Jacob's Journey with Neuroendocrine Cancer

Katlin Pretty is organizing this fundraiser on behalf of Jacob Conkin.

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Hi, my name is Katlin and I am starting this fundraiser on behalf of my dearest friend, Jacob Conkin.

"At 26 years old my life was proceeding smoothly and in the direction I was wanting it to go. Career goals had been set, dreams were being made and accomplished, every morning I got to wake up beside the love of my life, and everyday felt like another unspoken promise of delivering infinite possibilities. The pause button was not one I was ready to press—not that I had ever thought I would have too.

But the universe doesn’t play by the rules of one man’s expectations. Amidst the rhythm of everyday life, there was a silent intruder that was writing its code into the depth of my DNA and silently growing, spreading throughout my body just waiting for its opportunity to attack from within. A Neuroendocrine Tumor—NET for short—a term so foreign to me as the likelihood of encountering it. Its rarity was not a shield but a prelude of the unknown journey I was about to embark on." - Jacob Conkin

Jacob was diagnosed with Neuroendocrine Tumor (NET) on January 2, 2023 and began his journey living with cancer. Jacob, his loving partner Jayce and Jacob's family have all been rallying together to follow doctors orders and ensure Jacob gets the best possible care.

January 2023 Jacob was admitted to Peterborough Regional Health Centre (PRHC) for pain management, CT scans, and liver biopsy to properly diagnose Jacob. Jacob was discharged mid-January and was awaiting biopsy results and next steps.

February 2023 Jacob was referred to the Medical Oncologist at PRHC and biopsy results were sent to Kingston Hospital for a definitive diagnosis. Jacob received the official diagnosis of Neuroendocrine Tumor (NET) which is not curable but potentially treatable. Jacob's treatment plan seemed to be falling into place with a board of doctors, social workers, dietitian and a genetic counselor. Jacob was starting to learn how rare this cancer is, especially in someone so young. Mid-February Jacob started chemotherapy. By the end of February, Jacob had been re-admitted to PRHC as the cancer cells were causing Jacob's blood sugar levels to be dangerously low.

March 2023 Jacob received an embolization surgery to remove a tumor that was causing glucose fluctuation. Jacob began receiving physiotherapy and occupational therapy as he had been bed ridden for two weeks due to edema and healing after surgery. By the end of March after more PET scans, Jacob was beginning to walk again and was able to go home. Jacob had nurses and occupational therapists visit to ensure he was able to stay home comfortably.

April 2023 Jacob had his last embolization surgery/procedure in Toronto. By the end of April, Jacob was struggling a lot with pain and working with his doctors on pain management. Jacob received a bone scan that showed lesions on his leg, ribs and sternum.

May 2023 Jacob started chemotherapy again and was having so much pain from where the cancer had spread to. Jacob was looking forward to radiation treatment as he was told it will help relieve the pain. By the end of May, Jacob received news that the chemotherapy and the embolization procedures were significantly reducing the cancer masses in his liver. The focus was now shifted to reducing the new bone lesions found in April.

June 2023 Radiation treatment had began and was finished mid-June. Jacob started chemotherapy treatments again.

July 2023 Jacob was continuing treatments and will need to continue for the rest of his life. Jacob hasn't been able to work since his journey began. Mid-July after several months of not being able to work, Jacob was finally able to return to work.

August 2023 Jacob had finished his 5th round of chemotherapy. CT scan showed that the treatment was working in some areas of Jacob's body. However, bone lesions seemed to be increasing in size. Jacob's pain was increasing in those areas.

September 2023 - March 2024 Jacob began another round of radiation. He continued attending doctors appointments/check-ups and following his treatment plan. Jacob was navigating his pain management with his doctors throughout this time. Jacob's cancer was clinically stable and under control. The treatment was working!

April 2024 Jacob received the results of his most recent bone scan and CT/MRI. New lesions had appeared on his skull and spine as well as enlarged lymph nodes. Jacob was referred back to his specialist in Toronto.

May 2024 Jacob received X-Rays during his monthly oncology check-up. Doctors thought he may have fractured his legs as he was in extreme pain. The X-Rays showed the pain was caused by tumors in his legs.

June 2024 Jacob has been having a hard time with managing his pain due to the bone lesions and goes to the ER when needed. After his PET scan, Jacob learns he is eligible for Peptide Receptor Radionuclide Therapy (PRRT) which is a treatment that uses radioactive isotopes that specifically targets the NET cells. Essentially, it is radiation treatment but for the whole body and not just one spot at a time. Jacob is told this treatment will shrink the tumors and help with his pain. There are some risks involved with PRRT but it was decided the rewards outweighed the risks. Jacob was hopeful and awaiting to hear what the next steps were to get PRRT started. Jacob's pain medication had to be changed as his pain was becoming unmanageable on his current medication.

July 2024 Jacob has his first PRRT treatment and goes on short-term disability. After Jacob's treatment, he isolates at his parents house in a separate living area so that he wouldn't expose others to radiation. Due to the PRRT, Jacob's pain intensives which makes walking very difficult. PRRT is known to make tumors "swell" and then shrink/die. Jacob is bed-ridden by mid-July.

August 2024 Jacob's pain is unmanageable to the point where he relies on a wheelchair to get around. Jacob is relying on his partner to care for him as most daily tasks aren't achievable anymore due to the pain throughout his body. Mid-August Jacob had another bone scan which indicated extensive new lesions with abnormal growth throughout his body. At the end of August, Jacob goes to the ER with unbearable pain and he gets admitted to the palliative care unit for pain management.

September 2024 Jacob was given a medication pump so he can administer medication when needed. Jacob had an emergency beam radiation for a lesion found on his spine after an MRI. Jacob's specialists decided that continuing PRRT was the best option for his treatment so Jacob had his second round of PRRT.

This is Jacob's most recent update:

October 1, 2024

It has been a while since my last update, largely because I have been hesitant to share the recent events of the past week. Here's a bit of what's been going on:

My doctors believe that I have about 6 months left before the cancer takes me away. Now this number is only an estimate and doesn't necessarily reflect my current treatment of PRRT so I'm waiting to see the benefits of that treatment which should shrink the tumors.

I have a lot of swelling (edema) in my legs. I have severe edema in my thighs and moderate or mild edema in my calves and feet. This adds a lot of weight to me.

Likely the worst of all, I've lost the ability to control my legs. I can't move them, bend them or my knees, ankles, or feet. This is likely due to the cancer or tumor pushing on my nerves in my spine. I had undergone emergency radiation on my back to help take care of this but haven't realized the benefits yet. I'm more or less paralyzed in my legs. I can bend my right foot very slightly but my left foot/leg is total paralysis.

I'm not sure what else to say at this point other than to say thank you to everyone who has been wishing me well and know that I appreciate all of you.

Jacob Conkin

Jacob has been doing everything in his power to have the best quality of life while living with this disease.

I am starting this fundraiser to help Jacob and his partner Jayce. I know what is written above is a very quick snippet of what Jacob has been going through since January 2023 however, I also know whoever is reading this has been affected by cancer in one way or another. Cancer has turned my friend Jacob's life upside down and the person who has been beside him every step of the way is Jayce.

My goal is to help Jacob and Jayce with the unexpected financial burden that comes with cancer in any way that I can. Jacob deserves to be focusing solely on his journey and where ever that may take him with Jayce by his side.