Please consider donating to the ROS1ders and help them in their quest to find their next treatment and save their lives. The project is underway with several cell lines set-up!

Thanks for visiting my page. I was diagnosed with ROS1 lung cancer 2 years ago. At the time I felt I only had a few months to live. I was 57 years young, really at the prime of my life. I had always done everything I could to have good health. I had just had a new Grandson, moved to a new area, and built a new house with my Husband Tim by my side. I felt great, practiced yoga, hiked and kayaked most days, worked my part-time job as home health RN and loved life. Little did I know that I was very sick. I had a cough, just thought it was spring allergies. It wouldn't go away. I eventually went to the Doctor. I got a chest X-ray. It held the beginning of the story that told how sick I was. Within a month I was diagnosed with advanced NSCLC with brain and bone metastases. My only hope was that I had a mutation.

I found myself in the hospital within a month, unable to breathe. I figured that was it and I was a goner. I had a pulmonary embolus and a pneumothorax from a lung biopsy. After a few days, my Doctor came into my room and told me I had a ROS1
mutation from the testing they had done for genetic mutations. There was a very effective medication to treat it. I started Crizotinib in the hospital and was discharged home in a few days. My cough was gone! A week later I was Kayaking! Two months later I was Cross Country skiing!

It's been over 2 years now and I'm on my third drug, all oral meds. The Crizotinib is the only FDA approved drug for ROS1, the other 2 are clinical trials.It's been a rough road at times. I still want to live. My Grandson is 2 and a half, my yard is full of flowers and my Son is getting married next summer! I still love to hike and kayak and I hope to ski this winter. Time is running out because the drugs are running out. The ROS!ders are working hard to support the research that results in new treatments. Please help to support us with your donations! Thank you!



raised of $4,000 goal

Recent Donations

1. PLPamela Lovejoy
You are a warrior, Janet. Love and hugs to you.
2. JPJoan Power
3. MTMelanie Thornton
I think of you often Janet, your fun loving personality and the way you love to get out and do stuff but mostly I think of how very inclusive you have always been, you're so inviting and friendly. Wishing the best possible outcome for you, much love.
4. KCKimberly Z Claussen
We love you, Janet!
5. JJolene
Hope this helps you out. Love, Jolene
6. NRNancy Renn-Bugai
Praying for you Janet...Sally’s sister Nancy