February 2012
3 posts
back in Durham
Hi everyone,
We are back in Durham after an exhausting trip from LA. It went pretty well, just long and tiring.
We got to see Niko’s neuro-oncologist at UCLA on Monday and reviewed the scans with him. He was encouraged that although the tumor is larger, it is not dramatically larger (this is what counts as “good news” in our book!), and he suggested that it is possible that the...
good news
After a worrying MRI from January, a lot of unpleasant symptoms (dizziness and double vision) since then, and a PET scan that confirmed the tumor was “very hot”, we were all very anxious about Niko’s MRI today.
So we were surprised when our (amazing) nurse, Stacey, greeted us by saying “I have some good news for you”. For a minute none of us dared ask what the good...
Heading west
It’s that time again - Niko, Eleni Sr. and I are heading to LA tomorrow for Niko’s next clinic appointment at UCLA. Niko will have an MRI on Friday (at 7am!) and start his second round of 5-FC, then we’ll be flying back to Durham on Tuesday. We’re looking forward to seeing some of our good friends in LA this weekend too.
This will be an important appointment, because we...
January 2012
1 post
5-FC
Hi everyone,
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...
December 2011
13 posts
Back home
Hey folks, Eleni Jr here with a quick update.
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...
Going home
Hi all,
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...
Another update on Niko - biopsy is done
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...
Update on Niko
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...
Biopsy and 1st treatment scheduled for 12 noon...
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...
Biopsy rescheduled for Friday
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.
-Kosta, Niko, Eleni Sr
GMO Niko!
From Tamara, our resident science correspondent…
Hi friends,
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,...
We need a little help from our friends... and your...
Many of you have asked us how you can help. We are asking for donations from friends and family if you are able to, and for you to ask your friends, families and communities to help us too. This clinical trial will involve a lot of travelling to and from LA, and we are anticipating a lot of costs which we will not be able to sustain. How to donate We have added a ‘Donate’ button at the top of...
Onwards, Westwards
As the holidays approach, our family finds ourselves yet again heading West in the hope of something new and unknown that holds the promise that Niko may get to live a normal life in the longer term. As I write this, Niko, Eleni and Kosta have just arrived in LA where Niko will be screened to enroll in a clinical trial for Toca511 at UCLA. Weighing up this option versus the treatment offered by...
Update on Niko's health and how you can help
Dear friends,
A few days ago we found out some bad medical news. As you know, Niko had surgery in January 2010 during which the doctors removed about 70% of a high grade glioma (grade III anaplastic astrocytoma). That was followed by an experimental vaccine treatment, radiation, and chemotherapy until September 2011, when there were no more detectable signs of active cancer from MRIs and PET...
November 2011
1 post
Recurrence
Hi everyone,
I’m writing to let you know about the results from Niko’s latest MRI scan which are unfortunately not the news we hoped for.
There is a new area of enhancement that’s outside the area of the resection cavity - the area that part of the tumor was removed from nearly two years ago. “Area of enhancement” can mean any number of things on an MRI – it can be scar tissue, or swelling – but...
October 2011
1 post
Good News
At my last Dr’s appointment I received the good news that my cancer is in remission! Of course, this doesn’t mean the cancer is completely gone, that will take years to know. But I am enjoying this moment and keeping my fingers crossed for the next MRI in two months.
I won’t have to get chemo or go the hospital every week for blood tests for the first time in three years.
I...
March 2011
1 post
http://thismachinekillscancer.tumblr.com/post/35865... →
Remember my friend Shayne? Good news:
thismachinekillscancer:
Let’s cut right to the point. On Sunday, Shayne got the reports back from his most recent scans. His oncologist couldn’t wait until Monday to tell him that he was 100% disease free. Not, the tumors have shrunk. Not the results look good, but the cancer is gone.
100%!!
We’d never expected…
November 2010
2 posts
No Avastin for now
Hello friends, Last week Niko wrote about having to decide whether or not he would start treatment with Avastin. The last MRI showed a little swelling and some areas of enhancement, which might have been tumor growth. The doctors at Duke wanted to be safe and start Niko on Avastin just in case. The problem is Avastin isn’t a walk in the park, it has serious side effects and potential risks....
Bevacizumab?
I saw the oncologist today. The MRI shows some slight swelling in my brain. It could be caused by tumor growth, scar tissue, or inflammation related to the tumor breaking down (in other words responding to treatment). They don’t know what’s causing it of course. My doctor suggested I add Avastin along with my regular chemo drug. It helps inhibit angiogenesis, or new blood vessel...
October 2010
1 post
Carbo-loading
If you thought this post would be about carbohydrates you were wrong. Very, very, wrong. Unless you’ve discovered a pasta which works as an alkylating agent in order to interfere with the growth of cancer cells. In which case, congratulations. That sounds like a much more pleasant delivery system than intravenously. Yesterday was my third round of Carboplatin (hence the hilarious wordplay...
August 2010
1 post
Stable
Hello friends,
This is Kosta writing. Good news! Niko’s latest MRI scan is stable. Niko’s doctor at Duke is happy with the results and says that the initial indicators are positive. After all we’ve been through this year, we were quite anxious about the appointment, so it’s a big relief to get this news.
To recap really quick where we’re coming from: for 8 years...
July 2010
1 post
Going platinum
Hi all, Eleni Jr. & Kosta here-
Today Niko starts a new chemotherapy regimen, Carboplatin. It’s a one hour in-hospital treatment where Niko gets an IV of the platinum-based drug along with some anti-nausea meds. He’ll be getting these injections every month for the next year. The goal is for the chemo to help the vaccine in fighting the remaining tumor cells. Niko’s doctor...
We were just looking for a result...but ended up...
Long time no blog, there hasn’t been much to say. Now there is. Good news! In the 2 months since my last MRI the latest scans shows ‘decreased enhancement’. That basically means there are less bright spots on the MRI than there used to be (bright spots indicate tumor). My oncologist was very encouraged, he thinks things are “terrific.” Going into this appointment both...
June 2010
4 posts
Continental CareForce
Hi folks, Eleni Jr here.
I’m in town for a short visit with the family before getting back to London to finish my Master’s. It’s hard being here and knowing it’s only for a short amount of time. Cancer doesn’t seem to like taking vacations!
One of the ways I try to help even when I’m far away is by trying to access services and resources for my family- and one...
My view of the last 6 months
Six months ago, in December 2009, Niko had just completed 1 ½ year of chemotherapy and was doing relatively OK – building up his physical strength, his social life started to improve, and he was getting better, despite all the seizures which never really left him.
We were planning for Niko to take a break from chemotherapy when we walked into the oncologist’s office in December.
However Niko’s...
I've got the strength of millions
(of dendritic cells)
just got my second shot (of three) and will be headed back to Durham on Friday.
So far on this blog I’ve mainly discussed the nuts and bolts of my treatments. There’re a lot of emotional aspects to this disease that are hard to come to terms with and very difficult to put into words. I plan to write about them eventually, but I doubt I’ll do better than this powerful post by...
May 2010
2 posts
Where: UCLA
Why: First injection of the immunotherapy vaccine trial
When: May 18
Who: Me
Questions? Comments?
Leukapheresis really takes it out of you...
…and runs it through a machine, and then returns it to you minus some white cells. I know it sounds delightful. But after 3 hours of serving as a middleman for blood I started to get whiny. Boo to nausea, a localized heat on one leg and ear pressure. The DVD player wasn’t working, fortunately AMC was showing movies on the teevee. In this case, K-9. If for some reason you don’t...
April 2010
2 posts
Update & Thank you
Dear Friends, It’s been three months since Niko’s surgery at UCLA, and time has passed by incredibly slowly and quickly at the same time. Slowly, because Niko underwent daily radiation and chemo treatment for 7 weeks, which he finished at the end of March. Quickly, because all of a sudden we are preparing for another trip out west to get going on the clinical immunotherapy vaccine...
New News
Today I had an appointment with my oncologist here at Duke, to discuss the MRI I just had. Basically he says it is mostly pretty good, although there are two spots (a few millimeters in size) of concern on the scan. He says it is not possible to tell from the MRI if they are recurrent growth, atypical scar tissue, or inflammation from swelling. I’ll have a PET scan on Friday to help get a...
March 2010
4 posts
done cooking
Yesterday was my last day of radiation therapy. After 33 days of receiving a daily dose of 180 centigray (cGY) - for a total of 5940 cGY - the baking is complete. As I’m sure you are all aware a “gray” or Gy is a dose of radiation equivalent to one joule of energy absorbed per kilogram of tissue. I’m surprised it doesn’t come up more often in day-to-day conversation. ...
I can't complain
Wait, I have just been informed that due to unique circumstances I am in fact entitled to whine. Hooray! Finally a lifetime of grumbling is paying off.
I had a crappy day last Saturday, I hope you’re excited to hear about it.
It started with some strong double vision shortly followed by dizziness and quickly capped off by nausea. It turns out synergy is not always a positive force. Bad...
Hair Today, Gone Tomorrow
Apologies for the lame pun, I couldn’t resist. As you probably guessed, the radiation is finally taking it’s toll on my beautiful locks. Last Friday, Kosta noticed a bald spot about the size of a quarter on the back of my head. The next morning I woke up to a pillow covered in hair and a large patch on my head with a suspiciously similar amount missing. Fairly quickly there was a good...
February 2010
3 posts
Niko Cup Recap
The tournament went great! ”The Knights Who Say Ni(ko)!” prevailed against “Niko’s Arsenal” in the last minute of a strongly contested final.
There was good weather, a strong turnout, and of course, “The Beautiful Game.”
Many thanks to all the friends, organizers, players, and the Duke men’s soccer team for their support. It was wonderful to see...
Come to the Niko Cup Against Cancer
For the past few years I’ve been playing pickup soccer every Thursday and Sunday with a group of friends. I haven’t been able to play in the last year, but my goal is to get back out on the field by the end of this year. While recovering from surgery in LA I found out that my fellow players had organized a soccer tournament to help raise funds for my medical expenses. The tourney is...
It's good to be back.
A photo from my welcome back party
It has been great to see everyone and get some rest. Tomorrow I begin seven weeks of radiation therapy in combination with chemotherapy. The radiation sessions will be every Monday through Friday and will take about 20 minutes each. Most of that time will be spent making sure I’m positioned correctly. The doctors made a mask that holds my head in place...
January 2010
25 posts
I've never watched Escape From LA
I wonder how it will match up against today’s trip
Got a good night's sleep for the first time in...
What a difference it made not trying to stay still in fear of disturbing sutures
Last week in LA
From Eleni Sr
Out from hospital and our final week in LA.Lots of appointments, first of all removal of staples, seeing eye doctor,oncologist, radiologist… So, busy and recovering until we leave on 31 Jan for Durham.
home (sort of)
We’re finally out of the hospital and back at our temporary apartment in Palms. We’re glad that last chapter is behind us, and look forward to seeing everyone in Durham in 10 days. More soon,
Kosta
relegated to the 3rd division
Dr. Liau met with us today after the UCLA Brain Tumor Board discussed Niko’s case and the final pathology on the tumor. The final pathology report indicates a grade III anaplastic astrocytoma. All the slices of the tumor from the frontal lobe came back as grade II tumor, while parts of the tumor in the temporal lobe came back as grade III. Although there was more tumor in the temporal lobe,...
if you were wondering about that "Robot Hands"...
… I’ve added a caption that should explain what’s going on.
Latest Report
Here are the notes my brother took from our meeting with Dr. Liau this morning:
Everything is going well so far. The biggest risk with surgery was loss of motor function, and it appears that Niko has not lost any motor function. One concern is that there is a blood clot in the cavity where the tumor was, but that is not dangerous per se. Niko will have a CT scan on Tuesday to follow up on this....
this is the first day it hasn't been 70° and sunny...
Hi friends,
First things first: it’s raining in LA, which is a new and strange sensation to us, since we’ve grown accustomed to the warm weather and blue (if smoggy) skies. Might as well rain now though since we’re not leaving this hospital just yet.
We’re all doing okay. Yesterday was the first day where nothing too scary happened - that was nice. There have been some...
the decadron series, continued
Eleni Jr here. Just a quick update for you all. Niko is still stable and he is recovering well. He is able to walk to the bathroom or sit in a chair with the help of a nurse (in case he falls- he has plenty of leg strength though). He does have some loss of balance sometimes though.
Yesterday he slept very deeply most of the day, after being given Vicodin for pain, Zofran for nausea, a 4th...
the nuts and bolts of immunotherapy vaccine trial
Hi y’all, Tamara here (Kosta’s sweetie), Many of you know why Niko decided to come to UCLA for his surgery. To recap, the Harlans initiated a relationship with Dr. Liau in December 2008 in order to get a second opinion on his treatment approach. Dr. Liau recommended surgical debulking of the tumor (that is, to take out as much as possible). When the December MRI scan showed heightened...