Vienna 4.0 With Olaf and Princess Anna in Tow

We are back in Vienna to continue treatment with Dr. Kleef. Layla started treatment on Wednesday and will be undergoing fever therapy with interleukin II next week. Following our last Vienna trip (Sept-November), Layla had two additional immunotherapy treatments. She had three IV injections of Coley's toxins at the St. Andrews clinic in Mexico followed by one of three intratumoral injections of immunotherapy in Mexico City by Dr. Williams. The treatment was aborted due to Layla's sudden onset of pneumonitis. The downside of immunotherapy is the possibility of autoimmune diseases as the immune system can go in overdrive.

Contrary to our liking, immunotherapy treatment was halted and Layla's pneumonitis was eventually resolved through a 4-week course of steroids. The blood work during this period did not look good because the tumor markers were increasing and they are currently at their highest. The blood test pointed to possible progression so we decided to have a Pet/CT s…

Merry Christmas and Happy New Year!

It is hard to believe we had started this blog over a year ago! your support has been integral to our success. We are now back home on a forced six week treatment holiday. the first week of December in Mexico City, Layla was scheduled to receive three separate intra-tumoral injections (Monday, Wednesday and Friday).  Dr. Williams injected her liver on Monday with few immunotherapy agents that are designed to attack the cancer at the injection site as well as the other cancerous lesions throughout.
On wednesday, when he was ready to do the second injection, he noticed on the scan as all injections are performed under CT guidance, an inflammation in her lungs that he diagnosed as pneumonitis which is an auto immune disease and a side effect of the immunotherapy treatment that could have been caused by the use of anti PD-1 checkpoint inhibitors. we have to abort the immunotherapy treatment for six weeks. Dr. Williams treated Layla with a heavy dose of steroids and she was eventually disch…

Mexico City, Third Time is a Charm!

We were thrilled to be home, for few days at least, and get to spend Thanksgiving with the family. We left Vienna following 9 weeks of immunotherapy. The latest petscan (taken upon our return from Vienna) showed improvement, and the tumor markers are down by 30%. The scan along with the tumor marker trend validated the treatment.

There is a clear need for additional treatment. We are now in Mexico City undergoing another multi intra-tumoral injection with Dr. Williams (The Williams Cancer Institute) and are we are planning to return to Vienna for six weeks of treatment in January. The idea is to keep the immune system engaged to maximize tumor cell death. We are also using Coley’s toxins that are available in Mexico in between the Intra-Tumoral injections and the Vienna treatment. We had a series of 3 injections prior to our leaving to Mexico City and Layla had a great response. Coley’s toxins is the first form of immunotherapy from the late 1800’s invented by Dr. William Coley. Here i…

Happy Birthday!

Today is the fourth day of our 8th week of treatment. The treatment consisted of a modified fever week with three intense sessions of heated therapy (5 hours long each) and one long whole body hyperthermia. Layla's response has been great in terms of fever. Her fever spikes after treatment and stays high for few hours and eventually dies out at night. She will recover this weekend as she prepares for an actual original fever week that's similar to the one she did the second week of treatment. So how do we spend our day? We are mostly at the clinic Monday through Friday and Layla typically has treatment ranging anywhere from 5 to 8 hours. The clinic is filled with hopeful patients with different kinds of cancer.  The diverse group of patients includes teenagers, young fathers and mothers as well grandparents. We share a lot of information and provide support for each other. The tumor markers have come down a little bit and so have the liver enzymes. We are counting fully on th…

Cranking up the Heat!

We dedicate this blog to the Lebanese people across the globe. Short of being able to physically be there, we lend you our full support and admiration hoping for change to come soon your way.

Today is the third day of our 6th week of treatment. We consulted with Dr. Kleef and agreed that we would benefit from more treatment. We would like to reduce the tumor burden and ideally get into remission.
 Layla is feeling well in general. We managed a quick weekend getaway to Salzburg, the birth place  of Mozart and the setting for the Sound of Music. We also visited a gorgeous touristic place almost out of a fairy tale called Lake Hallstat. Both Salzburg and Hallstat are gorgeous cities in the Austrian Alps.

The highlight of our past week was a family visit from The US. My sister Cathy, my niece Nathalie and baby Sargento (due April 8th of this year who was the size of an eclair according to Nathalie's baby app, Can't wait!) spent few days with us. We also had a surprise visit from …

Lions and Tigers and Bears Oh my

We are into our 4th week of treatment. A lot of you are already familiar with the treatment Layla had in March and August of last year at the Kleef institute. This one is very similar with minor additions and at least three weeks longer. We are looking at seven weeks of treatment that include two fever weeks. Layla already had her first fever week on 9/23/19 and is scheduled to have the second one on 10/28/19. The fever is caused by a drug called interleukin II. Fever is our friend. It wakes up the immune system and reminds it to attack those unwanted cells. The trick is to induce the fever gently without wreaking havoc on the body.

Layla is tolerating the treatments pretty well, feels good in general and has a very positive attitude. It is difficult for us to measure progress in terms of tumor markers and scans as immunotherapy treatment can cloud these results.

We are enjoying living in the City. Vienna has been voted the most livable City in the world for the second year in a row.…

Vienna in the Fall

Our last update was on January 17, 2019 where Layla was declared in remission with no evidence of disease. Clinical remission is defined when the PET/CT scan does not detect any cancer.  Unfortunately remission does not mean cancer free.
We continued treatment in Florida by tapering off the low dose chemotherapy regimen Layla was on from weekly to every other week to every three weeks and then once a month. Layla’s tumor markers began rising again in April.  The cancer has mutated and developed resistance to the existing therapy.  We have tried multiple adjustments to bring it back down but none were successful. In July, Layla had a pet scan that showed active cancer in the liver and the bones. The extent was less than last year but enough to change the course of treatment. We still focused on immunotherapy as a long-term cure so we consulted with Dr. Williams who is still honing down the immunotherapy OX40 injections and he proposed a multi injection approach by adding an agent that…