Cancer CAR T Update

It has been some time since my latest blog post and I owe an update – to myself (since writing is healing) and everyone else. So, here it goes…

In April, I had my six-month post CART22 follow up (which included a bone marrow biopsy for MRD testing) along with surgery to remove an inflamed lymph node. The lymph node had been bothering me for some time and eventually grew and became very painful. After some testing/imaging, the team and I decided it would be best to surgically remove the entire lymph node. The recovery process from this surgery has taken some time, but I am slowly healing and most of the pain has subsided.

On April 25th I received my MRD test results (for the CART22 trial) as well as the results from the lymph node that was removed just a week prior. Unfortunately, both results came back positive for leukemia.

Now, I suspected it might be a relapse given how my body was feeling – I was hoping for the best, but prepared for the worst. In the weeks following the news, I have been working diligently with my team at UPenn to find a new treatment plan. Lucky for me, the CART22 trial I was in last November has acted as a bridge (for me) to one of the latest and greatest clinical trial protocols – a CD19 and CD22 targeted CAR T therapy.

This dual CAR T therapy has two receptors (versus the single receptor) that recognize and attack cancer. After CAR T therapy, sometimes the modified T cells with this receptor falls off and a relapse will occur. This is the case with both my CART19 (Novartis CTL019 protocol in 2016) and my CART22 (Penn/Novartis protocol in November 2018).

Researchers are working around the clock to determine why the T cells do not persist in some patients as long as we would like. New and advanced CAR T trials offer a great opportunity for researchers and patients – by advancing clinical research and offering a longer, more durable quality of life.

The reality is, CAR T therapy has given me nearly three years of life that I otherwise would not have had. I consider myself very fortunate to have a place in these new trials and I will continue to fight as long as there is HOPE.

The benefits having two receptors targeting two antigens means it is less likely that leukemia will escape two CARs. This should allow me enough time to be in remission – which is what I need in order to make the next decision:

  1. Proceed to transplant OR,
  2. Hope that this CAR T is sustaining

The issue right now is:

  • You must be in remission to receive a bone marrow transplant.

My dilemma is this:

  • Bone marrow transplant will take 1 year minimum, offers terrible side effects, is lengthy in recovery time, and has a 30% success rate.
  • Alternatively, CAR T therapy takes less than one month, offers very little side effects, no recovery process (or very little compared to the alternative), and also has a 30% success rate.

Given the facts above (and I have always asked myself this question), do I want to move on to transplant after this latest CAR T therapy?

Ultimately, I need to do far more research before I make a decision. For now, my team at Penn is running a search to find possible matches in the bone marrow donor database to see if I will have potential matches. For now, I must focus on tackling my cancer and getting through this next part of my journey.

Last Friday, my Penn team collected my cells through a process called Apheresis (see photos). It will take around four weeks to modify my cells to express both CARs – CD19 and CD22. Once that process is complete, I will enter the hospital to prepare for my third CAR T cell therapy treatment.

Stay posted for updates!

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No Pain, No Gain

CAR T-cell Therapy Follow-up Visit – Month Three

This past Thursday was my three-month post CART22 checkup at Penn.  It was not the most exciting of my recent trips – especially since the appointment required a bone marrow (BM) biopsy procedure. Although I have had many of these over the years, I have never really gotten used to them. And this latest one was particularly rough.

What normally takes about 20 minutes ended up turning into a 40 minute procedure. A build up of scar tissue (from all of my previous biopsies) made it nearly impossible for the practitioner to access the deep part of the marrow. This made the procedure challenging for the practitioners and I think it made us all a little nervous.

Bone marrow biopsies are an important part of clinical research because they give insight to the deepest understanding of what is really going on in the blood cells. They are usually required before, during and after entering a clinical trial. A decent size specimen is needed because the marrow is eventually divided up and placed in tubes. These tubes go to various labs for research. One of the most crucial tests is for minimal residual disease (MRD). In my clinical trial, I am required to have these biopsies throughout the first year after completing the trial. One reason for this process is because research shows relapse from CAR T-cell therapy often happens within the first year.

I am sharing this experience because I want others to understand the undiscussed components that a cancer diagnosis gives a patient – both during and after treatment. It seems to never end; and for me, with each and every bone marrow biopsy, I am reminded of all the terrible things that I have had to get used to over the years.

On the flip side, each bone marrow biopsy also reminds me of how strong I have become, and how close I am to finally being near the end. It is also worth wile knowing that this type of research will ultimately benefit society.

As much as I would like to avoid the next biopsy or procedure, I have to remind myself that this is part of the clinical process. And it is a process that has given me a lot of love and light in life recently. Truthfully, enjoy watching science and spirituality intertwine as we progress in achieving our ultimate goal – a cure for cancer.

The test results from this latest biopsy will be a major milestone – not only for me, but also for the study.

I will be discussing the MRD results with my research team at Penn this Thursday, February 28th. Stay tuned for my next post where I will share these results 😃🙏🎗

The following photos have been provided help to illustrate what a bone marrow biopsy procedure might entail:

Bone Marrow Biopsy Procedure

 

Bone Marrow Biopsy Kit

 

World Cancer Day – Switzerland

WORLD CANCER DAY

February 4th is a day where people around the world unite in an effort to raise awareness about cancer, and work together to make it a global health priority. Far too many lives are lost to cancer – many of which can be prevented through educating, advocating and raising awareness.

Kari Whitehead and I were invited to speak at GE Life Sciences, Cell and Gene Therapy division in Geneva, Switzerland this past week. The goal: to share our personal experiences with T-cell immunotherapy, and to inspire those who have dedicated their careers to these life-saving treatments. To bring this reality full-circle, it often helps to see (or hear) the end result – the patients and the families who have been given a second chance.

On behalf of the Emily Whitehead Foundation and World Cancer Day, I felt compelled to share our experience.

Upon arriving in Switzerland, Kari and I had a very warm welcome from our friendly team at GE. Excited to have the opportunity to share with and thank those who have impacted our lives, we looked forward to being a part of this event.

An entire afternoon was arranged for us to speak and participate in Q & A with some very profound professionals in cell and gene therapy. For Kari and I, it was a blessing to engage in such forward-thinking conversation. We addressed some problems – like why these new and advanced therapies are not made more quickly and available for the many sick patients in desperate need. With 8 million lives lost to cancer each year (and climbing), there are plenty of patients who can lead and fill new and existing clinical trials. So, what is the hold up? Action. We need to take action. There are many components that go into the expansion of cell and gene therapy products – just as there are many components that go into expanding awareness for such.

In an effort to help our communities gain knowledge and access to cellular therapies, the Emily Whitehead Foundation was created. The foundation has provided community support and continues help and inspire many.

World Cancer Day is a perfect opportunity to spread the word and create global awareness for such therapies. The 2019 theme for World Cancer Day is I can and I will. I can and I will continue to advocate and raise awareness – and I ask all of you to help by doing the same – for we are all affected by cancer in some way.

Please visit the Emily Whitehead Foundation for more information.