Fast change in the cancer world

On September 14, 2015 by Michelle Love

Things change so fast when you’re dealing with cancer.

Dr. Kaplan talked to BJ and I about “options” two weeks ago. There are two new therapies that would be possible options for BJ if they couldn’t get him to MRD negative. One was Blinatumomab (just received FDA approval Dec. 2014), which has been successful in lowering MRD. The second is an absolute breakthrough for pre-B Acute Lymphoblastic Leukemia (ALL) patients, called CAR-T cell therapy, and only available in a clinical trial at approved centers. The CAR-T study began at the Children’s Hospital of Philadelphia (CHOP). After seeing so much success, the research study was opened up to other centers, and Duke Medical Center is the closest to us. The caveat to being able to join the CAR-T cell study was that BJ couldn’t have received Blinatumomab, and his MRD had to be around 10%. We listened to everything Dr. Kaplan said, and felt comfortable with his plan, although BJ and I discussed later how exciting it would be to get that new treatment. We left being grateful that there were other options for the future if BJ relapsed again, or if the next chemo cycle still wouldn’t get his MRD down less than 0.1%.

Last week, even though his lungs didn’t look so great on the CT scan, we were excited about the news of BJ’s MRD being down to 1%. The anti-fungal medication was increased, and we would go back Friday 9/11 for another CT scan, and then be admitted for either the high dose Ara-C/Fludarabine, or Blinatumomab. The path of therapy would depend on what his lungs looked like.

However, plans would change before the 11th. Dr. Kaplan called to tell me that results from the bone marrow aspiration on 9/3/15, showed BJ’s MRD had gone back up to 8%. This news was a game changer. The leukemia is very aggressive, and obviously hard to treat. It went up 7% in 10 days.

My heart sank…but Dr. Kaplan kept talking.

He said now, with this MRD result, BJ would be a good candidate for the CAR-T cell clinical trial, and the doctors at Duke wanted BJ to start the process very quickly. Dr. Kaplan believed that this would be BJ’s best option at this point. They wanted to see him at Duke right away. CAR-T cell therapy involves collecting white blood cells by pheresis, sending them to a lab for ‘processing’. The ‘processing’ is where BJ’s T-cells will be altered to attack the cancer cells, and given time to multiply. After a few weeks, BJ will get his T-cells back, and they will begin their search and destroy mission. After the infusion of his cells he will have high (104-105 degree) fevers, feel extremely fatigued, could have lowered blood pressure, or even cytokine release syndrome. He will be in the hospital until he recovers from the symptoms from his own body fighting the cancer. BJ will be the 2nd patient to have this treatment at Duke. A sweet little girl, also from Charlotte, just completed this therapy with amazing results.

We are so excited, with renewed hope for the future, and are just overwhelmed at how fast everything changed! With CAR-T therapy, BJ will not need a bone marrow transplant…and everything that goes along with it…like whole body radiation, and resulting fertility issues, the scare of graft vs. host disease, 45 some-odd days in the hospital, and the next 100 days quarantined at home, the risk of life-threatening bacterial and/or fungal infections and viruses while he’s neutropenic for so long. His hair will grow back sooner – his eyebrows and eyelashes are already beginning to grow again. He will be able to return to life as normal much sooner…9th grade, sports, friends…and not worry about cancer for a change! Those new, modified T-cells will always be there, and if one tiny cell starts to go rouge, it’ll be annihilated! How’s THAT for kicking cancer’s ass!!!

So, we – being die-hard Carolina Tarheels fans – are at Duke. We’ve been told that we’re in good company actually – most of the staff here are Tarheels fans as well. BJ says you can forget about him converting. (Shelly, Joe, Gautam)…. But yes, we absolutely know Duke is an excellent hospital, so he’s going to be well taken care of here. 🙂

When everything seems to be falling apart….just maybe it’s actually falling into place.

#KeepPounding #ChildhoodCancerAwareness #CureForBJRound2 #Fighter #BJStrong #MollysKids #ChildhoodLeukemia