Pay No Mind to the Demons

There is a current popular song playing on the radio now, that contains the following words, 

"Settle down, it will all become clear.

Don't pay no mind to the demons they fill you with fear"

After almost three weeks of being totally upset and at times giving in to the fear, the past 72 hours have helped things, "all become clear". 

Three weeks ago a new 6 x 6 mm lesion appeared in Lori's brain on right motor cortex. 

Instant panic set in. First the experimental drugs "iniparib and irinotecan" were no longer working.

Second, some of her doctor's were of the opinion this new lesion was in such a dangerous part of her brain that she could wake up paralyzed or worse any morning. 

Third, there was fear that the nodules in her lungs were positively metastatic activity.

There seemed to be no good way to go forward and certainly none that offered any real hope. 

But my Grandmother Wills always told me that " God never gives us more than we can handle", and with the help of God and some very special doctors and friends, things are a lot brighter at this moment..

John Aquilino starting searching every clinical trial offered by any drug company in the world that might offer a path forward for Lori. 

Many of her doctors did the same. Over the past two years we have developed a team of contacts of oncologists and radiologists and neurologists, acupuncturists, nutritionists and more from Mayo Clinic( Arizona) , John Hopkins (Maryland), Suburban Hospital (Maryland) , MD Anderson (Texas), Georgetown (DC), Suburban Hospital (Maryland) and Hadassah Hospital (Israel) all acutely and completely familiar with the evolution of Lori's cancer, current condition, and every report from every MRI. CT, Pet scan, blood work, etc. 

We reached out to virtually everyone.

Here's the update on Lori as of this evening.

Yesterday we were informed that Lori was admitted into a very promising clinical trial at NIH under the supervision of Dr. Susan Bates.

Even though her current brain lesion on the right motor cortex has not appeared to grown have in the past three weeks, (thank the Lord) the NIH radiologist was able to "stretch" the MRI to get a measurement that allowed the lesion to meet the clinical trial requirements by the drug company.

It appears Lori has another very special doctor in the person of Dr. Bates.

The Bates' trial at NIH is using an investigational drug GRN1005 ( basically a peptide linked drug with three molecules of the chemotherapy agent paclitaxel) to see if it can penetrate the blood brain membrane and carry the paclitaxil to the lesion in the brain and hopefully, stop the lesions growth, possibly shrunk the existing lesion and also prevent new lesions.

Over the next few weeks, Lori will be carefully monitored by NIH and independently by Dr. Collins a neurologist we consulted with extensively on 11/8 with at Georgetown. MRI's will be taken after a few weeks and if there is any indication of any growth that threatens Lori's brain functions we will pull her from the trial and take the offending lesion out using cyber knife, a stereo tactic option.

And on a very positive note, the CT scan taken yesterday at NIH came back with the report's findings stating the nodules in Lori's lungs "do not" appear to be indicative of metastatic disease. As we had hoped though they are serious due to Lori's compromised immune system, they "do not" appear to be cancer which means the "tnbc" so far has only spread to the brain. 

Lori and I have continued to have lengthy ongoing discussions with Dr. Peter Cohen at Mayo in Arizona. 

Dr. Cohen and Dr. Gendler at the Mayo Clinic in Arizona, continue to be champions for Lori both seeking behind the scenes information about various results from ongoing clinical trials that may offer Lori a course of treatment and by searching for new avenues for Lori to seek a treatment that could offer some hope of a long term remission/or even cure.

Three days ago Dr. Cohen sent us a very promising (almost too good to believe) piece of information. 

There is an ongoing clinical trial in Dallas, Texas at the Mary Crowly Cancer Research Center, which is having very positive results from a Liposomal MUC1 cancer vaccine for patients previously treated with solid tumors in stage 3 0r 4 . 

This is a very similar vaccine to the one we were pursing in Israel. 

It basically takes tissue from the patients own immune system combines it with MUC1 antigen and injects it into the patient. The theory being that by using the patients own immune system the vaccine can effectively get to the cancer cells everywhere in the body, (including the brain) and the vaccine then stops the cancer from metastasizing. In short, almost an actual cure. 

This seems to be the most exciting development of all for all metastatic cancer patients. Dr Peter Cohen is very positive that this holds real hope for Lori.

The drug company is Oncothyreon Inc., and they have put tens of millions into this vaccine. They are very optimistic this is a "game-changer".

So, we have to get Lori's brain lesions (tumors) stabilized for about three months. The MUC1 vaccine does not seem to be able to stop the growth of pre-existing tumors. 

It appears the Bates trial will be administered every three weeks so this will allow Lori to come to SPI at least two weeks at a time and fly back to DC for the 18 weeks of 6 treatment cycles (every cycle = 3 weeks). 

Here on SPI the sunshine and warmth can help her immune system recover and strengthen. 

Maryland's cold and wet winters are simply too debilitating for her to endure without a break. 

Lori is currently slated to start the first treatment on 11/21 or next Wednesday.

If we can get Lori's lesions in her brain stabilized we will then seek admittance into the MUC1 trail in Dallas. 

If that trial is closed at that time we will simply have to cross that bridge at that time. It should be easier to get a PLUS 1 designation or some other avenue of access to the MUC1 vaccine here in the USA than in Israel. 

For the moment however, she is in a trial that holds promise, her treatment starts next week, her current lesion has not appeared to have grown the past three  weeks and the nodules in her lungs do "NOT" appear to be cancer and a vaccine that may actually be able to buy her years of quality of life is actually in trials in Dallas. 

Lori is in great spirits for the first time since she got news of the brain lesions on November 2, 2011 and she was told she had no more than 3-6 months left to live. She is driving, grooming dogs, seeing movies, and thinking about Thanksgiving, all normal and quality of life activities for her. 

Thanksgiving will be at Hunter's Inn in Potomac, Maryland,  with her sister, Annie, and nephew, Kenny, and their family and where Stephen will be cooking. And we are deciding on whether to do Christmas in North Potomac or here on SPI. 

That is all I can write for now. Going to go run a few miles on SPI. I will be flying back to Maryland next Tuesday the 20th. 

I have written this before in this blog but today it bears repeating. There is a line from the movie Kung Fu Panda that goes something like this (I am paraphrasing).

"The past is gone we no longer possess it, and the future is unknown so we do not hold it, but the present, the present is a "gift" and that is why we call it the "present". 

It is indeed an early Christmas present to have Lori in this new trial and doing so well at this moment.

I may be beat a bit physically but I am upbeat emotionally and that makes the "present" even a more special gift. 

Bad Day at Black Rock

When I was a kid I watched a a movie that made an impression on me for life.

It was made in 1955, but I probably did not watch it until around 1963.

It starred Spencer Tracy, Ernest Borgnine Robert Ryan, Anne Francais, Walter Brennan, Dean Jagger, and a host of stars.

It was directed by John Sturges.

It was called "Bad Day at Black Rock".

The plot was fascinating. 

The time is 1945, just after the end of World War II. The great railroad train Streamliner stops at the town of Black Rock Arizona. The train discharges a single passenger with only one arm named John J. Macreedy.The conductor comments that this is the first time in four years that the train has stopped there. Macreedy replies that he is only staying for one day, and the conductor comments that "in a place like this a day can be a lifetime." The train departs. Macreedy is confronted by the stationmaster who complains that he had not been informed that the Streamliner was stopping, to which Macreedy replies "Maybe they didn't think it was important." Macreedy asks the stationmaster if he can get a cab to Adobe Flat. The stationmaster replies "no cab." Macreedy then asks if the hotel is open, and the stationmaster nods. Macreedy walks into town. When the townsfolk learn that Macreedy wants to visit nearby Adobe Flat, they react with extreme suspicion and hostility. Pete Wirth, the hotel keeper, tries using a bogus excuse about war restrictions to deny renting a room even though it is obvious the hotel has vacancies. After persistence, Macreedy rents a room, only to be harassed by a cowboy named Hector for no apparent reason. Macreedy's attempts to rent a car create further hostility, prompting another local, Reno Smith, to have a private detective he knows in Los Angeles check out Macreedy's background. Macreedy then visits the sheriff's office only to find that the sheriff, Tim Horn, is an ineffectual drunken sot. Macreedy mentions that he is trying to locate a farmer named Kumoko at Adobe Flat and Horn becomes as hostile as the rest of town. Smith then accosts Macreedy feigning friendliness. Macreedy asks about Kumoko, and Smith tells him that Kumoko was sent to an internment camp after the start of the war. Pete's sister Liz drives up in her jeep and rents it to Macreedy, who drives off to Adobe Flat. Despite Liz's assurance that Macreedy will find nothing and Horn's feeble attempts to assert his authority, Smith, after hearing from the private eye that there are no records on Macreedy, orders another local, Coley Trimble, to get rid of Macreedy, despite protests from Pete and the town doctor, Doc Velie. At Adobe Flat, Macreedy finds only a burned out house, a deep well and wildflowers growing in the dirt. Returning to town, Trimble rams Macreedy off the road, then harasses him for being a "road hog." Macreedy decides to leave but is unable to get transportation to the next town and finds that the train will not come until the next morning. After enduring comments of racial bigotry relating to Kumoko, Macreedy is convinced that Smith is trying to kill him and attempts to telephone the police, but Pete will not help him. The doc offers Macreedy his hearse for escape, but it has been tampered with and will not start. After trying to telegraph the police, Macreedy visits the café, where Coley goads him with more bigoted slurs. Macreedy downs Coley with judo, then accuses Smith of murdering Kumoko; he is convinced that the wildflowers hide something buried at Adobe Flat. Macreedy reveals that Kumoko's son Joe died as a result of saving his life in Italy during the war, earning a medal that Macreedy is bringing to his father. Doc and Pete then confess that Kumoko leased Adobe Flat from Smith under false pretenses of available water. Kumoko, despite being cheated, dug the deep well, enraging Smith. Smith is further angered after being turned down by the Marines and after getting drunk, decides to "scare the Jap" along with Coley, Pete, Hector and Sam, the café owner. The incident gets out of hand and Kumoko is killed. Pete then calls Liz and asks her help in getting Macreedy out of town. Liz drives him out of town into the hands of Smith. Smith shoots Liz to silence her, then turns the rifle on Macreedy. Macreedy creates a Molotov cocktail with jeep gas, his necktie and a glass bottle. He hurls the bottle at Smith, catching him on fire. Returning to town with Smith, Macreedy finds the other four witnesses locked up in a cell. The next morning, the police escort the prisoners away as the Streamliner pulls in. Macreedy, after hearing pleas from Doc, gives him the medal awarded to Kumoko's son Joe. The conductor comments that the excitement must be the reason that the train stopped here for the first time in four years. Macreedy comments "second," then boards the train.

Today we learned that Lori's cancer has developed another

metastatic lesion in the brain,

It was surreal, scary, and intimidating.

It is a 6 x 6 mm lesion that has grown in 90 days.

Translation, she has a very aggressive cancer that is trying to kill her and the iniparib and irinotecan that worked the first time is no longer working.

We are already looking at other clinical trials.

This is a bad blow.

There is no good spin to put on it.

I am delaying my return to Texas for a few days.

Tomorrow we will be at John Hopkins.

We need a better treatment.

This week really was not great one.

I had an identity theft issue that caused me to change my cell phone number of 10 years.

My yellow lab, Elle, the last of my four labs is going down hill 

from cancer.

I am feeling a bit overwhelmed.

I will figure this out. 

I will not let Lori lose to this disease.

I will not have a "bad day at black rock".

Not without a fight.