Mark Collins

Please Help Mark Collins Beat Peripheral T-cell Non-Hodgkin’s Lymphoma

There are so many who have been on the receiving end of Mark’s generosity, kindness, and support. He is protective of and fiercely loyal to his friends and family, gives unconditionally, and is completely devoted to his son, Oscar, who Mark is raising himself.

You can read Mark’s story and background below but in short, Mark is in the middle of chemo treatment for Peripheral T-cell Lymphoma, which is a cruel and unrelenting bedfellow. This is the second time Mark has been diagnosed with Non-Hodgkin’s Lymphoma in the last four years. He is currently on short-term disability as the disease and subsequent treatments have rendered him unable to work at this time. As mentioned above, he is the sole provider and caregiver for his son who does not have his license yet and depends on Mark for transportation as well as all of the other things parents do for their children.

Shortly after his diagnosis, we asked Mark if we could start a fundraiser for him, and after a few days of consideration, he gave us permission but said he doesn’t want to know when it starts, which isn’t surprising if you know Mark. Funds will be used to help Mark pay his mounting medical bills, food and transportation for Oscar as needed and any medical expenses not covered by insurance.

For those of you who don’t know Mark as well as we do, here are some things he’d rather be doing right now.

Grilling or smoking piles of meat exclaiming “Of course I grill in the winter!”

Attending a concert.

Exchanging fence beers with his neighbors.

Hanging out with Oscar without being so bloody tired.

Photography, perhaps finishing his coffee table book, the subject of which he may want to share at a later date.

Riding his Harley.

Going on a whisky tour.

Procuring the best Polish food he can find.

Walking his dog, Nugget, and being “forced” to have a beer with neighbors.

Sipping Pappy with family and friends

Trying to convince FuManchu to play at his backyard BBQ next summer.

MARK’S STORY

The “Sinus Infection”

In August of 2023, Mark was diagnosed with a sinus infection, but despite 4 rounds of antibiotics and 3 rounds of steroids over the following 2 months, his condition worsened. In early November, a CT scan revealed his sinus cavity was completely blocked. The duration and severity of the sinus issues that persisted for over 2½ months prevented Mark from getting any decent sleep and made eating or drinking a challenge so he lost a significant amount of weight.

Ernie the Headlump

While The Great Mark Collins Sinus Takeover was well underway, Mark woke on August 29 to find a mysterious lump on the top of his head that he named Ernie. By the middle of October, Ernie was joined by another lump on Mark’s forehead, one on his right calf and several on his neck as well as a rash on his left calf and swelling around his nose. Most of the doctors he saw attributed the swelling to the sinus infection until he saw his ENT to discuss the CT scan results on November 8th.

The Sinus Infection That Wasn’t.

Due to the severity of The Great Mark Collins Sinus Takeover, the only remedy for clearing his sinuses was surgery. However, before scheduling surgery, the ENT ordered an MRI. Unfortunately, during an appointment with the neurosurgeon on Nov. 13th, Mark learned the MRI showed a growth inside of his skull that was pressing on his brain. While this was NOT a brain tumor, doctors concluded it was likely his NHL was back and they put the sinus surgery on hold.

By his November 17th oncology appointment, Mark was extremely weak, unable to walk more than a few yards without having to rest and was admitted to the hospital.

Bullet Points

Given the daily changes in his status and multiple medical reports, the progression of Mark’s treatment and responses is summarized below.

Sun., Nov. 19 – Doctors were relatively sure Mark had NHL again, but they were unsure of the type as it was not presenting like the B-cell NHL he had in 2019.

Mon., Nov. 20 – Performed biopsy from swollen lymph nodes in armpit and sent to pathology in Chicago.

Wed., Nov. 22 - Pathology results expected.

Thurs., Nov. 23 - Still waiting for expected pathology results.

Fri., Nov. 24 – Pathology results were abnormal but inconclusive. Doctors decided to move forward with the sinus surgery to provide Mark with some relief.

Sat., Nov. 25 - Surgery was successful and further supported lymphoma diagnosis. Samples sent to pathology.

Sun., Nov. 26 - Mark released from hospital to home.

Fri., Dec. 1 – Mark had a post-surgery follow-up with his ENT who sent him back to the hospital due to “failure to thrive,” which was a result of lack of appetite leading to additional weight loss and continued extreme weakness and fatigue.

Sat., Dec. 2 - Mark was diagnosed with Non-Hodgkin’s Lymphoma (NHL) for the second time in the last four years. His first diagnosis in 2019 was B-cell NHL characterized as a Lymphoproliferative Disorder Associated with the Epstein-Barr Virus. The photo of Mark in this post was taken during that time. After several rounds of paracentesis (fluid removal from the abdomen) and treatment with rituximab, Mark was cleared with continued, but less frequent, monitoring on June 11, 2022.

Mark’s second and current NHL diagnosis is Peripheral T-cell Non-Hodgkin's Lymphoma (PTCL), which is significantly different from the B-cell HNL he battled before. It is very aggressive as evidenced by the progression of his symptoms detailed above. It is extremely rare affecting only 2500 people in the United States per year or about 2.6% of all lymphoma cases according to the World Health Organization. (Total lymphoma cases/year = 96,000. Non-Hodgkin’s/year = 80,000). Treatment is a potent chemotherapy cocktail and a potential stem cell transplant once a patient is in remission as indicated by a PET scan that shows no signs of cancer.

Bullet Points Continued

Mon., Dec. 4 - Doctors deciding on chemotherapy.

Tue., Dec. 5 - Doctors insert a chemo port in Mark’s upper chest.

Wed., Dec 6 - Mark receives first round of chemo in the hospital.

Thur., Dec. 7 - Mark released from hospital to home.

Current Status

The first round of chemo included two drugs, Cyclophosphamide (Cytoxan) and Doxorubicin (Adriamycin), and was deemed successful as the visible lumps and the swelling in his lymph nodes are to be gone. Mark began eating more and gained 10 pounds by the time he was due for his next round of chemo on December 28th.

The second round of chemo contained the first two drugs he received as well as third, Brentuximab Vedotin (Adcetris). Unfortunately, Mark is not tolerating this round of chemo as well as the first, most likely due to the addition of Brentuximab Vedotin. While his visible lumps and swollen lymph nodes remain under control, he is experiencing extreme fatigue, neuropathy in his feet and left hand, weakness and loss of appetite. He lost the 10 pounds he gained back in December and landed back in the hospital on Saturday, January 6th. They administered fluids to improve his electrolyte levels and released him today, January 8th to home with strict instructions to eat regularly and not spend the day in bed.

His third round of chemo is scheduled for Jan. 18th provided he gains some weight and his overall condition improves.

Thank you for taking time to read Mark's story. Please know all support will be graciously accepted and appreciated.

Much love,

Brady Boehm