Fighting Stage 4 Leiomyosarcoma one day at a time

Hello Everyone,

Thank You for visiting, I initially started this blog to keep family and close friends updated on our journey to Houston Texas, to visit with Dr. Burzynski, a world renowned doctor, who specializes in cancer.

A year and a half ago, MB was diagnosed with stage 4 Uterine Leiomyosarcoma and given no more than a year to live.

MB is only 50, she hasn't seen any of her kids get married or have babies. She still has a thirst for life, three kids and a Husband who absolutely adores her. My sister is 23 and youngest brother only 17. We still need our Mama Bear. If you are, or were, blessed enough to have an MB like mine, who has always loved you unconditionally and supported you, you will know how we feel. Nothing can replace a mother's love. Nothing.

Because MB's cancer is very aggressive, we had no time to waste. The very same day the doctor told us to prepare for hospice, MB and I said, "Fu*k That!", Hospice is a dirty word at our house.We started applying to the Burzynski Clinic as soon as we got home from the doctors appointmet, after 3 days of collecting medical records and sending faxes we were finally accepted.We never took time to think, we just acted. No more than a week and half after we were told to go home and prepare for death, we were on a plane headed to Houston TX in search of life and a second chance. We've left California and our family during Thanksgiving.

Even though the treatment is crazy expensive and we are away from home during the holidays, this is still the best decision we ever made. Sometimes you have to bet big to win big!

We aren't the Kardashians, we are just the Vargas' and we are going through the "realest" hardest battle of our lives...This is our story....If you'd like to start reading from the very beginning click on November, on the lower right hand side of the page and the very first post is the "Adventure Begins"

Tuesday, November 29, 2011

The Doctors, or as our Oncologist at Kaiser calls them, "The Charlatans"


Dr. Burzynski Jr. and Physicians Asst. Ana, that cute gal in the middle y'all should know by now, lol

The primary complaint from people that go to the clinic and don't pursue the treatment is costs, plain and simple. Not everyone can spend 30,000.00 American dollars on a 3 week visit, and then continue to spend anywhere from 5-20,000 a month for the meds to continue the treatment at home. Those who have a good insurance company are able to get these medications covered when they go home and they usually do just fine. People who have Kaiser are fucked and have to fight tooth and nail to find a doctor, who will even prescribe the meds within the Kaiser system, no prescription from a Kaiser doctor no insurance coverage.

Why is the cost so high? Well,if you actually think about it, this is what oncologists are charging cancer patients, the only difference is that when your insurance is paying for it, you don't see the enormous bill you just see the co-pay. Burzynski charges for the treatment up front because a lot of insurance companies don't cover his services, his treatment is still considered "experimental" .

The doctors at the clinic have been nothing but nice to us. When we first got there we sat down with, Burzynski Sr, Jr, Dr. Yi and Ana. They explained the gene targeted treatment and how it works to kill the tumors from all sides. Let me clear something up, we were never told MB would be cured, we were only given hope and that they would try their best. MB and I appreciated the honesty.

The gene targeted approach makes sense to me, in essence what  these doctors are doing is testing your blood and tumor samples, what they look for is genetic markers that tell them what receptors and or channels your tumors are using to grow. When they've identified these receptors and or markers they begin to prescribe off label medications to suppress the channels that are allowinng the tumors thrive. For example, MB has a rare uterine cancer and there are only 3 chemos FDA approved for her type of cancer. Because her tumor samples and blood work expressed receptors present in liver and breast cancers the doctors here prescribed liver cancer and breast cancer meds for MB. Right now MB is taking a combination of 5 FDA approved cancer drugs off label. She is also taking Dr. B's famous antineoplastons. Dr. B is in stage 3 of FDA approved clinical trials for the antineoplastons.

I don't know about you but this sounds pretty damn scientific, logical and effective to me. Why aren't places like Kaiser doing this? Well, as you can see it takes time money and know how to put all this stuff together and Kaiser really isn't interested in investing that much on a patient. The Caris testing (thats where they test each individual tumor for its genetic components) is 5,000 dollars. You think Kaiser wants to run that test on every single cancer patient? It wouldn't be cost effective.

Back to the Doctors at Burzynski, Greg, Burzynski's son, has been super nice and helpful. Last week he spoke to us for about half an hour explaining the treatments, why they were doing them and letting MB know that in about 2 to 3 months after another pet scan we would see where  we were. He was hopeful but never gave us false hopes or illusions. When MB asked him what her chances of survival were, he said that "traditionally" speaking they were slim to none. Then he made a very good point, stating that their treatment is new and has'nt been done on enough patients like her to get a clear percentage. His answer was basically lets try and we will see how you do. He couldn't tell her she was for sure going to live BUT he also didn't tell her to go home and die. That is what sets this clinic apart, they always give you a fighting chance and that has a lot to do with a patients survival.   He even recomended some books for MB about the power of the mind and positive thinking. I have pretty good instincts and never have I felt lied to or bamboozeled here. Some may argue that Dr. Bs success rates aren't very high, well gee he tkes in all the Stg 4 terminally ill patients, the fact that he saves any of those is a miracle in and of itself.

I've said it before and I'll say it again, I wasn't born yesterday, I realize that this may not work, but what if it does? The way I see it, we have nothing to lose but money and thats ok because everyone knows that money grows on trees;)

2 comments:

  1. Money is simply a means to an end…..it's there to spend on something….shoes, clothes, car, a house….why not to save a human life? I know I would be selling Tamales right next to her if I could and will as long as I can see that beautiful smile in person some day!! I believe that the human life is "priceless" and I would even offer to work at the clinic to try and get treatments if necessary? I would be on a "street corner handing out fliers" if necessary!! As soon as I have the money I am ordering Suzanne Somer's Books and will be starting to Eat Better and this story inspires me to Be Better and Feel Better !! THANK YOU MAMA BEAR FOR YOUR STORY OF SURVIVAL AND INSPIRATION - <3 Teresa <3

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  2. Thank You for your daily words of inspiration and support;)

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