Friday, October 24, 2014

Catch the Fever! Light the Night!

Jeff and I have now met two people who have benefited from Penn’s gene therapy which was funded in part by the Leukemia and Lymphoma Society.  We met Doug Olsen, one of Dr. Porter’s first T-cell gene therapy patients, in April http://jeffs-journey.blogspot.com/2014/04/white-kneed-jeans-and-other-joys.html and Steve from our Gilda’s Club support group. 

At Gilda’s Club this week Steve smiled and shook his head in awe at his own survival.  He’d had an extremely aggressive lymphoma that responded poorly to traditional treatments (the chemo/radiation Jeff refers to as “bloodletting” except they often work albeit with lingering side effects).  Steve managed to get into a gene therapy study that he didn’t technically qualify for (he was worse off than the patients they were accepting).  While Doug Olsen’s fever began about a month after receiving his genetically-modified T-cells, Steve’s began the evening after his.  The fever accompanied the virus-like spreading of the cancer-killing genetically modified T-cells.  I know this sounds somehow surreal, even unreal, but Steve reports that he was cancer-free within a week!  He states simply:  “Everyone should be getting this treatment.”


These are exciting times in the field of blood cancer!  Please support our Light the Night team by using the link at right to help L&LS continue their critical work.

Tuesday, October 21, 2014

One of the Winners


“It’s nice to see you again,” said Daniel.

Young Dr. Daniel wasn’t just exchanging pleasantries.  He was genuinely glad to see Jeff who Daniel describes as, “one of the winners.”  We can only imagine a typical day in the life of an oncologist.  He probably sees more patients at critical stages of diagnosis and disease so that seeing happy, healthy Jeff provides a nice reprieve.

Dr. Daniel is in his first year of a two-year fellowship with Dr. Porter and is clearly star-struck by his idol.  “We wait in line for the opportunity to work with Dr. Porter,” he told us.  I mentioned seeing Dr. Porter’s picture in the US Airways magazine on our way to California.  Dr. Daniel had seen it, too, and remarked that “lots of things are happening right now” and that Dr. Porter had recently published “another big paper.”  Even though Jeff didn’t qualify for Dr. Porter’s trials, it is a good feeling to know the man is so accomplished.

Jeff’s relatively minor complaints – profuse sweating, nausea, leg cramps – are likely attributable to the immunosuppressant, Cellcept.  Dr. Porter said 3-20% of patients report issues with sweating although he’s actually never heard any of his patients complain of it.  Nausea is far more common among his patients on Cellcept.  Dr. Porter decided to cut the dosage in half and check Jeff’s liver function again in a month.  He feels the side effects will diminish considerably on this dosage. 

Lots of blood was drawn this morning - more than usual - and when Jeff questioned it, no explanation was offered.  I think maybe he was due for more extensive testing – maybe the test to make sure his blood is all Nicole’s (an Engraftment Analysis).  Jeff needed food quickly after “giving” all that blood.  Due to a problem with SEPTA, we’d arrived late and hadn’t gotten our usual breakfast at Gia Pronto on the ground floor of the Perelman Center.  The 7:07 a.m. train from Yardley hadn’t reached the next stop before police activity forced us to return to Yardley.  Evidently, a pedestrian had been hit by a car on the tracks.  Instead, we drove into the city in rush hour traffic.  Still, our stressful drive couldn’t compare with the bad day that pedestrian was having. 
 
Jeff acquired a verboten tan while visiting our youngest son, Keith, who is stationed at Camp Pendleton in southern California.  It was a great trip!  Kim came along with us and it was good to see brother and sister together.  Keith looked quite mature.  We also visited niece Lissa and her beautiful family and worshiped with them, leaving a note behind for their congregation: “thanks for praying for Jeff through his bone marrow transplant and recovery.”  We saw a lot of Spanish architecture, got our toes in the Pacific (well, Kim and I did, anyway) and Keith was glad for our visit. We left sunny California and returned to a rainy Philadelphia. 

 Our blog has now been read on five continents.  We are awed by the network of blood cancer patients and caregivers and pray for all those people who find us on the web and maybe get some comfort from Jeff’s story.  He is, after all, “one of the winners.”