One Last Update😢

Although many of you probably already know the ending of our update, I feel it is important to explain how we got from normal treatment in Vienna to losing our Layla in three weeks, since you shared our journey.

We left Vienna on Thursday, February 27 to Berkeley, California with the promise of a new treatment, Side Effect Free (SEF, pronounced 'safe') Chemo.  Due to several immune related adverse events and other challenges, we needed to pause immunotherapy for several months and we had been assessing SEF chemo as a non-immunotherapy backup plan should this ever happen. Our time in the San Francisco Bay Area was very short lived as Layla was getting very weak and was developing upper respiratory issues- with symptoms progressing significantly each day. She had developed Lymphangiosis carcinomatosa, a very rare form of metastasis from breast cancer that spreads to the pulmonary lymphatic system and eventually severely impacts the lungs. We also learned that the pulmonary embo…

Perfect Storm!

The last two weeks brought with them a series of  events that tested our strength and brought with  it  a perfect storm of life threatening conditions . Layla ended up with a blood transfusion, lots of scanning, testing, weekend hospital stay and unwanted additional findings.
Without elaborating on the details and still unclear on the cause and effects of the disease vs the treatment, Layla was diagnosed with a pulmonary embolism and an autoimmune hepatitis that has caused a lot of symptoms mimicking liver failure. the extensive imaging led us to a lesion in her brain that had surprised us all and explained the cluster headaches that she was getting. 
So where are we now with all of this?
We are thrilled that Layla’s liver is slowly recovering from the hepatitis . According to the imaging, the immunotherapy treatment in Vienna held the cancer stable in the liver. We are not sure how long she has had the lesion in the brain , the last brain MRI she had was in April of 2019. 
we aborted imm…

Half Way Through!

We are half way through! Layla survived fever week and is plowing bravely through different hyperthermia treatments. The weather has not been too cold. It's been warmer the last two years (according to the locals). We are not complaining 😃. The staff at Dr. Kleef's clinic has requested that we all wear masks as prevention against the influenza virus in Europe. It makes hanging out at the clinic a little tougher than usual. We are excited to have my sister Cathy visiting. Our friend, Matt, also arrived this week for treatment from Boston. We met him on our second trip here, and we've been in touch ever since. We've met some amazing people along the way.

Layla has fever week #2 next week. So this week is a little more relaxed.

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…