Inspire2Live Update: ‘If we can take away the pain, we give them 6 to 12 months more!’

‘Nobody is doing research on pain in pancreatic cancer patients Peter. If we can take away the pain we give them 6 to 12 months more with a good quality of life!’

This quote is from dr. David Tuveson from Cold Spring Harbor Laboratories (CSHL), Long Island, USA. He said this in a discussion with Peter Kapitein from Inspire2Live about pancreatic cancer patients. Dr. Tuveson and Peter had just visited a pancreatic cancer patient in the hospital. This woman suffered from pain immensely. It was so sad to see.

This feeling of powerlessness resonated within Inspire2Live and between the patient advocates and made us decide to give it a second shot. We started the discussion about pain and pancreatic cancer a couple of weeks ago again to figure out what’s so special about this pain. We are now bringing together a group of researchers and clinicians from CSHL (dr. Tuveson laboratory), Glasgow (dr. Andrew Biankin), Verona (dr. Vincenzo Corbo), Amsterdam (dr. Hanneke Wilmink and dr. Maarten Bijlsma) and Rotterdam (dr. Casper van Eijck). And please; when some other brilliant researcher or clinician can help; she is most welcome.

It is an intense pain but also completely different from all other pains. And when the pain is too heavy, almost all of the patients get a dose of morfine that lowers their quality of life so much that they all choose to die. Dr. Tuveson and one of his students (who is now dr. Corbo) learned that the chemistry of the tumor is so specific that not only the tumor grows into the nerve system; also the nerve system grows towards the tumor. It seems like they attract each other.

There is still so much unknown about this pain that researchers should feel a challenge and an obligation to pick it up and give it their best shot and come up with a solution. We’ve already started the discussion and hope to bring together a group of brilliant people in the next months. For it is like dr. Tuveson said: ‘If we can take away the pain, we give them 6 to 12 months more!’ And that’s a lot more than we did so far with medicines.

Peter Kapitein,
CEO and Patient Advocate Inspire2Live