1

(7 replies, posted in Introductions!)

Hi Lainey, Pam, and Marion. 

Jeff recently had cyberknife at Georgetown Hospital to take care of a series of tumors near the head of the pancreas that were pushing on the nerves of the celiac plexus.  The pain that was radiating from his lower rib cage around to his back and up his shoulders has diminished we believe from this treatment.

Lately, he has started to experience rigors and sweats.  It comes on suddenly and without any significant fever.  The highest that it has gone up to is 99.4.  blood cultures have always come back negative.  We have come to learn recently that these rigors and sweats are probably due to the tumors.  The tumors secrete cytokines, which cause an inflammatory reaction, causing the rigors and sweats.  It can also be from blood clots as well.  Many advance cancer patients have blood clots from secretions from the tumors.

Jeff is getting ready to go into a trial at NIH where they have harvested leukocytes from him and are genetically engineering them to target the tumors and cancer cells to block receptors on the tumors and cancer cells so that they cannot make a blood supply, thus making them starve to death.  It is a very interesting approach in that it is systemic (perfect for stage IV) and uses the body's own defenses to fight the cancer.  There was another trial that we wanted to have him participate in where they would have harvested a piece of tumor and sensitized his Lymphocytes to attack the cancer cells.  Unfortunatley, his tumors are not readily accessible in order for them to harvest a piece of tumor. 

In both scenarios his immune system would be wiped out, the genetically altered cells are reintroduced and then he is given a drug to quickly grow up the army of fighting cells.  All of this is done in-patient and is cutting edge.  There is not much else out there that can help him at this point.

I pray that this approach will have positive results.  I hope that things are progressing in a positive manner for each of you.  To watch someone you love fade away in front of you is heart-wrenching.

Beth

2

(12 replies, posted in General Discussion)

Hi Kathryn,

My husband was diagnosed in 2011 with CC.  I can't believe that it has been a year since the Dx.  He has gone through many rounds of chemo since his tumors are inoperable.  Unfortunately, he is stage IV.  He recently had cyberknife at Georgetown Hospital to take care of a series of tumors near the head of the pancreas that were pushing on the nerves of the celiac plexus.  the pain that was radiating from his lower rib cage around to his back and up his shoulders has diminished we believe from this treatment.

Lately, he has started to experience rigors and sweats.  It comes on suddenly and without any significant fever.  The highest that it has gone up to is 99.4.  blood cultures have always come back negative.  We have come to learn recently that these rigors and sweats are probably due to the tumors.  The tumors secrete cytokines, which cause an inflammatory reaction, causing the rigors and sweats.  It can also be from blood clots as well.  Many advance cancer patients have blood clots from secretions from the tumors.

My husband is getting ready to go into a trial at NIH where they have harvested leukocytes from him and are genetically engineering them to target the tumors and cancer cells to block receptors on the tumors and cancer cells so that they cannot make a blood supply, thus making them starve to death.  It is a very interesting approach in that it is systemic (perfect for stage IV) and uses the body's own defenses to fight the cancer.  There was another trial that we wanted to have him participate in where they would have harvested a piece of tumor and sensitized his Lymphocytes to attack the cancer cells.  Unfortunatley, his tumors are not readily accessible in order for them to harvest a piece of tumor. 

In both scenarios his immune system would be wiped out, the genetically altered cells are reintroduced and then he is given a drug to quickly grow up the army of fighting cells.  All of this is done in-patient and is cutting edge.  There is not much else out there that can help him at this point.

I pray that this approach will have positive results.

3

(7 replies, posted in Introductions!)

Hi Pam,

I am so sorry to hear about your daughter, Lauren.  It is so tough to standby and watch this horrible disease and provide the comfort and support that the afflicted person needs.

My husband takes vicodin to help alleviate his pain and uses heat from a heating pad.  Fortunately, he does not have the shoulder pain, but did have that when they did the biopsy.  It was horrible.  He said that he now has a new "10" on the pain scale.

I will keep you and your daughter in my prayers.

Beth

4

(7 replies, posted in Introductions!)

My husband was diagnosed in November 2011 with stage IV CC.  It was quite by accident that the cancer was discovered.  He was experiencing some pain in the kidney area and had been on a weightloss regimen that involved high protein drinks (preparation for gastric sleeve weight reduction surgery).  A CT was done of the kidney and something was noted in a far margin of the scan.  After a contrast CT, further tests were ordered (PET / CT), which showed several highlighted suspicious lesions.  This was followed by a liver biopsy.  The biopsy confirmed CC and the associated masses in several locations (lungs, liver, near the pancreas head) classified this as stage IV.  We were so shocked.  To this day he is still asymptomatic.  He has gone through several rounds of chemo with a few different drug combinations.  Now he is looking at a Cyberknife procedure to keep one of the tumors from infitrating the bile duct and causing a problem.

He is continuing to experience pain near the lower portion of the rib cage on both sides radiating from the back to the front.  Has anyone had experience with this?  Nothing on the scans shows lesions in that area.   CT scans have not shown anything.  The Dr. wanted to do a PET scan, but this was rejected by the insurance since it was not part of the "standard protocol". 

Beth