“I’m baa-a-c-c-kkk…” The wheels just keep on turning on this ever-changing roller coaster ride. Within 48 hours of stopping the protocol I began to feel better. Of course nothing with me goes completely without complications. I developed edema (fluid retention/swelling) in my feet and ankles, so who knows. We do believe that these medicines brought me to where I am but also gave me some negative side effects. I have gained some weight but am hopeful it is not just the fluid retention. Yesterday was a special day. Paul and I went to McDonalds for breakfast (sausage biscuit breakfast meal), then onto Whole Foods where I commandeered an electric cart and raced through the isles. This is my first time in a restaurant in 4 months, and I use the term “restaurant" loosely. We have no idea what or why this is happening, but we’ll take it! I still don’t know how much longer I will feel this well but for today ... ”the beat goes on ...”. Love you all, Nyshie

Well, time for another update. This one is not so positive. Despite her “numbers” looking better, Nyshie herself isn’t getting better. She's using more oxygen, her appetite hasn’t improved, she's continuing to get weaker etc. We consulted with three doctors and the conclusion is that while this protocol was probably having an impact it simply wasn’t having enough of an impact to make her well. When we started this we knew that it had never been used with someone so sick and close to death. We are thankful that it has given her a few more months but it has become clear that it is not going to be the “miracle” we had hoped for. Yesterday, Nyshie decided that it was time to stop treatment and let this journey take its own course. The Hospice Nurse Practitioner was out this morning and said that the cancer has moved deeper into her lymphatic system as she is showing some areas of swelling and pain. She assured Nyshie that they will be able to control whatever pain develops, which, of course is everyone’s biggest concern. She has endured so much and fought so hard but she is ready to end this phase of the battle and let go. She feels very much at peace with her decision and we are all supportive. We fully expect she will be here for Christmas next week and maybe even New Years, as she is alert, eating some, awake most of the day and still quite connected to the world. She may even be rooting for the Broncos in the Super Bowl in January. Of course, we thank all of you for your unbelievable love and support through this seven year journey and hope your holidays are filled with love, joy, and caring. Paul & Nyshie

The journey continues. Amazingly, Nysh has stabilized and has continued to feel better. To think that just 12 weeks ago we were told that she had only a few weeks left at most and here she is able to get up, walk around the house, take a shower by herself, cook a bit, and laugh again, is truly miraculous. She is still quite weak and I am sure it will be months and in many ways years before she truly recovers from all of the surgeries and chemotherapy. Cancer is a tricky disease and of course it has a habit of adapting and mutating so where we are headed is still an unknown. Then again, it is pretty much an unknown for all of us. Our focus now is on her gaining weight and strength, which will be a slow process I am sure. All is not perfect for sure. The lung drains still give her pain although this is better and some nausea remains but also is less. She still has a significant amount of cancer throughout much of her body but it is in retreat and we can just hope and pray this continues. As always, whatever you are doing, just keep doing it. Paul

We received quite the shock this morning. Her CA125 (tumor marker blood test) dropped from 2901 last month to 833 today!! This is the biggest drop we have ever seen and is the best objective evidence we could have that her cancer is diminishing. In addition her liver enzyme value dropped by half which means her liver function is better. Now we have to get her energy, appetite, strength and feeling of well being back on track. She still just doesn't "feel well." I don't quite know what to say. We are somewhat in a state of shock and were quite prepared for the worst. She still has a long way to go but we believe that we can get there. Thanks for all the continued love, prayers and support. What ever you are doing, just keep doing it. Love, Paul

Time for an update ..

The roller coaster of course continues, but not quite as chaotic. Her weight dropped to a low of 85 pounds which frightened us. MD in Boulder thought that maybe her Pancreas had stopped producing enough digestive enzymes so she wrote an Rx. Within a few days she went to 89lbs and today 88lbs. We are very hopeful that this will be the key. We upped her Magnesium, which has been chronically low, and also leads to weight loss. In a week or so we should know much more. We will also get labs done within the next couple of weeks which will give us some objective data. If these numbers are improving we will know we are on the right track. Her appetite is improving as well as her ability to eat a bit more. Woke up yesterday wanting some venison summer sausage. Go figure. My brother John to the rescue so we are anxiously awaiting the UPS truck. Her energy is better most days but still occasionally sinks and just doesn't feel “right.” Has no pain from the cancer but still needs significant pain meds to deal with the lung tubes. Hopefully these will eventually come out.

So I continue to be hopeful. She certainly is better than a month ago even though we still encounter bumps along the way.

Paul

news from Paul ....

Well, three days now without any major setbacks. For a moment, at least, the roller coaster is running fairly smoothly. Increasing energy and appetite. Still very weak and she cannot tolerate much volume of food but some things are sounding good to her. This morning she got up, dressed, and we went for a ride through the Garden of the Gods. Didn't miss the chance to have a McDonald's sausage biscuit and hash browns. She was able to handle a few bites of each. We were gone for about an hour. This is the first time she has wanted to go anywhere in at least six weeks. Pretty amazing. Of course, as she goes so do I, so my mood and energy are up as well. We are going to start walking more to build strength. Even if it's just around the patio a couple of times. Nice to have some good news. Whatever everyone is doing, just keep doing it.

Paul

FYI ... info on the alternative treatment protocol.

Pursuing No Evidence of Disease (NED)

Non-toxic combination therapy targeting key cancer pathways.

While significant progress has been made in treating early stage cancer, over 50 percent of major solid tumors are diagnosed after invasion or metastasis has occurred. Only one-half of these patients are alive after 5 years. In the last seven years, new cancer drugs have provided limited incremental survival benefits (averaging only 3.2 months) and at a prohibitive cost. NED therapy represents a novel approach with the potential to significantly increase survival and quality of life for cancer patients.

Cancer results from deregulation of eight key or “hallmark” cellular pathways, of which four are the most therapeutically relevant for advanced disease.* Long-term survival of metastatic solid tumor patients will require the development of a well-tolerated combination of compounds that act together to halt or reverse aberrant signaling in all four of these pathways.

Existing cancer drug discovery and development is challenged by the genetic complexity, redundancy and instability of cancer, coupled with the lack of efficient procedures for development and approval of more than one compound at a time in the form of a combination therapy. Innovators must find a combination that simultaneously reverses aberrant signaling in all four key pathways and does this without significant toxicity.

NED Biosystems has identified a proprietary combination of orally available small molecules with excellent safety profiles and established ability to reverse aberrant signaling in each of these four key cancer pathways. The NED combination agents individually inhibit one or more pathways such that each pathway is hit by at least three separate molecules. This combination affords significant potential for therapeutic synergy in each pathway. The NED approach is the first to consider and identify a compound combination based on both existing clinical safety profiles and the ability to target the four most therapeutically relevant cancer pathways involved in advanced cancer.

Rebecca Lambert, Founder and Executive Chairman NED Biosystems, Inc. 


*The four are angiogenesis, apoptosis, cellular metabolism and energetics, and immune surveillance.