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.

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

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

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

optimistic update from Paul ...

Maggie’s communication of signing up for hospice is not as dire as many of you might think. Hospice care is comfort care and does not necessarily mean impending death. Nyshie’s mom, who is 98, was put on hospice care four years ago and they continue to be amazed that she is still with us as they predicted less than 6 months at that time because of congestive heart failure. Probably the reason she is doing so well is that she continues to refuse medication for it. Or maybe it is just the Fly genes, which also has kept Nyshie fighting all this time.

At any rate, hospice delivers many services that are useful for us — home doctor visits, daily phone check ins, IV at home if needed for pain or nausea, specialists in pain and nausea control, massage therapists, CNA for bathing or other home services, a person to come read for four hours a week and more. The reason that we did not start with this is that they at first would only offer Palliative Care, which is basically consultation and advice, because we were still on the experimental treatment. We have hospice nurse friends who live in Utah and Gunnison and they said they would never refuse this care because of that. Then they gave me the “magic words.” We told them they did not have to pay for the experimental treatment and we were picking up all the costs. Within ten minutes the Medical Director approved her hospice care. And, we are fortunate that they sent a Nurse Practitioner who wore a tie-dye dress. She said she was stuck in the 70’s, just our kind of person. They really want to give her whatever will provide her with comfort and peace of mind.  They even asked her how much pot she was smoking and apologized that they couldn't give her a marijuana card because they receive Federal Funds. Nysh, of course, has had one for a long time. She actually doesn't like the feeling so we have found a strain that has low THC (the psychological effects) and high CBD (the medicinal part).

I, with my optimistic, glass half-full attitude, and with the support and guidance of the person who is directing the experimental care, continue to be encouraged because not only is she not deteriorating she is showing small signs of improvement. She was outside, laying on a lounger longer than she has in quite a while this morning. She ate more than she has eaten in weeks this morning. Things tasted good to her. She is showing more energy. Many subtle changes that we hope indicate that this is working. We shall see, of course.  So, I am in the space of “ready to let go but not ready to give up.” 

Thanks to all of you for your continued love and support. I am sure this is a major reason she continues to be with us. 

Love to all, 

Paul

Eff cancer ...

Sorry I haven't updated for a few days.  It's getting harder to report the details.

The pain from the lung drains has subsided some.  Mom, with Ben & Paul's help, opens them and drains about 400-500 cc out of each lung daily.  This process causes her some very painful spasms. Her nausea is still the most difficult thing to control.  Her appetite is very minimal.  

She is officially in hospice care now.  They came out yesterday and filled out all of the paperwork and tried to adjust her meds to ease her nausea and pain.  She is continuing the alternative protocol, somewhat.  Hospice is okay with her doing that while she is in their care.

I am passing on all of the messages.  Thank you everyone.

Maggie

pain ... ;(

Unfortunately, they put a drain in each lung and it has been extremely painful for Mom.  Yesterday was really bad, today a tiny bit better. 

Her appetite does seem to have increased a little.

Sorry I don't have anything else to report tonight.

Love,
M