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.