Talked to person in charge of trial/Wound Update

I just talked to Don Payne this morning. He is the CEO and President of Nanospectra, who is fronting the trial that we are trying to get an exception for. He is open to accepting Jeff, but he needs to talk to Jeff's oncologist about the medical logistics to see if the oncologist thinks it is safe for Jeff to attempt this trial.
According to Don, if that all goes well then we have to find a surgeon in the area that the hospital review board would approve and then we would have to have the willingness of the surgeon to perform the procedure. This means that Jeff could do this trial locally or maybe at KUMED!!!! That was an extra bonus I wasn't expecting.
There are still lots of hoops to go thru, but we are done with the first one.
Also, another miracle on Jeff's part. The odor from Jeff's wound is pretty much gone and the drainage is looking better. He is a walking miracle and proves that to me day after day. His mesh that is exposed from the hernia repair has started to bunch up (that is the best way I can describe it). The hospice nurse told Dr. Ekram, but Jeff isn't having any symptoms from this change, so we will just monitor it for now.
I am calling the oncologist to check into a procedure called RFA. The colorectal advocacy group C3 sent me some e-mails about it and Jeff has decided that he is open to it. This is not a cure for him, but could potentially get rid of the abdominal tumors to help with pain. There is a person here in Lawrence that does it and then the surgeon that put in Jeff's port in Topeka (Tim Allen) also does this procedure. It is FDA approved and a lady here at work told me her husband had it done for his lung nodules & the insurance company covered it after some fighting. Not for sure if Jeff would be a candidate for it or not, but figure a consult doesn't hurt.
Everybody keep up the good energy and prayers.

Results

Jeff's urine sample showed that he has a urinary tract infection. He was started on an oral antibiotic last nite and will continue for 14 days. I don't know the results of Jeff's blood results, but we should find out this afternoon when we see hospice nurse. They are just checking to see how thin his blood is. They think that the blood in the urine might be coming from the UT infection.
Jeff was given the okay to take ibuprofen, but at a lower dose. He is not taking blood thinning medication at this time. His pain seems to be doing much better since he is able to take the ibuprofen today. I am calling the trial people again today, so hopefully I will hear something. Hope everyone is well and take care.

Jeff's Pain has Increased, but new treatment possibility

Jeff's blood transfusion went fine, but since he hasn't been able to take ibuprofen his pain has been much worse. He is taking his liquid Oxycontin frequently thru out the day again. Just today Jeff began to have blood in his urine and things that looked like blood clots. The hospice nurse came out to take some blood samples to make sure his blood is the right consistency. Also they took a urine sample.
I happened to trip up on a possible treatment that Jeff is wanting to try. It is a Phase I trial. It is called AuroLase Therapy. This trial is only open to head and neck cancer patients. I talked to the CEO of Nanospectra, the company fronting the trial, he said there was not a waiver that Jeff could sign to get in. I then got in contact with the FDA that then led me to a colorectal advocacy group called C3. I talked to the chair, Nancy, and she sent me some info about an FDA clause called compassionate use. Thru this clause a person can apply to be admitted into a trial that would not normally accept them. It is up to the company to allow Jeff into the trial and then we start the paper work. Nancy said that she has seen the FDA turn around these requests in 24 hours.
Nancy and I both have e-mailed the CEO, Donald Payne, and I am giving him today to respond and then I will try to contact him by phone tomorrow. If that doesn't work then we all might have to make phone calls and I will let everyone know his phone#. I am also not above going down to Houston, Texas to stand at his door.
Mr. Payne does not know Jeff's medical history other than he has stage IV colon cancer. It could be feasible that as more is learned about Jeff's health and this trial that it might not work out, but as of rite now it looks great.
I provided the link to the trial information, but this is the basic synopsis. He would be injected with AuroShell particles that would infiltrate the tumors. Then it would be exposed to a laser that would heat up the area (tumors) where the particles have accumulated and kill the cancer. Hope everyone is well & take care.

Jeff's Blood Counts are Low

Jeff is getting blood transfusion today that started at 8 am. He is receiving 2 units. He was having blood in his stools. The doctors are not for sure if it is related to his cancer or the ibuprofen that he was taking. Oncology was unaware that Jeff was take 4 ibuprofen tablets at a time. Apparently it interacts with his blood thinning medicine and can tear up the stomach. Also there is the possibility that it is part of disease progression. Rule of thumb is that if Jeff needs another transfusion after this then it is most likely related to the cancer. If he doesn't need another one then it is most likely related to the ibuprofen. We stopped coumadin and ibuprofen earlier this week and he was given a Vitamin K pill to take because his blood was too thin.
Jeff has had subsequent bowel movements without blood. His oxygen was low this morning when they started his blood transfusion, so they have put him on oxygen while he is in oncology today. We are in the process of figuring out the antibiotic information. Dr. Nelson will be back in next week. Dr. Nelson says that Jeff can have the antibiotics once a day, but Dr. Ekram says due to the half life of the drug it has to be given every eight hours to be effective.
Jeff is still in limbo about what to do, but seems to be leaning towards the idea that if he can get antibiotics once a day then he is more open to it then if it has to be given every eight hours. Everyone take care and I will update as I can and as things happen. I have typed this message fast, so forgive any typos.

Updates

The antibiotics are still up in the air. The hospice dr. (Dr. Nelson) said that the antibiotic could be given once a day when Jeff talked to him Friday evening, but when we called Dr. Ekram she said that would not be effective. If Jeff was going to do the IV antibiotics then he needs to have it every 8 hours because the half life of the antibiotic is short. Since we don't really know the specifics about the antibiotics Jeff wants to talk to Dr. Nelson about it when he is back from vacation, which I think is later this week. Jeff said that at this point he doesn't want to do the IV therapy if it is every 8 hours.
Maybe if Dr. Nelson and Dr. Ekram talk then things will be straightened out as to what can really be given with the antibiotics.
Jeff has been sleeping more lately and his appetite is continually decreasing. It seems like he has lost some weight just by looking at him, but he hasn't been on a scale. His skin color is fading and looks pale most of the time. His pain is creeping back up and he took some liquid pain medicine today. On a good note that hospice nurse said Jeff's lungs still sounded good today when she listened to them. That is all I can think of for now. Please keep up prayers and positive energy. Hope all is well with everyone.

P.S.
The infection Jeff has is an opportunistic infection that thrives in people with compromised immune systems. Also it is very difficult to treat with antibiotics. Here is a wikipedia link about it http://en.wikipedia.org/wiki/Pseudomonas. It was the best link I could find that gave simple language and a general idea of what the bacteria is.

Corrections

I verified the spelling of the bacteria. It is Pseudomonis and the antibiotic regiment would be gentamycin thru the IV and he would take cipro orally. I haven't researched all this just wanted to get the corrected spelling out there.

Culture Results and Most recent hospice visit

Well, we got the culture results back. It grew out pfeupomonis. This is what I was told the spelling was, but I have not been able to locate any information online about it. The synopsis is: it is resistant to almost all antibiotics. There is one his oncologist recommends that has to be given every eight hours thru an IV for at least 10 days that he could do at home with the exception of his first treatment. She told us that it would basically be a one shot deal. Most likely he could only be treated with this once and then there would be a high likelihood that it would build up a resistance to it. Jeff is weighing his options on what to do. Right now his main symptoms are just the change in drainage and odor.
During the last hospice visit the nurse took his oxygen saturation level. He was registering between 87-91 percent. His lungs sound clear though. Most people should have oxygen saturation in the upper 90s if not 100. That is all for now. I will update when decisions are made about the antibiotic. Everyone take care.