T-Cell Therapy Patient Story: Nicole Gularte

Written by Emily Whitehead Foundation co-founder and Emily’s dad, Tom Whitehead.
Photo L to R: Jessi Ayoub (EWF Board Member), Kari Whitehead, Nicole Gularte and friend Lia Duncan)


Nicole Gularte is 33 years old and has relapsed with leukemia 7 times. Over the last couple of years she has been speaking in California about Emily’s treatment in between her own cancer treatments at Stanford. Nicole had her T-cells extracted, modified, and frozen awhile back in case she needed T-cell therapy. I had been messaging Nicole to encourage her to keep fighting.

On August 12th she messaged me that she was worn out, had stopped treatment three weeks earlier, and that her doctors had given her 4 to 5 weeks to live. She told me that this time her relapse was in her spinal fluid, which would disqualify her from the T-cell therapy trial, so she had contacted her doctors to tell them she was stopping all treatment. I asked Nicole what she had done since stopping treatment because I was getting strong feelings that she was going to get her modified T-cells. She told me that since stopping treatment she had been baptized and had attended several events where people prayed for her.

I told her that it was hard for me to explain, but just like when I knew Emily would survive her treatment, I had a very strong feeling that she would get her modified T-cells if she kept fighting. I explained to her that I have learned to pay attention to the whispers in my life and that if she would keep fighting we would do anything and everything to help her.

“I told her that it was hard for me to explain but, just like when I knew Emily would get through her treatment, I had a very strong feeling that she would get her modified T-cells if she kept fighting.” – Tom Whitehead

Nicole messaged me not long after that and said ‘Thank you for inspiring me, I have now decided to get my blood checked one more time at Stanford’. She went the next day and that evening she and her mom called me crying and told me her blood came back cancer free. She went back to the doctor the next day and had a spinal tap…her spinal fluid came back clear of cancer. This meant that Nicole now qualified for the T-cell therapy clinical trial at Penn in Philadelphia, but she had lost nonrefundable flights because she was too sick to fly.

With help from some very special people, we were able to reach out to American Airlines and they donated a flight to get Nicole and her friend Janelle to Philadelphia so Nicole could get her T-cells. One of the doctor’s called me and said ‘Tom, I heard that you inspired Nicole, and I am amazed that she got results back cancer free.’ He said ‘I don’t know how to medically explain the clear blood test but I want you to know, I BELIEVE.’

Last month, Nicole received her modified T-cells and spiked a high fever due to the cytokine storm that can occur with this type of immunotherapy treatment (just like it did with Emily). She almost needed a ventilator but doctors administered tocilizumab (the same medicine that turned Emily around when she was so sick). It also worked for Nicole and she was feeling much better by the next day.

I received a message from Nicole when I was in Boston attending the International CAR-TCR Summit (a T-cell therapy conference). She told me that before she had the T-cell therapy, she had only been able to see in black and white in her left eye for the last two years due to leukemia cells in her eye…but that now she could see in full color! This was our first sign that the T-cells might be working. Nicole stayed in Philadelphia for several more weeks to recover and flew home to California earlier this week. On Thursday she received the news that her spinal fluid test came back cancer free. Then, on Friday, her doctors said her bone marrow was also free of cancer – the T-cell therapy worked! 

During Nicole’s time in Philadelphia, Kari happened to be speaking at a conference in Philadelphia, so she was able to meet and have lunch with Nicole and her friend Lia, and EWF board member Jessi Ayoub. Nicole, Lia, and Jessi also had a chance to attend Kari’s speech! You can follow Nicole’s journey on Facebook at Fighting Fire with Fire – Nicole’s Journey.

Kari and I receive calls and emails from patients from around the world more than once a week. We are working very hard to continue expanding the Emily Whitehead Foundation while we both work full-time jobs but there just never seems to be enough hours in the day! Talking with patients who need help now to survive always comes first. I hope to get the time to continue to update on other patients we are currently helping. Many patients still find out about these innovative treatments such as T-cell therapy too late.

We will continue to raise awareness for this treatment and help patients as much as we can. When Kari and I speak at events we always tell the story of how all of your prayers and positive thoughts helped our family get through Emily’s treatment. To continue growing our foundation we could use any help you can provide such as holding fundraisers and joining The Villagedonating, sharing your story, or sharing information from our website or these blog posts, so we can continue to reach other patients. Together we can make a difference!

For all the families who fought with us – we think of all of you every day especially those courageous warriors who cancer took from us. You inspire us to never stop trying to make a difference. I will continue to listen to the whispers and act on them in the hope that some day many more families will be changed for the better because their loved one survived just like our Emily.

We plan to continue sharing other patient’s stories here on our blog, including a patient who will receive the T-cell therapy this week!

Listen to the Whispers / We Believe!
~Tom

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By | 2017-03-18T21:59:31+00:00 October 8th, 2016|Patient Stories|5 Comments

5 Comments

  1. K. Rivard December 5, 2016 at 4:33 pm - Reply

    Immunology therapy ( Opdivo) has given my Dad (& our family) a lot more time together. He was diagnosed July 2014 with stage 4 liver cancer (melanoma). Drs gave him 3-4 months. The first round of immunology did not work so they sent him home. Just 3 weeks later Opdivo was available post clinical trials. Amazing drug! I believe we are closer than ever to curing all cancers. Everyday is a gift!

  2. Marian Moore November 15, 2016 at 3:57 am - Reply

    That is such good news. I just wish we had known about this treatment in September 2012 when our son Marcus ran out of options for treatment. We had just travelled to London from Ireland to take part in a trial drug called Blinatumomab which was not successful for him. We had no other options and was told he had a few weeks to live. I wanted to ask about America but the doctors were telling us it was too late. We had €100000 in cash and would have raised more. I just wish I had shouted from the rooftops that we wanted to find out more and continue to fight. We donated the money to local charities to help others fighting Cancer. Marcus Moore Requiescat in Pace. 05/12/1987 to 13/10/2012

    • Nicole Gularte January 29, 2017 at 4:03 am - Reply

      Marian,

      Thank you for sharing this with us. I am truly sorry for your loss (It hurts my heart as I type this). I would give my life to save a child. I would trade places in a heartbeat, but that is not how God works. I believe we are all here to serve a purpose and although nothing can bring Marcus back, he has and will continue to serve his purpose.

      When Tom and Kari were trying to help me get into the CAR T trial at U Penn back in July 2016, I had no other options and I lost ALL hope. One doctor from Stanford presented the Blinatumomab trial information to me as a last resort. Although it has been available in Europe for some time, it had just been approved by the FDA for a Phase I trial in the U.S. I researched the results from all patients in the European trials from Phase I through Phase III (I presume Marcus was in one of these). The news was discouraging when the statistics, based on my condition, offered a relative 5% survival rate. I felt so hopeless and wanted to give up, but Tom would not permit.

      I am very fortunate to have this family in my life. After helping me access treatment at U Penn, I learned that the FDA had “black boxed” the Blinatumomab drug. It was designated as a serious safety issue after reports revealed that 73% of patients experienced severe, adverse reactions, including death. Without support from the Whiteheads, I would not be here. As I attempt to piece my life back to normal, the Whiteheads continue to reach out and bless me with their presence. I realize, more than ever, how important it is to be kind, grateful, and giving.

      Life works in mysterious ways and although it is not fair, God has his reasons. I extend my gratitude to you and your brave son because, I understand (as an avid researcher), how important clinical trials are in paving precision medicine. The loss of your son has spared so many others – potentially my very own life! For this, he is a true hero and that shall never be forgotten. Marcus may not be with us to keep up his own fight, but I can assure you that myself, along with Emily Whitehead and her cancer fighting warriors, the fight will never end. We will continue to fight for him and all others lost to childhood cancer. And we will fight until we activate the cure for everyone.

      God bless

  3. Linda Salas October 10, 2016 at 11:08 pm - Reply

    Wonderful story….My brother is alive becsuse of immunotherapy OPDIVO…Stsrted in Jan 2016 and is doing great….

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