From Vienna to Boca Raton

Following our return from Vienna, Layla’s tumor markers started creeping up at an alarming rate. We were confused with the trend not understanding whether it was a reaction of the immunotherapy or there is malignant activity. Dr. Kleef requested we get scans as the tumor markers behavior is in direct contradiction with what we have seen in Vienna.

The scans revealed metastatic lesions in the liver with stable disease in the bones. The Vienna immunotherapy was effective in halting the progress in the bones but was not enough to prevent the metastasis to the liver. Our research remains focused on immunotherapy as our viable long-term solution to Layla’s situation. Traditional chemotherapy could yield a temporary solution where it’s only a matter of time where the cancer would come back more aggressive and resistant to all the available options. Our research led us to Dr. Rosenberg in Boca Raton, Florida and Dr. Jason Williams in Atlanta. 

Dr. Rosenberg is a scientist that employs various techniques to halt the growth of the cancer Such as low dose chemotherapy that also acts as an immunotherapy agent along with Vitamin C infusions, hyperbaric oxygen treatment and several repurposed drugs and supplements that create the right environment for the cancer to vanish. 

Dr. Jason Williams runs the Williams Cancer Institute. His specialty is intra-tumoral injection where he will inject the tumor in the liver with immunotherapy drugs. He used to utilize the immunotherapy drugs that were infused in Vienna (yervoy and opdivo ) into the tumor creating an immune response that allows the immune system to go after the remaining lesions however he is now utilizing two new drugs that are going through the FDA approval process following a successful  Stanford mouse study .

Our plan is to start the low dose chemo treatment at Dr. Rosenberg for four weeks, get the intra-tumoral procedure done in Mexico as the drugs are not approved yet in the US and then return to Boca Raton to complete the treatment. The goal is to have no evidence of disease or to stabilize the cancer at best and then hold it off using re-purposed drugs.

We found out about Layla’s liver metastasis on Tuesday October 2^nd. It took us under two weeks to formulate a plan following ton of research and interviews of several specialists. We got to Boca Raton on Saturday October 13. It is beautiful here. The temperature is in the mid 80’s and we have several pet lizards that greet us when we come home. We have given them names. If you have an aversion to lizards, this is not the place for you!

How many lizards can you spot?

We found a home in Highland Beach within a walking distance from the Atlantic Ocean and less than 10 minutes away from Dr. Rosenberg. We created a comfortable place in our rental with healthy food from all the great stores we have grown accustomed to. 

Our little home away from home.

Monday was our first day of treatment. We met with Dr. Rosenberg. He is as personable and knowledgeable as he was over our telephone consultation. He runs Advanced Medical Therapeutics where he treats cancer using approaches that have shown a lot of promise in ongoing studies but will probably never be part of the mainstream treatment as our USA system is not set up for that since cancer has a standard care approach. Layla got an infusion of Vitamin C. 

Tuesday, she is scheduled for hyperbaric oxygen therapy (HBOT). There are a lot of conflicting studies on the efficacy of HBOT  in cancer treatment but there is an agreement that cancer cells tend to be more aggressive and metastasize  faster in the absence of oxygen. HBOT is not for the claustrophobes. You are fully enclosed and hooked up to oxygen similar to being under 10 feet of water in a swimming pool. The treatment was followed by four hour long infusion of Taurolidine , an anti-bacterial agent that has shown a lot of promise in cancer treatment. Layla has received that previously in Vienna.

Hyperbaric Oxygen Therapy (HBOT)

Our day on Wednesday started with HBOT again at 9:30 am. This was followed by our first low dose chemotherapy infusion. It is a mixture of three different chemotherapy agents at 10% of the dosage of the traditional one infused over an hour. She will be receiving that once a week.

Let the healing begin.

Low Dose Chemo Cocktail. 

The weather is changing today. We are expecting rains in the afternoon and over the next few days. Our routine consists of the clinic, a trip to the grocery store (Trader Joe, Costco, Wholefoods) and some home cooking. We are maximizing the treatment and ensuring that Layla is eating healthy and taking her supplements. 

Staying on track with healthy home cooked meals.

Layla has a great support network through some amazing friends. Several of you have asked me how you can help through this period. Her friend Amy has set up a “PlumFund” (similar to GoFundMe with less fees) to help us with the medical expenses as they are not covered by insurance. Here is the Link.

Words to live by hung in the clinic.

Thank you for all your messages, phone calls and well wishes.

Hello from Olaf.