Friday, November 22, 2013
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
Monday, November 11, 2013
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
Thursday, October 31, 2013
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
Friday, October 25, 2013
FYI ... info on the alternative treatment protocol.
Pursuing No Evidence of Disease (NED)
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.
update from Paul ...
Thought I would catch everyone up. The rollercoaster continues. She has some good times and some tough times. Woke up feeling better this a.m. and came downstairs, which she hasn't done much of this week, and ate half a pancake and an egg which is more than she has been eating in an entire day. Then came the crash. Very weak, needing oxygen, and a bit nauseous. Then sleep. Probably ate and did too much. I really believe we are making progress on the cancer. If we can just make progress on the food side I think she will be a different person. This has been soooooo difficult to make progress on and she clearly is starving. Wish us well.
Paul
Tuesday, October 22, 2013
from Paul ...
This is bumpier than a four wheel drive road with never ending summits. Last week I was more optimistic than I had been in a long while. Not only were we seeing subjective signs of improvement but we had some labs that although not great were encouraging. For a couple of days she was saying she felt “almost normal” except for a lot of weakness.
Then, the downhill slide happened again. Lots of stomach spasms, nausea and extreme weakness. She could not get out of bed for a few days and felt as if she was sliding towards the end. Then today she wakes up feeling somewhat better. Had some oatmeal for breakfast and pizza for lunch. She was able to walk around the house some and sat on the patio. We went to the radiologist to have her stitches out this afternoon. She still has pain from the lung drains and he says they are irritating the pleural sack because she is so thin. We were gone for about an hour and a half and that was as much as she had in her but, better than she has been lately. Her inability to eat is probably my biggest worry at this point. She continues to lose weight (87lbs. now). Just can’t get much volume of food down even when she is feeling well. I think we might be making progress with the cancer but I am not sure she will survive the starvation. Her labs do show her to be in a starvation pattern. Ben and I continue to manage and I don’t know how I could do this without him. So glad he has the flexibility to be here. Some days I am pretty exhausted and other days, more energy. A lot depends on how sick she is that day of course.
Paul
Sunday, October 13, 2013
more from Paul ...
Thought I would give Maggie a break from writing for a while.
We continue on this totally unpredictable path. Friday, she slept almost all of the day and then ended the evening with severe back pain. The pain comes from the lung drains they have inserted. If not for these she would not have much, if any pain. So sorry these are a necessity.
We all thought that this was probably the beginning of the end and expected the sleeping to be the norm. Then, yesterday she again awoke with the back pain. Lots of pain meds seemed to take care of it and she didn't sleep at all (of course college football was on). We have been able to manage her pain well and she was up and walking some.
So, here we are not knowing what to expect day to day and sometimes hour to hour. By all predictions she should be much worse than she is, so who knows. She has continued to fool them in the past so we shall see.
Go Broncos.
Paul
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