Israel's pancreatic cancer foundation and how it's supporting people
The thing about pancreatic cancer which makes it so scary is that patients respond, often well, to certain chemo-therapies - until they stop responding
By PAM PELEDCancer illustrative(photo credit: PIXABAY)
Nostalgia is defined as “a sentimental longing, or wistful affection for the past.” It’s typically associated with a place where one spent long hours. I spent long, long hours at Tel Hashomer when my mother was dying from pancreatic cancer, and when my husband was treated for the same awful disease. Trust me: I feel zero nostalgia for the place; I’d be happy never to set foot in its precincts ever again.So I was far from happy to get a call from Maria Raitses Gurevich, a researcher who works alongside Dr. Talia Golan, inviting me to a meeting in the hospital to set up an advisory/support board to help patients who are being treated for pancreatic cancer (PC), and their families. Golan, the world’s most compassionate oncologist, was born in South Africa and made aliyah with her parents as a schoolgirl. Blond and blue-eyed, not only is she drop-dead beautiful, Golan is also brilliant; despite her dismissal of all accolades, she is quite possibly on track to find a cure for the dreaded PC, a disease that today kills some 800 patients in Israel every year, and is the third leading cause of cancer-related deaths worldwide.Although she is quick to temper expectations, Golan’s 10-year research on the efficacy of PARP inhibitors for patients who happen to carry a mutation of the BRCA1 and BRCA2 genes, and who respond well to Folfirinox, (a standard-of-care platinum-based chemotherapy most commonly used for PC treatment), provoked a media frenzy. This is crazy emotional for us; my husband Martin was a BRCA 2 carrier, responded fantastically to Folfirinox, and we finally managed to hunt down some off-trial blessed PARPs for him in a story that rivals finding the fragments of the Dead Sea Scrolls. But we were just months too late.Breakthroughs in treatment of PC can mean the difference between life and death: the phase III clinical trials, of which Golan served as a principal investigator and designer, demonstrate rare positive results. (Astonishingly, another PC trial at Tel Aviv University, which also uses biological treatment strategy and is still in its development phase, also demonstrated initial positive results, providing a ray of hope for the future. The study still requires clinical phase testing; positive initial results are a prerequisite for the development of every new treatment.)PC is notoriously hard to treat. It typically presents when the disease has spread to other organs; usually it’s caught too late to make operating even an option. One minute you are cruising through life, lounging in a Jacuzzi making fabulous retirement plans; the next you are told that you’re stage 4 with not long to live.It’s brutal.MOST PEOPLE, even healthy ones, do not have a warm and cozy relationship with their pancreas; I confess I didn’t even know what that particular organ was good for, until we had to know. So here are a few facts for the uninitiated:The pancreas is located in the abdomen; it’s essential for converting the food we eat into fuel for the body’s cells. It’s close to the liver, and I assume (but I might be wrong) that for this reason the cancer can spread quite quickly to that second organ, and that’s bad news. The pancreas is a spongy sort of body, averaging about eight inches; it looks a bit like a fish spread out across the abdomen. Its head lies just where the stomach empties partially digested food into the small intestine; the pancreas releases digestive enzymes with impressive sounding names like trypsin, chymotrypsin, amylase and lipase to break down the food into elements that then make us fit, and grow our hair, and do whatever food does in our body apart from making us fat. That’s known as the exocrine function.Then there’s the endocrine component that creates and releases important hormones directly into the bloodstream, like insulin, which lowers blood sugar, and glucagon, which raises blood sugar. Although this sounds like tall/small Alice in Wonderland experimenting with cake and drinks in glass bottles, bad management of proper blood sugar levels is not the stuff of fairy tales. Brain function can crash when sugar goes haywire, as can the liver and kidneys.So the pancreas, it turns out, is a crucial kind of organ, and it even sounds sort of sexy. Apart from a head it has a neck, or body, and a thin tail at the end. In order to do the whipple procedure – an operation to remove the tumor which, if successful, can blessedly provide more years of life – the carcinoma has to be situated in the head. There is something called a distal pancreatectomy for the tumor in the tail; nothing is guaranteed to help.
Even for those of us unfortunate enough to have had more than one dose of the dreadful disease in the family, it’s still hard to figure out the technicalities and the treatments. This is where “LoveLove Israel – The Israel Pancreatic Cancer Foundation” slots in – the newly formed Patients’ Advocacy Organization, a first in Israel. LoveLove does not symbolize the warm embrace of the Association for the patients, although that is certainly referenced in the title. The pancreas, in Hebrew, has the (to English ears) slightly whimsical title of lavlav – hence the nomenclature.The association aims to provide information, patient care and family support for patients with pancreatic cancer. It’s a fine line, raising awareness – if you catch the disease early enough you have a far greater chance of surgically removing the growth, and possibly radically raising survival rates. However, at this time there are no mammogram equivalents for preventative testing, and no definitive symptoms. Not every weight loss means that you need to run for an MRI, not every back pain is linked to the pancreas. Still, knowledge is power; making knowledge more accessible can only help. For those at high risk, such as carriers of BRCA 1/2 mutations, tests such as MRI surveillance can provide early detection. Huge efforts are underway worldwide to develop early detection methods based on imaging or biomarkers – obviously, the earlier the disease is caught, the greater is chance of surviving it.The newly formed board, staffed mainly by people like me with personal brushes with PC, aims to become a support group, with a website that will provide information on treatment options and available help. Other hospitals including Ichilov and Asaf Harofeh Medical Center have been invited to join.THE THING about pancreatic cancer that makes it so scary is that patients respond, and often respond well, to certain chemotherapies, until they stop responding. Then the treatment is changed, and often a good response kicks in again. Until there is no response. And so it goes, until the treatment options are exhausted.But slowly, slowly, more treatments are becoming available, and Israel might just be the country to crack this scourge miraculously and smash it off our worry list. Just over 20 years ago, during our first fight with the pancreas, there was very little to do. Gemcitabine bought my mom a few months. When that stopped working there was nothing more that love or money could provide. When Martin was treated, just over a decade later, there were already four or five drugs; each bought a few more precious months of life.Now, there may be much more hope on the horizon. Wouldn’t it be wonderful if the cure came shining out of Zion.For more information:www.lavlav-cancer.co.ilThe writer lectures at the IDC.peledpam@gmail.com
