Fight Like A Girl.

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. Willia...

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 Col...

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 o...

There is a new generation in town! 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!) sp...

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 i...

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 ...

Our new pet outside our hotel room Update: We are thankful to our medical team , our complete remission lasted 6 months. We are continuing treatment with Doctors Kleef, Williams and Rosenberg.  Please refer to updated blogs! We are in disbelief. Four months ago, I broke the news to Layla about the scan results showing that the cancer was now in her liver with too many lesions to count. It was a miserable day with lots of tears and pain.  Layla looked at me and asked: "Does anybody ever come back from mets in liver?, I am not ready to die!". The odds are super slim. While we were all trying to come to terms with the new escalated level of the disease, Nina was already looking at all the options that she knew of and what was the best way to turn this nightmare into a blessing in disguise. With the metastatic disease now in her liver, Layla became a candidate for the OX40 Intra-Tumoral injection (Stanford Study) but needed treatment to shrink the extent of the...

Happy New Year. We hope you all had a great holiday. We spent our holidays with Uncle Fuad and Aunt Terry in Atlanta. We lit sparklers to convince the sun to stay on Winter Solstice, we built gingerbread houses, we saw a Christmas play, we opened presents, we ate a little too well and best of all hung out with family and were showered with lots of love! Sparklers on Winter Solstice Great Time with Dad Gingerbread Houses Christmas Dinner Thank you Nacho and Dagmar for our new Olaf Blanket Nina and Wes both left home. Layla and I are back in Boca Raton. We downsized to a studio at the Residence Inn close to the clinic. It's a comfortable 500 square feet space that has a kitchen and everything else we need. The hotel even has a small gym and I started using the treadmill again as a way to start building intentions for 2019. Nina trained me well before she left Next week is our 12th week of treatment. We are scheduled for a pet ...