- C
- J
Have you ever said, thought and acted upon your mid-life crisis? Those of us over 40 have done some pretty crazy stuff; purchased a new car, went on an awesome vacation, dyed our hair. In this lifetime, I never imagined that I would be witnessing a true mid-life crisis with my own sister.
My sister Gina was diagnosed in January 2015 with a “pancreatic neuroendocrine tumor”. Pancreatic neuroendocrine tumors (pancreatic NETs or PNETs) account for less than 5% of all pancreatic tumors. Recent studies have determined that 4 to 5 out of every 100,000 people are diagnosed yearly with a pancreatic neuroendocrine tumor. Pancreatic neuroendocrine tumors are classified as rare cancers. This is the same cancer Steve Jobs, former CEO of Apple fought.
This disease can greatly reduce your life span, but will never reduce the love, the spirit and the sense of hope and faith we have for Gina. With this fight comes numerous obstacles.
Last year after her diagnosis, Gina immediately had the “Whipple” procedure, one of the most serious operations. The surgeons removed 50% of her pancreas, her gallbladder, part of her intestines which also included numerous disconnects and reconnects of gastrological parts. Her tumor was also pressed against a main vein which made a lengthy surgery even longer than the norm. Additionally, a little spot was found and removed from her liver. The procedure was considered a success.
Gina’s first scan after surgery showed the cancer had spread to her liver. She immediately started a treatment plan. Despite three different oral chemotherapies and monthly shots, scans showed the cancer continued to spread throughout the liver. Chemotherapy was not working for Gina.
Traditional therapy wasn’t working - It was time to get more aggressive. Gina’s doctors had talked about direct to liver therapies, however she was at high risk for infection due to her “Whipple” surgery. She met with a liver transplant specialist and another oncologist and was selected as a good candidate for a liver transplant. In the meantime, doctors recommended that we be very aggressive with treatment and immediately begin direct to liver therapies, which she started in April 2016. With this process, doctors mapped out her body and identified specific radiation beads that are made precisely for her body. The doctors started with the left lobe of her liver and finished the right lobe in early June. We were all hopeful that the treatment would help!
Her July 2016 scan indicated that the radiation was killing off the cancers cells in her liver (good) but that the cancer had spread to the lymph nodes in her abdomen. Because the cancer has spread outside of the liver, the liver transplant treatment is no longer a viable treatment option.
Gina’s best option now is peptide receptor radionuclide therapy (PRRT) treatments (also called radioisotope therapy), which are only administered in Iowa, NY and Texas. PRRT treatment is not FDA approved in the US but has been used in Europe for 20+ years. We are hoping and praying that Gina can get into a clinical trial at one of these facilities. The only other option for Gina would be to have the treatment done in Europe. With this would come astronomical out of pocket expenses and most certainly will not be affordable.
While Gina waits to be selected for a clinical trial, doctors have recommended another oral chemotherapy (Votrient). Because this medication is not FDA-approved, insurance companies will not cover it and it's a very expensive drug; a one-month supply usually costs around $10,000.
Gina's current medical bills are mounting to over $15K out of pocket. And today she's faced with continued scans, experimental prescriptions, going back and forth to different states and now possible overseas travel. It’s a very particular and rare cancer that requires medical experts beyond the normal care of cancer. Therapies and diagnosis will be taking us to various cities in this nation.
My sister Gina lives a life like no other I know. She has packed more in her 44 years than any person 1/2 her age. She has continued making it to work through these difficult times and appreciates the opportunity as her workplace continues to believe in her. She doesn’t give up! She is the “fun auntie” to my kids, always willing to take them somewhere special or set a fantastic memory event to cherish for a life time. Some events not even knowing that they were that special until something like this happens. Gina is a servant leader, always worried about and doing something for someone else.
In fact, our Mom was just diagnosed and operated on for breast cancer. Gina was there with our mom through her less fortunate information and has continued to be by her side despite her own struggles. What goes without saying is that “WE WILL NEVER GIVE UP THE FIGHT “!!!
I have learned from my sister, I will not complain when I think I am having a bad day, for someone else; family, friends or complete strangers might have it worse. There is too much to list in this little time or space. We want nothing more than to hug, kiss and be with her in her time of need. We, whether we are family, friends or strangers could be much worse off. WE want nothing more to show our love, support and prayers of accomplishment. We want her to never forget the impact she has made on the countless lives of her family, friends, work associates and community.
This has all has happened in a matter of months so you can imagine how scared we all are. Gina will not lose hope for treatment, but it won’t come without cost.
During this time of need, contributions would be very much appreciated for it causes stress like you can’t imagine nor should anyone have to experience. That unnecessary stress continues to weaken the system and create unknown thoughts and doubts. IN lieu of flowers and plants and gestures of entertaining (all which Gina appreciates greatly!!), money is required to treat, pre-treat and explore new therapies that will slow down this hardship. Your contribution will give Gina a chance. Please help in any way you can, we humbly accept it.
To my sister, my hero, my sweet angel we pledge to never give up!
Thank you for taking the time to read our story!
Victor Salamone
https://netrf.org/pancreatic-neuroendocrine-cancer-vs-pancreatic-cancer/
http://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq
My sister Gina was diagnosed in January 2015 with a “pancreatic neuroendocrine tumor”. Pancreatic neuroendocrine tumors (pancreatic NETs or PNETs) account for less than 5% of all pancreatic tumors. Recent studies have determined that 4 to 5 out of every 100,000 people are diagnosed yearly with a pancreatic neuroendocrine tumor. Pancreatic neuroendocrine tumors are classified as rare cancers. This is the same cancer Steve Jobs, former CEO of Apple fought.
This disease can greatly reduce your life span, but will never reduce the love, the spirit and the sense of hope and faith we have for Gina. With this fight comes numerous obstacles.
Last year after her diagnosis, Gina immediately had the “Whipple” procedure, one of the most serious operations. The surgeons removed 50% of her pancreas, her gallbladder, part of her intestines which also included numerous disconnects and reconnects of gastrological parts. Her tumor was also pressed against a main vein which made a lengthy surgery even longer than the norm. Additionally, a little spot was found and removed from her liver. The procedure was considered a success.
Gina’s first scan after surgery showed the cancer had spread to her liver. She immediately started a treatment plan. Despite three different oral chemotherapies and monthly shots, scans showed the cancer continued to spread throughout the liver. Chemotherapy was not working for Gina.
Traditional therapy wasn’t working - It was time to get more aggressive. Gina’s doctors had talked about direct to liver therapies, however she was at high risk for infection due to her “Whipple” surgery. She met with a liver transplant specialist and another oncologist and was selected as a good candidate for a liver transplant. In the meantime, doctors recommended that we be very aggressive with treatment and immediately begin direct to liver therapies, which she started in April 2016. With this process, doctors mapped out her body and identified specific radiation beads that are made precisely for her body. The doctors started with the left lobe of her liver and finished the right lobe in early June. We were all hopeful that the treatment would help!
Her July 2016 scan indicated that the radiation was killing off the cancers cells in her liver (good) but that the cancer had spread to the lymph nodes in her abdomen. Because the cancer has spread outside of the liver, the liver transplant treatment is no longer a viable treatment option.
Gina’s best option now is peptide receptor radionuclide therapy (PRRT) treatments (also called radioisotope therapy), which are only administered in Iowa, NY and Texas. PRRT treatment is not FDA approved in the US but has been used in Europe for 20+ years. We are hoping and praying that Gina can get into a clinical trial at one of these facilities. The only other option for Gina would be to have the treatment done in Europe. With this would come astronomical out of pocket expenses and most certainly will not be affordable.
While Gina waits to be selected for a clinical trial, doctors have recommended another oral chemotherapy (Votrient). Because this medication is not FDA-approved, insurance companies will not cover it and it's a very expensive drug; a one-month supply usually costs around $10,000.
Gina's current medical bills are mounting to over $15K out of pocket. And today she's faced with continued scans, experimental prescriptions, going back and forth to different states and now possible overseas travel. It’s a very particular and rare cancer that requires medical experts beyond the normal care of cancer. Therapies and diagnosis will be taking us to various cities in this nation.
My sister Gina lives a life like no other I know. She has packed more in her 44 years than any person 1/2 her age. She has continued making it to work through these difficult times and appreciates the opportunity as her workplace continues to believe in her. She doesn’t give up! She is the “fun auntie” to my kids, always willing to take them somewhere special or set a fantastic memory event to cherish for a life time. Some events not even knowing that they were that special until something like this happens. Gina is a servant leader, always worried about and doing something for someone else.
In fact, our Mom was just diagnosed and operated on for breast cancer. Gina was there with our mom through her less fortunate information and has continued to be by her side despite her own struggles. What goes without saying is that “WE WILL NEVER GIVE UP THE FIGHT “!!!
I have learned from my sister, I will not complain when I think I am having a bad day, for someone else; family, friends or complete strangers might have it worse. There is too much to list in this little time or space. We want nothing more than to hug, kiss and be with her in her time of need. We, whether we are family, friends or strangers could be much worse off. WE want nothing more to show our love, support and prayers of accomplishment. We want her to never forget the impact she has made on the countless lives of her family, friends, work associates and community.
This has all has happened in a matter of months so you can imagine how scared we all are. Gina will not lose hope for treatment, but it won’t come without cost.
During this time of need, contributions would be very much appreciated for it causes stress like you can’t imagine nor should anyone have to experience. That unnecessary stress continues to weaken the system and create unknown thoughts and doubts. IN lieu of flowers and plants and gestures of entertaining (all which Gina appreciates greatly!!), money is required to treat, pre-treat and explore new therapies that will slow down this hardship. Your contribution will give Gina a chance. Please help in any way you can, we humbly accept it.
To my sister, my hero, my sweet angel we pledge to never give up!
Thank you for taking the time to read our story!
Victor Salamone
https://netrf.org/pancreatic-neuroendocrine-cancer-vs-pancreatic-cancer/
http://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq
Organizer and beneficiary
gina salamone
Beneficiary