Santa Claus - CyberKnife UPDATED

Greetings,

Merry Christmas / Happy Holidays to you.

Our Medical Insurance Company approved our procedure for Johnny to have the CyberKnife treatment to his two liver tumors.  The liver tumors are of great concern now due to their growing in size.  Whilst having  treatment they will also look at the tumor around his stent, pancreas and lungs.  

This is certainly wonderful news for us.  To be approved, due to Johnny's complex situation.

We have our first appointment for his Fiducial Placement of Gold Nuggets on Tuesday 30th December, 2014. 

 

Below to help you understand CyberKnife and to allow you to understand what Johnny's new steps are,  I have written a summary - well a long summary sorry, as it is so incredibly complicated.  I hope the images help you understand as you follow the summary.

We will still need to have our new Chemo regime but this will happen after the Cyberkbife.  

Whilst reading and understanding CyberKnife, I am blown away to find that the medical field and technology has moved on masterful leaps and bounds.  

Treating liver cancer with radiation therapy is a challenge because liver tumors move with respiration.  In addition the tissue surrounding the liver tumors is very sensitive and can be damaged easily.  The CyberKnife Radiosurgery System is able to deliver very high doses of radiation to both primary and metastatic liver tumors with extreme accuracy. Working in conjunction with the CyberKnife System is the Synchrony Respiratory Tracking System, which enables the radiation beam to track tumor movement in real time and allows Johnnys to breathe normally during the treatment sessions. With the CyberKnife System, doctors can zero in on a moving target – the liver tumor – and irradiate it without harming the healthy surrounding tissue. As a result, the CyberKnife treatment will be more comfortable for Johnny, radiation is delivered accurately and treatments can be completed in one to five sessions.

The CyberKnife process involves four steps:

1. Fiducial placement (might need a bodyguard - don't want his gold to get nicked!
2. Set-up and CT imaging
3. Treatment planning
4. CyberKnife treatment

Fiducial Placement of Gold Nuggets: Johnny is scheduled Tuesday 30th December, for a short  procedure in which three to six fiducials tiny gold seeds each about the size of a grain of rice  are inserted into and around the liver tumor using CT guidance, ultrasound or via a camera that is passed through the mouth into the stomach and small intestine. The CyberKnife System uses those fiducial markers as "reference points" to identify the exact location of the tumor during treatment. Once fiducials are implanted, we have to wait one week before CyberKnife treatment planning can begin to ensure that fiducial movement has stabilized.

During set-up and imaging: Johnny will be fitted for a custom body cradle, which is designed to help keep him more comfortable to ensure consistent positioning for both imaging and treatment.  Johnny  will be fitted with a special Synchrony vest, which is worn during CyberKnife treatment and enables the robot to correlate chest motion and breathing patterns with the tumor position. The data generated with the vest allows the CyberKnife robot to precisely follow the tumor’s motion as it delivers "each beam of radiation", ensuring safe and accurate radiation delivery.

Whilst wearing the vest and positioned in his  cradle,  Johnny  will undergo a series of CT imaging studies, which will enable the CyberKnife team to determine the exact size, shape and location of the tumor. A CT scan will be necessary to fully visualize the tumor, liver and nearby anatomy. 

Next a treatment plan:  specifically designed by a medical physicist in conjunction with our doctors.  During treatment planning, the imaging data is downloaded into the CyberKnife System’s software. The medical team determines the size of the area being targeted by radiation and the radiation dosage, as well as identifying critical structures where radiation should be minimized.

 

Dr. Alex Gottschalk, may choose to deliver the liver cancer treatment in one session, or stage it over several days.  Note liver cancer treatments are typically completed within one week.

Time for treatment: Johnny will be asked to put on this Synchrony vest and lie on his custom body cradle. The radiation therapist will ensure the vest is properly adjusted and Johnny is positioned correctly on the treatment couch.

As treatment begins, the location of the liver tumor will be tracked and detected continually as Johnny breathes normally. The medical team will be watching every step of the way as the CyberKnife System tracks  Johnny’s liver tumor as it moves, and safely and precisely delivers radiation to it.

The CyberKnife System’s computer-controlled robot will move around  Johnny’s body to various locations from which it will deliver radiation. At each position, the robot will stop. Then, special software will determine precisely where the radiation should be delivered by correlating the location of the tumor using digital images of the fiducials and information from the Synchrony vest. The CyberKnife’s robotic arm will adjust the radiation source automatically, to follow the liver tumor as it moves.

 

Once treatment is complete, Johnny should be able to quickly return normal life.   Although we will will not know if he will need the full five series of treatments as determined by Dr Alex Gottschalk. 

We are  fully aware that his tumors will not all  disappear. Doctors will monitor the outcome in the months following Johnny’s treatment through physical exams, blood tests and imaging techniques, such as CT scans. 
 

What makes pancreatic cancer so deadly?

I thought you might find this article of interest.  Note it's from August 2008.

NFL great Gene Upshaw passed away suddenly from pancreatic cancer. Oncologist Allyson Ocean explains how the illness felled Upshaw only four days after doctors found it

Gene Upshaw, the executive director of the National Football League Player's Association the union for NFL players died late Wednesday evening of pancreatic cancer while vacationing in California's Lake Tahoe. Doctors diagnosed the 63-year-old Hall of Fame offensive lineman with the disease just four days earlier.

Upshaw was a guard for the Oakland Raiders from 1967 to 1981. He played in seven Pro Bowls and three Super Bowls. He served as head of the NFL player's union for 25 years.

Upshaw's wife, Terri, took him to a hospital on Sunday, August 17th, because he was having trouble breathing. A biopsy revealed, much to everyone's surprise, that he had advanced pancreatic cancer.

In March, actor Patrick Swayze star of the hit 1980s film Dirty Dancing revealed he had been diagnosed with the illness in January. Doctors' reports indicated they had caught his cancer relatively early.

The pancreas secretes hormones and enzymes to digest our fats. One of those hormones is insulin, which prompts the body to use sugar in the blood rather than fat as energy. Its levels are low in diabetic patients, who suffer from abnormally high blood sugar.

Only one fifth of Americans diagnosed with pancreatic cancer survive for a full year, according to the American Cancer Society, and it is the fourth leading cause of cancer death in the country.

How does the disease develop without noticeable symptoms and then kill so quickly?

 ScientificAmerican.com called Allyson Ocean, an oncologist at New York Presbyterian Hospital/Weill Cornell Medical Center, who specializes in gastrointestinal cancers including pancreatic cancer. 

Why does pancreatic cancer kill so quickly?
Pancreatic cancer is typically diagnosed at a late stage because it doesn't cause symptoms until it's too late. Weight loss, abdominal pain, jaundice [a yellowing of the skin due to toxic buildup in the liver] those are the most common symptoms. They usually start after the tumor is a significant size. By then, chances are, it has metastasized.

Only about 10 to 15 percent of pancreatic cancers are diagnosed when they could be considered for surgery. And the prognosis is poor even in patients who do have surgery, because it comes back about 85 percent of the time. At best, 25 to 30 percent of patients are alive five years after surgery.

When doctors do pancreatic cancer surgery, they take out 95 percent of the pancreas, including the tumor, and then they leave a small remnant of the pancreas in there that serves [the insulin-producing] functions.

If a person can live without a fully functional pancreas, then what, ultimately, kills most pancreatic cancer patients?
When most patients die of pancreatic cancer, they die of liver failure from their liver being taken over by tumor. (Johnny has two tumors)

What precludes doctors from performing surgery on late-stage patients like Upshaw?
We don't do surgery if the tumor has already spread outside the pancreas, because there's no survival benefit in removing the tumor. We also sometimes can't do surgery [when the tumor] involves the great blood vessels, the superior mesenteric vein and superior mesenteric artery. Those are the main vessels that come off of the aorta, the main artery in our body. If the tumor is wrapped around those blood vessels, then we can't take it out. (same for Johnny)

Why is this particular cancer so aggressive?
Because of the nature of the tumor cells. They escape the treatments, they hide out, and then they come back. And they grow again and they affect the liver and then they kill people.

What are the biggest risk factors for pancreatic cancer?
The biggest known risk factors are smoking and family history it can be a hereditary disease. Then there are some other more obscure risk factors, such as defects in the anatomy of the pancreas, but that's very rare.

What factors affect how early a person gets diagnosed?
Depending on where the cancer is diagnosed in the pancreas, it can affect how soon it's diagnosed. For instance, if the cancer is in the head of the pancreas, which is close to the common bile duct, and it grows and it causes obstruction of the common bile duct, a patient can get jaundiced. And then they could [show symptoms] sooner than someone whose pancreatic cancer is in another part of the pancreas, like the tail. They would not present with jaundice, so we would not have a clue that there was necessarily anything wrong with them.

What are some of main symptoms as the cancer progresses?
Unexplained weight loss, abdominal pain, nausea, vomiting. Back pain is another one, because the pancreas is very posterior in the body. Back pain is also the most common complaint that patients go to an emergency room for, and most of the time it's just muscle pain it's not pancreatic cancer.

Upshaw's wife brought him to the hospital because he was having trouble breathing. What might have caused that?
It could be for a number of reasons, such as if the disease has spread to the lungs. If he was so run-down from having lost a significant amount of weight, and he was weak and fatigued, he could have had difficulty breathing, too.

Another important thing with pancreatic cancer is that it's one of the cancers that is frequently associated with blood clots. He could have had a blood clot in the lung, called a pulmonary embolism.  Johnny has a blood clot.

What treatments are available if surgery isn't an option?
Chemotherapy and radiation therapy. Sometimes we do both together. We are also using biologic agents now, meaning antibody therapy. There's a drug called Tarceva, which is an antibody [or immune protein] against the growth factor that the tumor cell makes, and so it blocks that growth signal. It's given in combination with [a chemotherapy called] Gemcitabine. In a large randomized clinical trial, [the combination of the two drugs] was shown to improve upon Gemcitabine alone.

Thursday 11th December Stent Issues and Cyberknife

Greetings Friends and Families,
It has been a while since we last posted an update.

A good girlfriend in Chicago sent me a message telling me " You are a warrior be strong".

I have to say Johnny is the Gladiator the Brave Heart with tenacious inner strength,  he keeps fighting.  Johnny is my Gladiator and your Gladiator.

Monday 1st December,  we met with our Oncologist Bobby, only to be told within the first 2 minutes of sitting down Johnny's liver count had  elevated severely over the last three weeks from 1.1 to 1.2 to 1.7 but most shockingly to 7.8.     The sole reason for his yellowing eyes, yellowing skin, veracious itchy skin,  the feeling and taste of toxins within his body and severe discomfort in his stomach.

Come 5pm Monday,  evening,  Johnny was scheduled urgently for  Endoscopic Stenting surgery.

Stenting is the most common palliative treatment for biliary obstruction in un-resectable pancreatic cancer.    His  "metal" stent inserted in July of this year, the tumor was found to be growing half way up through the stent.  Hence the blockage and heavy jaundice.  The "metal" stent cannot be extracted as  it had become embedded as well as blood vessels  wrapped around the stent making themselves mighty comfortable.   Therefore, another stent was inserted, this time plastic.  It's a Stent within a Stent.   A pipe within a pipe.  See image below.  Every two and half months he  has to have Endoscopic Stenting  to have the plastic stent replaced and re-checked for tumor growth inside the stent.

The CA19 cancer markers are up, from 127 - 178 - 348 - 358 and now 2411 a major spike.   The cancer is growing and Chemo is something we have to re-consider.  His two liver tumors are growing considerably and are of concern.   We would like to enjoy the Christmas Season with friends and re-start Chemo January 2015.  But this is only if Bobby is agreeable. 

Wednesday 10th December, we met with Dr. Alexander Gottschalk from UCSF,  a specialist in the CyberKnife field, Radiation Oncology.   "CyberKnife Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and  non-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment which delivers beams of high dose radiation to tumors with extreme accuracy.  Though its name may conjure images of scalpels and surgery, the CyberKnife treatment involves no cutting.  In fact, the CyberKnife System is the world’s first and only robotic radiosurgery system designed to treat tumors throughout the body non-invasively, unfortunately it is "rarely" approved by medical insurance companies due to the exorbitant costs and relatively short life extension.  There is no promise.

 

Tuesday 16th December,  we shall meet with Bobby to discuss and review the above along with the huge possibility of not being able to qualify due Johnny's body state and ability to recover from both sessions at a time.  Chemo and Radiation  would be a double whammy on Johnny's body.

Johnny is up and about, as much as he can, he does have a lovely healthy appetite, miserably the weight is not piling on,  weight is dismally  down to 127.    No matter how much he eats the cancer takes  it.    The heavy night sweats are still with us, he rotates around the bed clockwise looking for a dryer place,  before another bed sheet change, these can be up to 4 a night, his sleep is interrupted on an hourly basis.   Back up to 18 colorful pills a day along with his two injections for the blood clot.  

Stent with in a Stent

CyberKnife  -  it's a Robot

Fiducial Placement,  depending on the type and location of the tumor,  the team   recommend placement of fiducials which are small gold markers inserted near the tumor  to help identify the exact location of the tumor during treatment.