Vienna in the Fall

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 turns the tumor more susceptible to immunotherapy. The injections took place under CT guided scan on Monday, Wednesday and Friday in the hospital in Mexico City in early August. We injected both the bones and liver this time, hoping to get a response in both.  We also had a biopsy performed on both liver and bone and sent it to Bojar labs in Dusseldorf, Germany for analysis.  Layla reacted well to the treatment and developed a fever overnight and had a lot of bone pain which is indicative of the immunotherapy taking effect. Upon our return home, Layla’s tumor markers kept trending upwards which worried us and got us to move the scan up. An ideal scan is performed 6 weeks after immunotherapy treatment as it could give a false positive result. We performed the pet scan on 9/12/19 and it showed lots of activities in the bones, liver and new ones in the lungs.

Layla remains in good health and free of any symptoms which is in contradiction of the scan and the lab results. We do not want to take any chances. The biopsy results showed some changes in the tumor but still estrogen receptor positive. We got in touch with Dr. Kleef (who we had kept in touch with throughout the treatment and we credit his initial treatment as a precursor to the success of our remission) and left to Vienna on Sunday, September 15 and started treatment on Tuesday September 17. We are scheduled for five weeks of treatment. 

The treatment consists of local hyperthermia (applied to liver and lungs), whole body hyperthermia, low-dose checkpoint inhibitors (Opdivo and Yervoy) and fever week induced through Interleukin-2 infusion. Layla has been through similar treatments twice at Kleef.  The first one in March 2018 resulted in regression in the bone mets and the second one in July 2018 that we believed stabilized the liver mets, that we did not know existed at the time, during the treatment.  Her liver mets rose sharply after the treatment and was put back in remission with the treatments of Dr. Rosenberg and Dr. Williams. I am replacing the table with a graph of our tumor markers which we are tracking.  We still believe in the power house of the doctors that we have: Dr Ralf Kleef, Dr. Mark Rosenberg and Dr. Jason Williams and our honorary doctor Jane McLeland. the author of how to starve your cancer.  they are all aware of Layla’s treatment and journey. 

We appreciate the support from all of you!

The balance of $19,232 that was left in the plum fund as of 1/16/19 was all used up along with over 140,000 dollars that covered the maintenance phase and the new treatment in Mexico.

Thank you,
Layla and her elves

Olaf (always with us) checking out the view

Local Hyperthermia

Mild Whole Body Hyperthermia

Covered with Love 

Checking out Old Town in Bratislava