Happy to report that Niko and Eleni Sr. came home to Durham on Wednesday, they had been in LA for 5 days for Niko’s treatment in the clinical trial. Niko had the first part of the clinical trial in December - having a biopsy and a genetically modified virus inserted into the tumor. Now, one month after the virus was administered, Niko started taking 5-FC, an anti-fungal medicine. When 5-FC interacts with the cells infected by the virus, those cells produce 5-FU (a strong chemotherapy) and die.
Niko had an MRI done before he started the 5-FC. The tumor has about doubled in size since the MRI done just before the biopsy, although the doctors at UCLA are not especially concerned about this because it is still relatively small and the Toca511 virus can only fully infect dividing cancer cells.
One concern is that the tumor is growing downwards a bit (where it will affect motor function more), although it is still primarily growing upwards and into the resection cavity.
Another concern is that there is new enhancement in the area where the biopsy needle was inserted into Niko’s brain.
This is not unheard of but it is not common either. It’s not clear what the enhancement is - it could be tumor cells, scar tissue, or virus. If it’s tumor that would obviously be bad news, but the positive side of this is that the enhancement is continuous with the main mass of the tumor, so if it’s cancer the Toca511 treatment should get the new area of enhancement too. On the downside, if the new enhancement is tumor, it means that stereotactic radio surgery, which was an option in December, would no longer be an option for Niko.
Niko is still doing well neurologically aside from some balance and dizziness issues, but steroids are helping counteract that some.
At this point, the decision is to continue with the clinical trial and 5-FC treatment and we’ll re-evaluate at the next clinic appointment at UCLA. Our next trip to LA for the next round of 5-FC is Feb 9 - 14, so if you’re in Durham and want to stop by to say hi before then we’d love to see you!
Thanks again to all of you who have written to us, come over for visits, and donated to the medical fund - we couldn’t do this without your support.
We are finally all together back in Durham and are enjoying relaxing and spending some time together. We hope you all had lovely holidays; thank you for all your wonderful messages, visits, packages, donations and love and support!
Niko is definitely happy to be home and is still recovering from the biopsy as well as the urinary tract infection he managed to get the morning before his flight from LA (!!!). He is still very tired so we are taking it easy and mostly lounging around the house- if you are in Durham, drop by and say hello!
Niko and Eleni Sr will be heading back to LA on Jan. 12th, and returning on the 18th. Because of everyone’s donations, we have managed to cover the costs of the first trip to LA, so thanks again to all of you who are helping make this journey a little bit easier for Niko. We do however have 6 more of these trips ahead of us, and although we will continue to try and benefit from flight assistance programs and whatever other financial aids we find, if you are able to contribute that would be very helpful to us.
We really cannot emphasize enough how much we appreciate the help and support from our friends and this is especially true for Niko right now. Here are some ideas of how you can make a difference for our family:
- come and visit Niko at 3102 Oxford Dr, or give him a call or a text
- donate to his medical expenses
- donate air miles by writing to me at elenimh@gmail.com - we are looking into pooling people’s miles together if there are enough.
- if you live in LA pencil in a visit with Niko and Eleni Sr over MLK weekend!
- if your main resource is time, we would welcome any information you find on financial assistance, or other support services Niko and our family could benefit from
Finally, we would like to send out a special thank you to our friends who took such good care of Niko, Kosta and mama Eleni in LA- Hillary and Matt, Eric and Charla, and Emily. You guys are the best!
Eleni Jr here updating from Durham, NC. Nick and I flew in a few days ago, and have been preparing for the triumphant return of Niko, Kosta and mama Eleni. They fly from LA this morning and arrive tonight, I can’t wait to go and pick them up from the airport! Niko is doing OK, he has been recovering from the surgery and is still a little weak on his feet, understandably.
Hope to see some of you Durhamites around over the holidays, drop by for some home made gingerbread cookies or a cup of tea!
Dr. Liau, Niko’s surgeon, came down a few minutes ago to speak with us (about 6:45pm PST). The biopsy went well and Niko was stable throughout. They were successful in injecting the Toca511 virus into a part of the tumor that had dividing cells. The pathology is still Grade III at this point, but it is hard to say because there were a lot of dead cells and radiation necrosis. We’ll have the full pathology next week.
The doctors tested Niko’s motor function and it seems to be okay (this was a concern because the tumor is so close to the motor fibers), they will continue to monitor it when we wakes up.
Niko is heading to the recovery room now, then the ICU, we’ll get to see him in about two hours (9:00pm PST).
We just got an update from operating room. Niko’s surgery started at 5:00pm PST, everything is going fine so far. They’ve started the biopsy, and after doing pathology and administering Toca511, Niko should be out of OR in an hour (7:00pm PST).
It’s been a difficult day - apparently lots of people like to get their surgeries done before the end of the year (thanks insurance companies!) so UCLA is fully booked. We got here at 9:30am, Niko was originally scheduled for 12 noon, then 1:00pm, then 1:30pm… Eleni Sr went with Niko into the pre-treatment unit around 1:15pm and came back to the waiting room close to 3pm.
This summer we had a wonderful trip to Greece with our family. We spent a good deal of time cleaning out the house and one day we came across old letters to Santa from Niko. At the very end of a list of toys (GI Joes, Transformers and so on) was written: “a fussy polar bear”.
Last night we went to see a jazz performance at the Hammer Museum with our friends Hillary and Eric. There were some artists selling their creations outside the performance, which is where Eleni Sr spotted the (polar) bear brooch now adorning Niko’s jacket, for good luck. Given that the hall in the medical center where Niko will be recovering from the biopsy is also decorated with polar bears, we thought this was a good omen.
Wish us luck today and we’ll be posting more news when we have it.
Niko, we are so proud of your strength and courage. We know you can get through this battle and we will be right at your side to support you.
Niko’s biopsy and the initial treatment with Toca511 (injecting the virus into the tumor) has been scheduled for 12 noon PST tomorrow, Friday. The procedure should take about two hours. After that Niko will probably be in the ICU, and then transferred to a hospital room for the evening for observation.
We’re anxious about the biopsy but hopeful that this treatment will be the beginning of a new hope in battling this tumor.
We’ll be checking into the hospital at 9.30am PST so if you’d like to send Niko a message please do it before then to be sure he sees it before the treatment.
Thanks everyone for your support & thoughts, we’ll post an update tomorrow when we have news.
This is an image of the tumor done with a 3T scanner. The tumor is currently 1.5 x 2.2 x 2.7cm in size. The tumor is purple, motor fibers are green, optic is yellow.
Airlines aren’t the only ones who overbook. The hospital has run out of rooms, so several surgeries were cancelled including Niko’s. The biopsy has been rescheduled for Friday at noon.
We should know tomorrow what the clinical trial schedule will look like and will post back when we learn more.
Niko and crew have been getting lots of requests from friends and family to explain the nitty gritty details of the trial so they asked me to take a stab at it.
Tomorrow, if all goes well, Dr. Liau will perform a biopsy of the tumor growing in Niko’s brain. Once a neuropathologist confirms that the tumor is what everyone thinks it is, Dr. Liau will take four more small biopsies in order to create a small pocket within the tumor. She will then inject a very neat virus into the tumor, stitch him up and wait a couple weeks for the virus to play the role of a trojan horse by inserting a new gene whose protein product converts a harmless anti-fungal drug into a highly toxic chemotherapeutic agent - but only in infected tumor cells! This targeted treatment has a ton of benefits compared to traditional chemos that act like hammers, killing healthy and tumor cells alike.
The Toca virus is a single stranded RNA molecule that encodes the entire viral genome plus one important addition – the trojan horse, but more on that later. The virus is packed into a viral envelope along with some key viral proteins that enable it to infect cells, integrate its genome into the host genome and REPLICATE. Part of what makes this approach so great is that the virus can only integrate its genetic material into dividing cells – IE the tumor.
OK, so what exactly does this Toca virus do and why are we so keen to inject it into Niko’s brain? When the virus infects cells, it releases the viral genome plus its protein goodies into the cytoplasm of the cell. There, a viral protein reverse transcribes the RNA genome of the virus into DNA. Here’s the trick though, the newly created DNA only makes it as far as the cytoplasm, but to integrate into Niko’s genome, it needs to get to the nucleus. The only way that happens is if a cell divides. Overwhelmingly, the types of cells dividing in this particular area of Niko’s brain are tumor cells. Once it makes it into the nucleus of the tumor cells, another viral protein inserts the viral DNA into Niko’s DNA (thus GMO Niko!). Now the tumor cells start copying the viral DNA which is used to ultimately make more viral RNA and infection proteins so the virus can get packed up and go forth to infect more and more and more tumor cells*.
Importantly, the engineered virus was designed to be a trusty steed. Hidden in its horsey bowels, the trojan horse carries a gene that comes from yeast called Cytosine Deaminase or CD. The CD gene encodes a CD protein on steroids because it too has been fiddled with, in this case to make the protein product tougher, more effective and longer- lasting. The CD protein converts a completely safe and non-toxic anti-fungal drug called 5-FC to one of the most potent chemotherapeutic agents called 5-FU. 5-FU kills cells dead by inhibiting a protein called thymidylate synthase that functions to make deoxythymidine – one of the four main building blocks of DNA (the T in ATCG). If cells can’t make T bases, they are unable to replicate and die.
I know the title of this post reads “GMO Niko!” but it’s actually a partial misnomer. Not all of his cells will be genetically modified by the virus – just a subset of cancer cells. So really, Niko will become mosaic GMO Niko - in other words, extraordinarily special, genetically and otherwise.
Here’s hoping the Trojan horse ends the siege and kills this thing Greek style.
