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Showing posts from October, 2018

Half Way Through Phase I

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Saturday Morning Walk We are half way through the first phase of our treatment. It consists of three phases: Boca Raton with Dr. Rosenberg getting the weekly treatment for 4 weeks of low-dose metronomic chemotherapy, high-dose Vitamin C, Tauroldine and lots of re-purposed  drugs and supplements. We go to Mexico City with Dr. Williams for the CT-Guided Intra-Tumoral injection of OX-40 and CpG directly into the liver lesions. Then back to Boca Raton to continue the phase I treatment for 6-8 more weeks. There is no treatment on Fridays. We had a low key weekend that was mostly spent at home between reading, TV, lounging, cooking, etc. We managed to leave the house on Saturday to go to the movies. We watched “The House with a Clock in its Walls." It was definitely entertaining. We got to try Shake Shack for the first time afterwards and wanted to see if it lived up to its reputation. We remain faithful to In-N-Out! At the theater. At Shake Shack. On

Another Week Down...TGIF

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A touch of Fall. Thursday is the end of our week 2 treatment. Our weekly treatment is the same. It consists of two long days of infusing Taurolidine (antimicrobial agent) over 5-6 hours, A day of high-dose Vitamin C infusions and a day of low-dose chemotherapy with Hyperbaric Oxygen (HBOT) sessions. Layla getting low dose chemotherapy on Thursday. One of three chemo drugs infused. This is Adryomycin dubbed as the red devil (luckily she only gets 10% of the dose). Our main challenge has been keeping Layla's nausea under control. Our day started at 10:30 at the clinic with a slow long infusion of Taurolidine . She tolerated it very well with the anti nausea medicine. Our day ended around 5:00pm. She had lots of energy at the end of the day and managed to make dinner and experiment with trying out some ketogenic pumpkin pancakes. Layla Making Dinner on Wednesday. Olaf helping out with Dinner. Our morning routine consists of sorting out Layla's pi

One Week Down!

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Thank you ALL for the generous donations we've received through the PlumFund . I can't  believe  we're over half way! It's truly inspiring and we all did a happy dance the minute it hit 50k. Please keep sharing it on Facebook so we can get more exposure. This treatment, like all the other ones, is off-the-charts expensive and it makes me nauseous to think insurance gets away with paying for almost nothing.  First dinner away from the house. Layla’s treatment, last week, ended on Thursday with Oxygen therapy treatment followed by an infusion of Taurolidine. She kept getting nauseous in spite of all the anti-nausea drugs. She could only tolerate half of the taurolidine that was scheduled for that day. We hope to ramp it up next week. There is no treatment Friday through Sunday. This allows her to recover on the weekend. Taurolidine day. Although Layla was not feeling great most of the weekend we managed to sneak in  a walk to the beach, a pool swim, m

From Vienna to Boca Raton

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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 emplo